stairsteps

little update

2011-04-21T22:05:00.002-04:00

It's been a while... not sure if anyone has stuck around to read, but just in case, it seemed like it was time to force myself to sit down and post an update! ^_^

We are all doing relatively well!
Beckett is a pretty tough baby, very fussy and hates being in the car so the two of us have been pretty much confined to the house (have I mentioned how lucky I am, having a husband that works from home so I can leave baby with him while I make preschool runs?) but he has started to calm a bit and has been treating us to some beautiful smiles and coos. We have been very spoiled with pretty easy babies up to this point - Holden was an absolute dream baby and we have found ourselves referring to Beckett as the "Anti-Holden" LOL - but we hope with time our newest little man will cheer up and be more flexible. Until then, we adapt!

It has been a rough few months with Cade; he was finally diagnosed with Bipolar Disorder (which we suspected, as I have a family history) and we are seeing a wonderful doctor and we have, with heavy hearts, started him on medication. The first one was awful and landed Cade in the ER for fainting, but the second has been amazing - he is doing well in school, getting along better with his peers and his behavior at home while still up and down is more manageable. Cade is so self-aware and is really happy with how he's feeling lately, much more steady and clear-thinking. It's been very difficult accepting and adjusting to such a diagnosis, but now that we're getting him the right treatment it's like our wonderful little guy has finally been allowed to take the stage!

The other kiddos are all doing well; Parker is such a sweet boy and doing well in school; Macy is getting ready for Kindergarten in the fall and Dawson will be starting a 2 day per week nursery school program with a one-on-one aide. We have a sweet new puppy, Nate, and are expecting a new kitten, Oliver, in about a month (as if our lives weren't crazy enough!!) and overall we're chugging along.

Looking forward to a beautiful Easter with our sweeties - here are a few new pictures!

sweet beginnings

2011-02-21T23:46:00.002-05:00

Introducing...
Beckett William
Born February 20, 2011 at 7:40pm
40w1d
9 lbs 6 oz, 20" long
14" head circumference
Apgars 8 and 9
Active Labor of 1 hour, 40 minutes (5 minutes of pushing!)

I woke up yesterday morning (Feb. 20) to some cramping and lower backache and for just a little while I was hopeful labor was on its way. This was the first pregnancy to not only find me reach my due date, but to actually go beyond (okay, so only by 1 day, but hey, give a girl a break LOL!) The cramping went away, I checked my cervix and found it was so high I couldn't tell a thing and Beckett's head was floating so much I could barely feel it. I assumed I was still 3 cm dilated/80% effaced or so, for the second week. Amazing how quick you can feel discouraged.

I spent the day cleaning up, determined to stay on my feet as much as possible, while I tried not to overthink when I'd feel the need to call my former hospital MWs and make an appointment with the only OB that attends VBACs there. I was comfortable going Unassisted only a bit more, when my sense of caution would win out and I'd prefer to be in a hospital.

Matt took the older three kiddos to the children's museum while I stayed home and got the two littles down for a nap and kept on cleaning. Holden had been fighting a cold/sinus infection and was pretty unhappy - he woke up screaming 20 minutes after everyone left, so I took him and laid down with him. He fell back asleep but as I was lying there I felt some pretty low contractions that radiated around my back. I fell asleep and they seemed to go away, though when we both woke up (to Dawson screaming, of course) I had a foggy memory of being woken up a few times by them.

It was about 4pm when I got those two calmed down and set out to start dinner - we were planning a yummy tri tip steak and potato meal, I'd marinated the steak and popped it in the oven and Matt was picking up potatoes on his way home from the museum. At 4:30 he texted to say he'd be home soon and at 4:45 I sat down to use the bathroom and felt and heard a strange knuckle-cracking sensation very low in my pelvis. A small gush of something and I wasn't sure if my membranes had ruptured or I'd just lost whatever remained of my mucus plug. I waited, nothing else happened, so I got up and continued with dinner and playing with Dawson and Holden.

Matt got home with the kids (and the potatoes) and as I started peeling and chopping fluid started pouring out - definitely ruptured membranes! I was excited and relieved, but also a bit nervous. My water had only broken once as a herald of labor - with Parker - and it had been my most painful labor after Cade's pitocin-induced one. I was nervous of how I'd handle a pretty intense and painful homebirth. I checked his heartrate to make sure no cord prolapse and he sounded great. I started feeling cramping and backache immediately so told Matt to start filling the birth pool while I tried to continue with dinner.

Pretty quickly I realized I was not up for sitting down to a nice dinner and Matt realized there was something wrong with the hot water tank reservoir that was only pumping cold water into the pool (even though we had plenty of hot water everywhere else in the house). Okay, awful timing and awful luck - 5 hungry kids and no birth pool! I quickly decided I'd have to attempt to at least labor in our deep soaking tub, though I couldn't imagine having the maneuvering room to push. I asked Matt to bring up all of my supplies and I got hot dogs going for dinner for the kids.

About 6pm as the kids sat down to eat, I started having contractions. Within 20 minutes they were getting difficult to move around through and I'd have to lean over and moan through them. I helped finish up dinner though and got everything in the bathroom set up, continued to check Beckett's heartrate once an hour through a contraction and hoped we'd be able to get the two littles to bed before anything major kicked in.

Matt had just gotten Holden down at 7 when I couldn't stand to be on dry land through the contractions anymore. Dawson got to stay up late LOL. I got into the bathtub and felt immediate relief in the contractions, they slowed and spaced out for a few minutes and they were actually very manageable. Pretty quickly though they got closer together, but they still weren't really painful - there was none of my usual loud whining, I just bit down on a kitchen towel, drank some water and chewed on crushed ice, and moaned and vocalized lightly through them.

About 7:30 I checked my cervix and felt fully effaced, about 6 cm dilated but it was still pretty high - I was trying to mentally prepare for quite a bit more time to bring him down. Transition was always awful for me, I threw up everytime and the pain would get so intense I would be crying to go to the hospital for an epidural - I was trying to remind myself to be patient for that part LOL. But then suddenly 5 minutes later another contraction came on and I felt a little urge to push . I tried to breathe through it, not wanting to swell my cervix with too-early pushing. Then another contraction came very quickly, and my body pushed against my will. I checked again and was shocked to feel his head there and close to crowning. Where the heck did my transition go??? One more contraction after that and I couldn't stop myself from bearing down with everything I had - his head came out pretty easily but after pushing for what seemed like forever it felt like his shoulders wouldn't budge. I couldn't rotate him with my fingers so I lunged on one leg as best I could in the cramped bathtub and pushed as hard as I could and finally he finished rotation and slid out into my hands at 7:40pm.

I was so busy protecting his head (I was worried he'd slam into the side of the tub) that I didn't protect my perineum or upper area as usual, but I was lucky to have no tearing anyways.

Beckett looked so strange, his whole body was perfectly pink but his face was a deep purple - definitely had snug shoulders! He was silent until I blew some puffs of air in his face and rubbed his skin vigorously with a towel. He started screaming crazily and snagged 8 and 9 on his Apgars. We had some misadventures in cord cutting as I'd decided to try the umbilical ring this time, which did not work correctly and so we ended up having to tie up his cord with string - finally found an extra standard clamp a bit later to use. The placenta detached really quickly, less than 15 minutes after he was born, and looked great.

He was SO fussy all night, he nursed for an hour straight and kept stopping and screaming like he thought my milk should've come in last week LOL. I'm still planning to pump exclusively as usual so finally about 10:30 we gave him 1 oz of formula, which he sucked down in a minute and then promptly fell asleep for 5 hours, finally content. He's been much more mellow today, nursing well and sleeping a lot.

It was an unbelievably easy and fast (and low-pain!) labor, I am just a bit sore and his face is pretty beaten up, bleeds in both eyes and light bruising all around his face but we are both doing great overall - it was a perfect note with which to end this chapter in our lives! :)

A few more pics - he looks EXACTLY like Holden did!! So blessed with another gorgeous, healthy boy! ^_^

birthday kids

2010-12-12T23:30:00.003-05:00

Just a quick one tonight - more pics to come - to post pics of our fall/winter birthday lineup. Happy 1st Birthday to Holden, Happy 4th Birthday to Macy and today, Happy 3rd Birthday to Dawson!!

We will be celebrating for our little monkey boy right after Christmas, but he practiced his cake-raiding skills during Macy and Holden's joint party LOL! :)

the hardest thing

2010-12-03T14:25:00.003-05:00

"Letting go doesn’t mean giving up, but rather accepting that there are things that cannot be."
- Anonymous

I am very behind in posting - birthdays, Thanksgiving, many pictures ... but I wanted to go ahead and share the most important thing that has been going on in our family recently.

This morning Matt and I sat for the better part of an hour and put pen to paper many times over, signing over our parental rights for our little Serbian princess, Emerson, before leaving her in the arms of a new family.

This was not a sudden decision, though we are only now sharing it; we actually took the first steps toward this end a few months ago and have been slowly transitioning all the children involved toward this new reality. A couple playdates and meetings, many weekend visits, lots of talking and questioning and yes, much second-guessing, and now that all is final we are ready to share this very personal and very private decision.

I don't feel a need to elaborate on all the reasons for our decision - I think anyone who has read my blog over the last 18 months knows enough of those finer details - but ultimately it came down to what was best for Em and what was best for our other children. There are some people who can't - and never will - understand or accept that, and that's their right to do so as much as it's my right to disagree and stand by our decision. To put it plainly, we didn't fit. It's nothing wrong with Em, or with us - we are each unique unto ourselves - but just that it wasn't the best combination for any of us to achieve our full potentials and more importantly, lasting happiness. Our family is large, active, busy, loud - all things that are very difficult for a child with severe sensory needs to thrive amdist. Trying to balance everyone's needs and still keep our family intact had become virtually impossible and most of the time we found ourselves splitting into pieces, me with Em at home and Matt with the other kids at a sports game or community activity. It hurts to feel like you can't really be a family, that all of the kids are missing out on the thing most important - togetherness.

And though some people would say that you must bend, you must adapt, you must deal - we refuse to accept that for our kids, including Em. Just as much as we want to enjoy our biological children and make memories as a family, we also want that for Em and at some point, we had to admit that bending to the point of breaking was only hurting us and hurting her - and we all deserved more than that.

As always, we want Em to progress to the best of her ability, on her own timeline, and to be happy and connected and part of something while she does it. It is probably one of the hardest things for a parent to do, to admit that they are not the best ones to make that happen. But however hard it is, it's still the right thing.

I did not always feel that way, and admit when we first started our adoption journey and I came across "disruption" I was horrified. How could someone consciously take in a child, only to cast them out? But I suppose I had a similar difficult time understanding how birth mothers gave up a biological child for adoption. And as it often does, life forced me to walk that path so that I might understand, and remember to check my judgements on decisions I've never been in the position to make.

I am positive that some of this decision is motivated by my own limitations - what I feel I can and cannot handle, what I'm willing to handle - and I accept that often disappointing humanness in me. Down syndrome may not have been able to gift me with an infinite amount of patience and grace, but it certainly taught me to accept and even embrace the qualities - positive and negative - that lie within each of us. I am sure that it is that reality which many people find fault in when it comes to adoption disruption and perhaps adoption in general. Very rarely is a child given up by a parent, whether they be teenagers or seasoned adoptive parents - at birth, or after a few weeks, or a few years - without the parent knowing that possibly, somewhere deep inside, they had it in them to continue on. But I think perhaps it is part of our parental instincts to want more than that for our children - to want them not to have "just enough" but to have as much as life will allow. And while we probably could continue on in this difficult, stumbling dance trying to parent all to our best ability, only our own sense of morality and duty would benefit. Reality, however, for our biological children and for our adopted child, would be the thing to suffer. And I'm not willing to let that happen.

The fact is that no matter what this says about us, or me, we are at peace with it. There's really no argument, no disparaging remark, no judgemental comment, that I have not made to myself many times over in the last few months. Sophocles had it right when he stated, "There is no witness so terrible, no accuser so powerful as conscience which dwells within us." But I think often our conscience serves to show us the fallacies of our own moral arguments - it teaches us to be more understanding, more open-minded, more compassionate ... especially toward ourselves.

Developmental milestones and all other practical issues aside, I know we did two great things for Em; the greatest being getting her out of the cell she laid in for 22 months and the second greatest being getting her to the amazing family we feel sure is better able to help her find herself, her own potential, and as much happiness as all children should have. Everything else in between pales in significance and whatever failings we struggle with in our hearts, we do not doubt those two successes.

This has been a very emotional and difficult time for our family and we know the coming weeks and months will be that much harder. We are very fortunate to have family and friends who are all incredibly supportive and understanding of our decision. I will be moderating comments on this blog for some time to come and while everyone is entitled to share whatever opinion they feel they need to, for those who feel unable to share with a loved one or friend in real life and instead must direct it toward us - I will not be publishing any negative, critical or hurtful comments. I will make only this one response, to blanket all of them - I respect your opinion. I am very sorry you feel that way and I wish you the best, as I'm sure you would wish us and Em! Our family is healing right now and I won't waste one ounce of emotional energy on further explaining or defending this incredibly difficult choice. We also sincerely appreciate comments, thoughts and prayers of support.

We are grateful to Em's new family for inspiring us and supporting us so much along the way and we are especially grateful to Em, for all of her lessons and especially for all of the snorting giggles and crinkly-eyed smiles that we will miss the most. We can't wait to see what this next exciting chapter will hold for you, little one.

the bodacious letter "B"

2010-10-05T10:52:00.001-04:00

B is for Busy.
Which is what we have been the last few weeks! Soccer for Cade and Parker, trying to get 5 kids ready for and off to a new school year, deciding not to send 2 of them (Dawson and Emerson), a prenatal appointment and ultrasound, the usual stuff. Everyone is doing really well, especially our school-goers (including our newest, Macy, who loves PreK!)

B is for Birthdays.
And Belated, too! At long last, sharing a few pics from Parker and Emerson's joint Big 5 and Big 3, including the achieving of my sweetest goal for her - enjoying birthday cake (and she did, an entire big piece!!)

B is for Baby Steps.
Like the ones Holden started about a month ago, and quickly turned into full blown walking!! Like Macy, he's another early one and is already beginning the bumpy journey of learning to run and climb. It is so strange - but adorable - to see him toddling around the house with his older siblings. He is having a Blast! ^_^

B is for Backing Out.
Of decisions we took a lot of time to make. We were so excited to send Dawson and Emerson to the 3 hour morning pre-preK program at a local center dedicated to children with disabilities (but offering integrated classes!) but with Emerson never coming out of her last regression, her sleep at an all time low and the idea of her trying to stay awake all morning and engaged in an overstimulating, noisy environment... we called up our school district and said no thanks. Then, we found out Dawson had been put into a slightly older class (instead of an "early transition" class for 2 1/2 year olds, his only option in the morning was the 3-5 year old class) and after taking him for one day and spending the whole 3 hours with him, I was very disappointed - and a little shocked - by the reality of the class. Overbooked, tons of crying kiddos either very emotionally delayed and in their own little worlds or leaps and bounds older and further along developmentally than Dawson and huge safety issues for a 2 year old with DS. I basically served as his one-on-one aide all day, coming to his rescue on the playground when none of the teachers or aides would, and as a one-on-one aide wasn't part of his IEP as it wasn't seen as necessary given his moderate delays, another big discussion with Matt and a phone call to the school district to request we go back to in-home services. It was very stressful to switch gears so much but the program was not at all what we had envisioned for the little ones, so absolutely the right decision.

B is for Boys.
Our oldest two have had a very easy transition back to school - Parker started Kindergarten and it was just another day's adventure for him, no tears or worries and ready to go. So far things are going well and the boys love being able to ride the bus together and see each other at recess. They are pretty darn adorable standing at the end of our driveway, obscured by too-big backpacks, swaying from foot to foot and waiting impatiently. Cade has surprised and delighted us with how well he's already doing - his very first spelling test got him 9/10 correct and a new DVD for a reward! He still has moments of difficulty but overall it's clear to us that he's maturing and learning to cope with his challenges - so glad we stopped the medication!

B is for Beckett.
That's right, our ultrasound at 16 weeks to check on those darn Subchorionic Hematomas revealed we are, as suspected, having another beautiful baby boy!!! The kids are all excited - Macy is a bit disappointed it's not a girl, as was I for a while, but seeing as her daily mantra is, "Holden is so, so, SO cute!" she is looking forward to another darling boy in her life. Our regular level II ultrasound was on the 30th and all looks great and the hematomas are now gone! We are now half way there! All in all, things looked good, and these days, we can't ask for anything more! ^_^ Here are some pics of our newest cutie and his home! :)

always something

2010-08-11T00:09:00.000-04:00

Just a little update, as life is pretty busy right now, getting ready for school to start and a lot on my mind! We celebrated Parker's 5th and Emerson's 3rd birthdays last weekend and I have, as always, lots of great pictures to share. Hopefully I'll actually get them posted this week.

I had my NT scan last Friday and good news is baby looks great - NT measurement was only 0.7mm (great results are less than 2mm, so ours were pretty much fabulous), great heartbeat, baby measuring right on track and moving all over the place.
Bad news is that not only did the Subchorionic Hematoma (SCH) not resolve, but there is now a second one. They're both small, but I was really hoping it would be gone by now and instead it multiplied. I have a follow-up ultrasound in 4 weeks to check on them and until then need to take it easy and keep my stress to a minimum. (Apparently they didn't notice the fact I have 6 kids at home!!!) I am doing my best to follow the advice and not worry too much, but it's hard. If the SCHs don't resolve it will likely mean no homebirth as I'll have an increased risk of preterm labor and placental abruption. But of course my immediate concern is miscarriage. Again though, trying to stay hopeful and relaxed! :)

Here are some pics of our little Pinocchio-Monkey Child. It changes daily but for now I am thinking BLUE! ^_^

lucky

2010-07-17T09:12:00.004-04:00

It's been a busy couple weeks, lots of pics to share, hopefully I'll get them posted in the coming week! We took the kiddos to the ScienceCenter in Ithaca, including Em (last time she got to spend the day with the Outman family, as she previously got terribly overstimulated at the museum) and this time she did wonderfully! She was looking around, playing in the huge "red blood cell" ball pit LOL, and was generally happy and curious. Dawson, on the other hand, decided it was his turn to spin my perspective and when he wasn't trying to desperately launch himself back into the ball pit (who can blame him, everyone loves swimming in red blood cells!), he was whining or crying. Hopefully those two get better handling their emotions/sensory overloads as they get older! ^_^

So, for today's post ... it seemed like it was time to explain the crumb left at the end of my last post. ^_~

It maybe doesn't seem grand (or even surprising!) but to us it's pretty BIG, as always! The picture below was taken almost 3 weeks ago and I've been dying to post it. :)

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That's right, we are expecting lucky #7! O_O

I'm due on February 19, so as if our fall/winter birthday lineup wasn't packed enough, we'll now have two sharing a month! ^_^ It wasn't quite planned and was actually more of a one month, let's-see-what-the-Universe-wants before calling our family complete and doing something to make that happen. I had an appointment on June 9 to go over my options and well, decided to test that morning before going. Needless to say, I got to cancel it. ^_^

We're feeling very happy and far too blessed and though going from 6 to 7 means big changes for us - a full-size van (!) and soon, some remodeling or looking into getting a bigger house - the positives of having another little life to enjoy far outweigh any negatives.

Do we know what causes it? Yes!
Don't we have too many? Maybe!
Are we crazy? Probably!

I'm 9 weeks today and so far all is going well. I'd had the ultrasound because of some spotting which was likely due to a very small Subchorionic Hematoma (SCH) and just a few days ago I got my new doppler in the mail and we found the heartbeat right away - 177 bpm, and that sound never gets less amazing! I've been feeling those early little flutters and popping corn sensations for a couple days. Luckily, I have only had mild nausea here and there and occasional headaches - easier even than Holden's pregnancy!

Although we've always declined all prenatal screenings other than the level II ultrasound around 20 weeks, and we still would never terminate, we have decided to have the NT scan this time around (just the scan, not the related bloodwork). While we'll accept whatever we are given, we're hoping to have some reassurance (or some advance notice) of any issues we might expect. I am planning another homebirth but this time, another stroke of luck - the NY Legislature just passed the Midwifery Modernization Act and I now have a midwife lined up! I'm happy to have the extra support this time around.

We recently told the kids and although Cade first gave an Oscar-worthy, "Oh no!" they were then all immediately thrilled, placing their orders for a boy or a girl and asking when the baby would be here. :) We're announcing to our families now, and are ever-grateful for having such a wonderful support system.

We are busy, sometimes precariously balancing everything it seems on the head of a needle, but still - very lucky indeed.

all the king's horses

2010-07-02T17:49:00.004-04:00

Ah, that time again. It's been a while since my last post and we've had many wonderful days, good days, okay days, stressful days, worried days, sad days. As we all do over the course of a few weeks, I suppose. ^_^ So this post might seem a far cry from the last one, a wild swing to the other side perhaps. But it is just one post, written on one day. And there will be more - hopefully lighter! - ones to come!

The boys finished school last week - they're both happy to have a break but of course already falling victim to The Big Bad Boredom. Matt and I decided to do a mini homeschool all summer so we have been trying to do an hour twice a day working with the older three, hopefully getting Cade more solid with his Kindergarten stuff (and close to reading!) and Parker and Macy more prepared for their new school experiences. It's tough with the three little ones but we've been working around therapy sessions and naptimes. So far I think we're off to a good start! :)

I spent 2 hours in IFSP meetings for Macy, Dawson and Emerson and at the end felt like I'd just been run over a few times by a larger version of Cade's yellow Power Wheels Jeep heh. Emerson's took the longest and at times I felt like laughing and other times like sobbing. She and Dawson will be starting an integrated pre-preK program at Handicapped Children's Association this fall. It's 3 hours 5 days a week and they'll get all their needed therapies there. At first there was some confusion about how Emerson would even attend because her therapists were recommending so many sessions per week, mostly individual, that she wouldn't have any time to be "in class." So they talked and altered their recommendations. She's also getting a one-on-one aide. Nearly everyone in the room had this pitying, horror-struck look on their face when the therapists and then me were talking about her various issues and problems - we had to have something put into her IFSP about her self-injurous behavior so she can be watched carefully around hard floors and walls. I kinda wished I'd brought her to the meeting so they could put a real face to the scary paperwork. But she wouldn't have done well for that long of a meeting.

Dawson needs less therapy, of course, and no one-on-one aide. He has finally started getting interested in breaking away from his momma so I am pretty excited for him!

Emerson had those few weeks of blissful progress - eating great, learning signs, being engaged, happy, playful, snuggly! - and then the little ones caught another upper respiratory infection, hers seemed to turn into a sinus infection, and it was all GONE. Just like that. Humpty-Dumpty and another Great Fall. And so far a course of antibiotics, though it cleared the illness, and two weeks of health, haven't brought her back. Now the littles are all getting a cold again, and she is slipping even further away from us. I should be used to this by now, I suppose, but somehow this time it has been even harder on me. I really thought we had finally found that corner we've been looking for and were whipping wildly, joyously around it.

Her eating is hit-and-miss, some good days, other really terrible ones. She has dropped about 1 1/2 lbs. So we made the call to the gastro yesterday. At this point, we think a g-tube is our only Next Step. Hopefully he agrees. Her love of banging her head into things and climbing up onto stuff and then throwing herself back like an Olympian off the high-dive have gotten worse. Her teeth grinding is back to where it was months and months ago. Her right cheek has looked swollen the last few days and she's been having blood on her lips which I assumed were from cracked lips or her usual cutting the edges of her sharp teeth on her lower lip. But last night while brushing her teeth I realized what was causing all of it - it appears she has been grinding her teeth on her inner cheek, with little molar marks on the soft skin left angry and red. I don't know how to stop it. Her sleeping is at its worst - she is up at least 2 to 3 hours in the middle of the night, every night, moaning and banging her head back on the mattress. I have sat with her while she slept for a while and even when she's asleep she tosses her head back and forth fast. I don't think she has sleep apnea, but we are going to talk to the pediatrician just in case. She takes a short nap each day but spends much of the day yawning or lying folded in half, listless. Melatonin doesn't work for her and when we asked the doc about a sleeping pill he looked at us like we'd asked for rat poison. No clue how to get her better rested.

I've also been talking with the cardiologist out in San Francisco who does the robotic heart repairs because well, we are trying to find any possible cause for her issues. He reviewed her records from our cardiologist and recommended she have surgery now rather than later, unless they want to "beef her up" - if only it were that easy as wanting to do that. Unfortunately, after talking further with him, we've realized surgery in California is impossible for us this year as it would require a 2 week stay. Matt doesn't have enough vacation time stored up to cover that and we cannot take that long without any income. And yeah, I'm really worried about her having major surgery right now with her current nutritional state.

So now I've had her records sent a cardiologist at NYU to see if he could perform a repair on her particular defect using the same daVinci machine the San Fran guy uses. Boston Childrens will be my next stop.

We still need to make appointments for her to have her orthotics redone (she just gets out of them and is making no progress with her ankle stability), opthamologist and a developmental pediatrician to finally, hopefully, have someone look at her issues and have a tiny inkling of what might be going on - Autism? Something else? She isn't supposed to see the ENT until the fall but we wonder if she's getting filled with fluid again. We are overloaded with her appointments right now and running out of useable vacation time for Matt - FMLA protects his job but does nothing about pay for the hours we lose with each appointment. So we try to spread them out a bit.

I feel like I'm chasing invisible bouncy balls down dark alleys - there are a lot of things we keep thinking IT could be, but never any answers. And no one in sight seems to have any.

I think I should feel overwhelmed with her issues right now but I don't think I'd use that word to describe how I feel. I feel distant from her issues, because I'm so used to it by now. And just puzzled over what to do next. For her. For our family coping with her issues.

We went to an absolutely beautiful park early in the week - lake, beach, tucked down in a valley of trees and rolling hills. There was no one there, it was quiet and warm but breezy. We had a picnic - Emerson even ate her mac n cheese sitting on the blanket next to me! - and the older three, Dawson and Matt went out to play in the sand on the beach. Emerson sat rolling a ball with me for a few minutes, then the wind picked up a bit and she started crying. And grinding. And soon we were sitting there, her screaming and grinding, me holding her on my lap with the blanket wrapped around her, shh-shhing and kissing her head. And Holden sat next to us, crawling around and babbling at me like nothing was amiss. And I watched the other kids playing happily. And she cried for the entire 20 minutes we remained there. And at one point I thought I might join her. But I held it in. And wondered how things would be for us as a family - going to an amusement park 3 hours away at the end of the month for Parker's birthday, we already know we will have to find someone to watch her for the day as she won't be able to handle it; going to the zoo, going to that lake to swim, going to soccer games in the fall when the older kids start up, going on long vacations - to Bethany Beach or Disneyworld or one day, maybe, Europe?

But I try not to dwell too much on those unknowns and just deal with what I know right now, what I can do right now, and hope we figure out the rest as we go along. And if we can't, that we will figure out what is best for everyone and just be happy with it.

We had some really exciting happenings for our family in the last few weeks too. But, this post has gotten long enough and I will save that for another day. ^_^

under the big top

2010-05-27T20:27:00.004-04:00

It's funny how pictures lit only by dim yellow fluorescence can give such a sense of reality - in motion, blurred, hard to catch. Our life, the Greatest Show on Earth! ^_^

Things have been busy-bordering-on-chaotic for the last few weeks; at least that's my story for my long silence and I'm stickin' to it. This blog has become my virtual Kitchen Counter O' Crap - you know, that one space in the kitchen you use to dump the dpzens of catalogs you seem to get in the mail each day, the PTA meeting notices, the coupons that will expire long before you get around to clipping them. I pass by that counter at least a hundred times a day and each time I stop, just for half a second, and I think Wow, I really should clean that... only to be distracted by the microwave beeping, a baby crying, a poopy diaper burning up in my hand and begging for the trash can. And so it's left another hour, another day, and it keeps getting more and more cluttered until you realize how much it has entered daily conversation. Where is ---?
I don't know, somewhere on The Counter.

And so I have felt so behind here, so caught up in each day that the thought of going back and editing and organizing and rearranging the happenings of the previous one leaves me with a yucky taste in my mouth.

But today is a special day for our circus and I couldn't deny it was time to put things in their place.

Cade. What to say for Cade? He was doing great for a while, gently medicated on his 5mg of Adderall XR. His teacher was incredibly impressed, the usual storm of his behavior had calmed to a light drizzle. And then... ah, there's always an "and then" isn't there? Suddenly his concentration at school was scattered, his violent outbursts at home more frequent. Exasperated, we asked Dr. Dum Dum (I mean, the pediatrician) if we could try to increase his dose to 10mg. See what happens. The last few days have been puzzling; upsetting. He has been cold, aloof, intense and angry - some ultra-introverted goth teen trying to act like he doesn't need nothin', no one. Still hoping it's just a temporary glitch as his brain processes this new amount of Stuff and he will eventually find a happy balance, but really, I'm beginning to doubt his diagnosis. I really think he might end up falling clumsily somewhere on the high end of the Austism Spectrum and I know it's time to get him in to that pediatric holistic-medicine psychiatrist we've had our eyes on and I admit I'm a little afraid to do so.

Today I did something maybe a little strange, though I know many other parents who have done it - I took some of his medication myself (a double dose, though still probably not enough based on my weight) to see what was what. And it was strange; I felt I had jumped into his sneakers for a couple hours while my body burned through the medication and I was vaguely aware of the fact that I felt very calm, very serious, very cold and far away. Sure, I got the living room clean in half as much time as it usually takes me. But I felt a little... robotic. And it scares me to think that is how Cade feels each day. I want to find a med-free way to help him do his best and I am hoping we can do that this summer, free from the annoyance of well-meaning teachers who think every kid should be doing So and So by Such and Such time.

A friend on one of my message boards posted a link to a pretty awesome article regarding new research in ADHD and other behavior issues - it's pretty common sense when you think about it, but it is always nice to see "problems" looked at through a positive lens. I confess I sometimes wonder if I am an Orchid Kid myself. Cade and I have a lot in common.

Parker is doing great, as he tends to do. :) He was discharged from speech therapy last month with articulation in average range at last and expressive/receptive above his age. He just had his Kindergarten screening this week and did great - he is pretty excited about the new adventure he'll be taking on in September!

I don't think I've ever mentioned it, but the school district here is pretty fabulous and we are lucky to have an excellent Universal PreK program. His school has an annual Literacy Day where the kiddos get to bring their fave book and dress as their fave character and then parade around for some pretty cute pictures. Parker was adorable and can I just say it's amazing how much a $10 ridiculously large toothbrush can induce giggles in a 4 year old? ^_^

Scissors. Ah, how I hate scissors. My sweet little Macy had an unfortunate incident with a pair last week and her finally-growing wisps of hair were shaped into the most lovely mullet you can imagine. $13 (with tip) at my favorite day spa later and she has a cute bob that will keep her cool for the summer. She is still working on potty-training (ugh) and is ever the Little Mother. I'm convinced she will grow up either to be a Physical or Occupational therapist or raise a whole brood of kids (2 boys and 13 girls, according to her ^_~). She continues to be smart, silly and affectionate and I will miss her terribly when she starts PreK this fall. We are making huge progress with her speech articulation issues, though she will still get services at least until Kindergarten, and her receptive/expressive scores are even relatively further beyond-age than those of her big brother.

Dawson; My Dawson.
Oh, my little boy is growing up. He is walking. Not just walking occasionally, for X number of feet. He is walking all over, opening cupboards, pulling out pans, seeing what treasures he can reach and pull down from that aforementioned kitchen counter. He is ready, he is set, he is off! He is kicking his red sensory ball all over the living room and yelling, "I got it!" to no one in particular, all grins and joy at his newfound freedom. Joy. If he were a girl it would be his middle name.

Gorgeous boy, littlest one - Holden is just flying along. He is sitting up on his own, getting down onto his tummy on his own and melting my heart by the hour all on his own. The other day I was struck for a minute as I watched him sitting on the living room floor, laughing at the antics of his big siblings and munching on Gerber cheese puffs and sipping juice from a straw - where did my baby go? I can see the anticipation in his eyes when he watches all the action around him and while part of me can't wait to run with him, the other part wants to keep him here, snug against my chest. No matter how hard I try, I can never freeze these moments in my mind; perhaps I just have an awful memory or it's simply a side effect of having a large family - but oh how I wish I could Remember This.

(Don't mind the black eye courtesy of a meeting with the Corner of the slate planter in our living room. Ah, the joys of cruising.)

I saved the best for last.

One year ago today Emerson was being Gotcha'd.

And for a while there I thought we would be trapped forever in our own worlds, never to meet except in silent passing, the last few weeks have found Emerson ... well, Found.

She had an upper endoscopy about a month ago which revealed no physical abnormalities but did show inflammation from reflux and h. pylori bacteria. After a massive dose of antibiotics and beginning a course of antacid medication and a few days of me and Matt in a panic over the idea of a G-tube in our future, she just started eating. A lot! And though she still has strong aversions and preferences, she has opened herself up to a few new tastes and textures - she even imitates me when I chew crazily, chanting "Chew chew chew" like an overachieving train. She is trying. Finally. And she went from 20 lbs to 22 lbs in 2 weeks. She was always a stubborn bratty little thing - now she's a Chunky stubborn bratty little thing!

The best part of all - she's WITH US. Her days of staring into space are long gone. She is with us, always. Even when she gets tired, hungry, thirsty or otherwise miserable, though she still will sometimes toss her head into the wall like croutons into a salad, she is still WITH US. And she is learning signs like crazy.

Baby.
Eat.
Drink.
More.
All done.
Sleepy.
My turn.
Dada.
And my favorite - momma.

She has even combined a couple signs and above all, the girl has Attitude. When she's irritated, she lets you know. And though sometimes her strong emotions take me aback, what a difference from the far-away princess we were entertaining just a few short months ago.

It took long enough, but I am so grateful It came. The moment when I realized hey, yeah, she fits in this wild circus of ours. She is the tightrope walker, teetering somewhere between falling and soaring, and I am at last the grateful net waiting beneath her still-size-2 feet, enjoying the Show.

swing, swing, swing

2010-04-17T15:21:00.005-04:00

I am backlogged with tons of photos, a post about our latest trip to The Magic Paintbrush and too many little sighs of annoyance and pearls of wisdom to count but for now, just this.

Emerson signed "baby." Emerson signed "baby" on Monday night. And on Tuesday. And on Wednesday. And on Thursday. And on Friday. Emerson signed "baby" when I prompted her by saying "baby" and lifting one of her arms into the position. And this morning I sat down beside her with Holden in my arms and she smiled at him and crossed her hands over her arms and swung them back and forth enthusiastically. And I ~~almost~~ cried. Silently at least, lost in that great battle to keep those tears back, the way the water tries to bend outward at the brim of those cheap inflatable kiddie pools.

And she could have just jumped up and taken a Sharpie pen to the already-abused hallway wall and written the perfect equation by which one can create cold fusion (or some other strange scientific unicorn I know nothing about) or she could've opened her mouth and told me she was only eating Gerber mac 'n' cheese from now on and Beech-Nut and their extra 40 calories could go take a hike.

I was beginning to wonder. We thought she'd signed "more" a few times a few months ago, but we couldn't get her to repeat it and it seemed she was just imitating and not understanding. Now, she just signed "baby," consistently, perfectly, appropriately, and all my fears of a lifetime not being able to communicate with this little princess went POOF! into the netherworld. If I were in Serbia right now, stepping curiously down those halls with the sickly sweet scent of Pediasure wafting from the cooler in my hand, I would have found that dear woman who made it all happen and thrown myself at her for a far-too-tight hug and thanked her for bringing us to this amazing, often-frustrating but ever-surprising reminder of the most simplest joys of life. And Dr. J would have thought I'd lost my mind (which she probably has thought from time to time over the last near-two-years!) but I probably would've laughed and not cared a bit. She helped us find a gift we are still unwrapping.

Maybe she won't speak, maybe she won't read, maybe she will but it will be the kind that is frozen in toddlerhood forever. But we will have something; we will spend the rest of our days tickling and playing peek-a-boo and signing "baby" until our arms grow simply too tired for another swing.

turning corners on circular streets

2010-04-06T23:30:00.000-04:00

Despite the stress and little sorrows of the last couple weeks, Spring Break thus far has turned out to be relatively awesome. Matt took a couple surprise days off work to ~~prevent me from losing my mind~~ help out with all six kiddos home all day long, the weather was unbelievably warm and beautiful (seriously, it's hard to be depressed when it's pushing 85 degrees outside), Cade's behavior seemed to mellow out and Emerson had five full, glorious days of eating three meals a day and sleeping through each night. My little sister came to visit on Saturday, and though we didn't get to the spa or a movie or even out of the house without children in tow, it is always nice to have your sister around when you're feeling less than blissful. It's also imperative to seize the opportunity to have another human handle the camera while you finally get around to sitting everyone down on the front steps for a photo.

The last time we did this was May of 2008, as we were required to include a family photo with our letter of inquiry sent to Belgrade. Funny how adding just two more little people makes us suddenly look like we're auditioning for a TLC show (I always liked plain ol' "Stairsteps" for the show name, but maybe something like "Crazy 8s" or "Supernanny Rejects" would be more fitting?) Can you hear the sappy voice-over?

My beautiful little sis.

I am not sure what inspiration gripped our little Emerson last week but she was eating a huge bowl of oatmeal mixed with a pureed fruit and some heavy cream for breakfasts, Graduates pasta meals and homemade mac 'n' cheese more fattening than I can even guess for lunch and dinner. She still wasn't drinking much but she was closing in on 1000 calories each day and she was joining us at the dinner table, no screaming or hair pulling or finger talking (when she's stressed about food, she does this weird thing where she looks at her finger close-up, eyes crossing, as if she was hoping it might be able to help her) and it was so... nice. She even had a little bit of strawberry shortcake - crumbs and all - one night for dessert (and LIKED it!) and I could see the recipes tripping over themselves in my head for a birthday cake She Might Actually Eat this August. The amount of stress it lifted from me and the entire atmosphere of our household was tangible. She was playful, happy, with us. I was relaxed, positive, patient. Emerson was eating and suddenly ~~all~~ a lot more was Right with the world.

We have learned though with this little girl, that just when you think you're finally turning a corner, that Things are Getting Better, you are actually traveling in a big circle and there just are no corners to be turned. Saturday night she refused dinner. Sunday she refused breakfast and some of lunch and ended up with around 400 calories. And why hello, here we are again. She saw the gastro on Thursday; he sent us to the lab to draw blood to check for Celiac and we're awaiting those results before he scopes her. I really think a lot of her eating issues are related to how sick she is - she and Dawson have had a constant cold for over four weeks now and this weekend it got worse. I'm not sure I'd be up to eating much if I had junk pouring out of one of my ears, either. So although her regression is totally understandable, it sucks and it means she can't really grow, can't really progress, can't turn any corners, as long as she can get sick. Short of putting her in a bubble, I'm not sure there's any good solution. We just keep going 'round. I hate seeing these two kiddos sick for so long - the entire winter has been such a fog of sickness, I can even forget that Dawson spent Thanksgiving in the hospital with pneumonia. If Down syndrome were in human form right now, I think I'd have to go all gangsta momma on it. Enough already!

The weather was undeniably Perfect on Easter Sunday and although we are not religious by any means, we were happy to celebrate the deep-breathing, sky-gazing, dirt-digging newness of Spring. I was hoping the kids would sleep in a bit so I could get some gorgeous pictures, but alas, they don't really give a hoot about the low-light performance of my camera, now do they? I think they turned out pretty gorgeous anyways though, and the colors flared up as the morning wore on. It was a day spent living between the sunporch and the backyard, and it was pretty perfect, even for Supernanny Rejects like us.

Gooey cinnamon rolls from the can, blooming tulips, coloring eggs you take turns hiding in the yard until you think another minute out of the fridge will surely spoil them, baskets full of silly trinkets and the only chocolate I and my Pittsburgh guy cherish above all others, and a pink liner with "Emerson" printed on it that I bought when I had just found out I was pregnant with Dawson and I was beyond certain it would be our second girl. I bought that damn liner 3 years ago this month and I finally, finally, finally got to use it. It's crazy how our lives can race off in a direction we never could have imagined - this week at least, I'm kinda liking that craziness.

Happy Spring!

redacted

2010-03-23T20:33:00.004-04:00

Ugh, I deleted my last post.

Not accidentally, of course, but it was too cynical even for me. If it ruined anyone's day, apologies.

I used to joke that I was not only a glass-half-empty kinda girl, but a glass-half-empty-and-the-rest-is-spilling-all-over-the-friggin-place kinda girl. It sucks a little bit to be like that, but personalities are what they are.

Still, I'll have to think of something nicer to say before posting again.
Might be a long pause.

I scream, you scream

2010-03-19T13:20:00.013-04:00

Dawson's first self-served cone last week - ah, bittersweet.

It's a No-School Day and boy, am I feeling it. I really can't express how much I dislike, dislike, dislike, dislike having no school and no hubby to help out. I think the boys would agree - even with fabulous weather and endless outside play opportunities, they both just get BORED.

We finally settled on Methylin chewables for Cade; we asked for a 10mg tab to be split for 5mg 2x a day - it's a way to make this as affordable as possible for us as we have one of those awful high-deductible plans that even prescriptions apply to, so we have to fork out the $75 a month alone. As an aside in a blog I usually keep politics out of, yes, for those that don't know or have forgotten, Matt works for a certain second-largest insurance company in the U.S. and I did as well before Parker was born. We have seen it all, we know how it really works in this evil industry, we've felt the burn of being one of the UnderInsured and so we are proud supporters of a Government-Takeover-of-Healthcare, even if that Takeover resulted eventually in Matt being out of work. The poor misguided souls who don't understand the need for such a thing have never been on the receiving end of emails instructing you to purposely delete files waiting for review and spelling out lies to tell said poor misguided souls who think Private-run healthcare is infinitely superior to Government-run healthcare. Single-payer all the way, baby. (Okay, enough said on that, for now at least!)

The pedi informed us this morning the script was ready to be picked up - you know you've gone over to The Dark Side when your kid's prescription can't be legally called into a pharmacy because it's a "controlled substance" - and Matt fully intended to do so on his lunch break. Unfortunately, Cade decided to use that time to run downstairs and let our dog outside (for the fourth or fifth time), forcing Matt to spend the entire time searching the neighborhood for him ... finally, a few minutes ago the Dog Warden called. If this keeps up, we'll have to start inviting him to birthday parties. And all I can do is shake my head at the awful irony of it all and hope chemicals have better luck than I have to get this child to STOP DOING THIS CRAP. The drugs will have to wait until tomorrow.

This morning he woke up, snuck out of his room and spilled blue paint on the nursery floor (Dawson & Holden's French-circus room-in-progress). Yesterday afternoon he took my brand new camera out for an unauthorized testdrive in the backyard. It came back covered in mud but still intact, at least, and had me sorely wishing I'd splurged on the extra warranty. He sure knows how to make the best use of sunlight though, I have to admit; perhaps there's a career there somewhere.

Looking back through the saccharine posts leading up to Em's adoption, all this sarcasm feels foreign on this blog. And yet, believe it or not, that was who I used to be. Before Dawson. Before Down syndrome. I used to think DS was a cure-all for the lower elements of humanity. Maybe it was just a temporary patch. I don't mind though; it helps to laugh at it instead of crying about it.
It's like coming home again.

Our B-eautiful house.

This used to be my cell phone charger. Thanks, Parker. *sigh*

And yet, sweet moments. Unloading my memory card from the last few days.

Dawson stepping through the last remnants of snow last week. We can't take Em outside if there's more than a slight breeze because she screams and gulps air like a newborn. We try to go out when she and Holden are napping, and I've been hanging out with her on the sunporch to try to desensitize her; but no outdoor pics of the Princess.

Dawson loves to swing. He holds on so tightly and laughs and laughs. I love how much he looks like he has Down syndrome here, and how much I don't care.

Look, Ma... no hands?

All that remains of our patio table. Clean up ideas anyone? Ugh.

Cade's Pics during Aforementioned Camera Hijack

green

2010-03-17T12:15:00.001-04:00

The chime just sang for 11:30 in the Frank Lloyd Wright clock in our living room (well, it actually sang for 10:30 because we haven't gotten around to resetting it; really, we were too excited about being an hour closer to bedtime to bother) and I'm sitting here at the computer instead of sitting behind the wheel of our minivan on my ~~12-minute rocketing down the Parkway~~ 18-minute trip to pick Parker up from PreK. Matt surprised me this morning by announcing he'd taken the day off, about 2 minutes before he normally would've been heading downstairs to get started (ah, the joys of having a guy that works from home!)

I could be cleaning the kitchen, scrubbing pink paint off the wall from oh, I don't know, three weeks ago? or polishing the dining room floor or something productive like that, but really, I cleaned 75% of the house yesterday morning in a manic hour that has left me...er, a bit fed up with cleaning. So I figured I'd at least get started on a blog post.

Of course, before signing in and putting my fingertips to the keys, I couldn't resist checking out that suddenly-popular blog I mentioned in a prior post, here. I keep telling myself not to look, but I'm a sucker for good writing and even better pictures, especially when they make me feel like I'm looking back at a little piece of myself.

I normally would think it quite rude to talk about someone else's blog - I mean, really, high school much? - but this particular one has really had me in a funky mood the last couple weeks. I've found myself emerald with envy not over the author's ability to spin words into dancing prose like I used to think I was capable of doing or take pictures of gorgeous kids like I might be able to attempt if I didn't have so many of those said gorgeous kids or, even better, if I had several more arms; rather, I find myself both jealous of and irritated by those luscious first few months after having your whole world shattered and suddenly pasted back together by a miraculous little creature in an entirely new and achingly perfect way.

I read this blog in a half-smiling, half-cringing sort of way, eyes tearing as they're rolling, torn up over the knowledge that two years ago I would've sat nodding and bawling to that blog, maybe even an awkward, "Amen, sister!" tripping past my tongue. Today, that greenly innocent new mommy to an extra-special child is for the most part, grown up and moved on.

These days she is trying desperately to keep chaos down with her thumb, popping Prilosec in the morning for her very first peptic ulcer and counting down the minutes left to survive until bedtime. She is realizing each day that having six kids age 6 and under is

simply.

too.

much.

And there should be a natural law against this sort of thing.

She is finally deciding to put her oldest on medication for his newly diagnosed ADHD/ODD/CD after seeing him struggle to remember some random thing from school he had just demonstrated mastery over 12 hours prior because he can't get his brain to work the way it needs to and being awoken at 6:30 in the morning by a disapproving Parker informing her that this child had run off into the backyard barefoot to look for worms. Part of her is feeling like she is embarking on a Great Betrayal of this child, that she is not accepting him as he is, that she is trying to adapt him to her needs and those of a harsh world instead of letting him find his own path to orbit. The part of her who now delays all vaccines for at least one year, grimaces at the thought of artificial anything and tries to feed her kids reconstituted vegetable protein (yum) and once drove nearly two hours to buy organic beef that was cheap enough to possibly fit into a very tight budget is now about to give her kid mini-meth.

That girl has also decided to let go of her attempt to get a certain 2 1/2 year old with Down syndrome to eat like her age, at least for the time being, as Emerson went on yet another hunger strike for anything with the slightest bit of texture to it or the flavors she just can't live with in her mouth. Thirty minute epic battles of mealtimes are simply not on the menu for a woman with 5 other kids to manage and honestly, she's tired. And when a certain awesome speech therapist made the observation that she seemed "defeated," there really wasn't any other word that could fit the situation better. Because she did in fact set out on a mission, a mission to save a little person from an awful situation and shine her up a bit and help her reach her full potential, to show the world the magical awesomeness of having an extra chromosome; and so far at least, she has been mostly defeated by said little person who would truly dehydrate and/or starve herself into the hospital before progressing. And she's learning to accept that and move on, chugging through the grief and the stress each day to get as close to a happy place as possible and drag six little ones, often kicking and screaming, with her.

And there's nothing beautiful about this. There is no picture I can take, no editing software I can download, to make this part of some book I don't have time to write. This is life. It's messy, it's raw, it hurts, it gives 28 year old women ulcers and calluses on once-smooth hands just at the place where their palms grip the wheel of their minivans a bit too tightly as they attempt not to be 10 minutes late to PreK yet again. Today at least, my hands are getting a break.

And it occurs to me that maybe my blog is the anti-that-other-blog, or would be if I could create an extra hour in every day so I could blog. And maybe some people don't want to read this because it doesn't give you that warm fuzzy you're looking for, the one that makes you feel like you just ate a whole block of cheese and liked it. Perhaps I am just another green, a pretty shade of jade. And perhaps that's the color most of us weather to eventually.

And I'll give Down syndrome and ADHD one point in this, one thing it's taught me other than how to talk myself out of being overly-hopeful and unrealistically-positive, it's certainly shown me how to accept how I feel and realize that it's okay. We don't all have time to document our lives with a sunlit slant - sometimes we just barely have time to live them. And it's okay. There are gorgeous moments, there are ugly moments and although most of us don't want to post pictures of our severely delayed child who has just pooped like a 3 month old up to her neck because she doesn't eat enough solid texture to bulk it up, that is a real, not-so-beautiful but still just as worth it, life.

And what do you know, it's 12:15 and half of my troop just pulled into the driveway. Time's up. Back to reality.

hunger pains

2010-03-07T06:41:00.006-05:00

Last week was a bit of a blur, like the "chooo chooo"s stumbling from Dawson's lips these days.

Parker acquired a huge case of Play-Doh which carried them through the week (and made a Groundhog Day of a mess in my kitchen) but offered a fun opportunity for sun-streaked pictures.

Silly Dawson, still loves to chew on the stuff.

Cade's clothing-sensory issues seem to mirror the eating ones of Emerson and this week found him rejecting one more pair of pants in his closet. His acceptable line-up is getting smaller and smaller and we're not sure what's going to happen when he outgrows/out-tolerates the few remaining pieces.

My darling Holden is getting much more sure of himself on the floor - flipping over to his tummy faster and playing with those oh-so-adorable piggies of his.

Dawson and Em were still sick with a respiratory thing and finally put on the old standby Amoxicillin on Tuesday - which unfortunately hasn't helped much - and after a week of self-semi-starvation (200-400 calories) from Emerson, we had a few days of great eating (1000+ calories!) and wonderful happies from her and even a great tolerance for her new AFOs, and then Friday it all fell apart again and she's now back to refusing pretty much everything. She cycles like that - she eats great for a few days, accepting many tastes and textures and being a joyful, engaging, progressing child.

Then for reasons that continue to completely escape us, she wakes up one day deciding she hates the taste of everything (even something she ate enthusiastically just the day before), screams at the mere sight of a jar of baby food, tears at her hair as she sits in the highchair and then becomes this exhausted, malnourished thing lying on the living room floor, staring off into the distance.

When she's hungry, she doesn't sleep well. When she's tired, she's even less likely to eat than she is normally. She had dropped down to 18 1/2 lbs when she saw the pediatrician last week (down from 20 lbs), then after her few days of great eating she chunked right back up to 20 1/2 lbs, now we're headed back down. We finally asked the pediatrician for a referral to a gastroenterologist. Honestly, we're at our wits end (or maybe beyond.) She's like two different kiddos - one well-fed, happy and the other willingly wasting away. We never know which one will greet us in the morning, and we miss the happy girl when she's gone. We're seeking some testing to look for any physical issues (reflux, obstructions, etc) but we're pretty sure it's just sensory/general difficulty. And if that's the case, we may want to get her a G-tube to fill in the gaps when Ms. Sunshine floats away. Hoping for some help from yet another specialist. We just want her to grow, to progress, to be. happy.

Trust me girly, I know how you feel.

Seeming to catch the vibe, Dawson refused his favorite double-buttered Perfect Grilled Cheese yesterday with great gusto. He can do difficulty just as well as the rest of 'em! ^_^

first steps

2010-03-04T21:06:00.013-05:00

Photo Sharing - Video Sharing - Photo Printing

Between the chaos of preparing for Cade's birthday party and two very runny noses, Saturday night Dawson finally let go of our hands and started off toward the land of Independence. He took three steps before he collapsed with laughter and my heart stung sweetly to the beat of each footfall, as I knew it would. He did this a few times before we called it a night and after a few repeat episodes, on Tuesday I walked into Cade and Parker's room to find him walking five feet across the middle of the room toward a waiting Macy. He was in happy hysterics all the way. ^_^

I of course rushed out and grabbed my video camera and then attempted to recreate the scene - only to find my video camera, like my poor Canon Rebel XTi, had called it quits. Pretty disappointing, but it made the decision for me on which camera to spring for and today I got a shiny new Rebel T2i along with a new 50mm f1.4, one of three lenses I sold when we were saving for a certain trip to Serbia. I absolutely love the new camera and oh how I missed that lens! Even the kit lens is half decent and the video is incredible compared to what I was using. Hopefully I am encouraged to get back to my usual habit of taking 100+ pics everyday heh! :)

It is a funny thing about good photographs; they seem to capture life not as we see it but as we can only wish we could - the most important subjects popping out from a background blurred toward the edges. I have six kids age 6 and under; life is far too real for me to always notice its beauty. So it's nice to have something that can notice for me, especially those oh so spectacular first steps.

sick days

2010-02-18T20:54:00.006-05:00

My not-so-little-anymore Valentine spent his 6th birthday as the first in line for an awful stomach flu that spent the past week making its way through our household. Luckily the Thursday before I'd brought worm cupcakes and bug-themed treat bags to his class - he spent the first five minutes ignoring me, of course! - and his *real* party isn't until the 28th at a local indoor inflatables place. Still, it always spoils things to be sick on your birthday.

The next victims were Parker and Dawson, quickly followed by yours truly (who had it the worst, in my humble opinion) and then rounded out by Macy and Emerson. Thankfully the magical properties of breastmilk seem to have shielded Holden from the bug, but Matt woke up this morning feeling pretty rotten.

It has been such a foggy, exhausting week of constant sheet-changing, baths, carpet-scrubbing and general misery. The kids went about 2 days without eating anything and even today only accepted a little. It's most frustrating for Emerson, who had a fabulous week last week with food - she was eating Graduate level meals and even taking small pieces of grilled cheese and cheesy puffs on a spoon - and now any texture at all sends her into screams and we're lucky if we can get her to take watered down baby fruits.

Dawson and Em are truly the biggest sick babies ever LOL - many long minutes of lying on the floor moaning or crying. :( I just can't wait for the spring; I hate to see these two feeling so yucky and it has been a VERY LONG WINTER!

Still, I managed to find some sweet spots amidst the ickies - getting a little bit of manual focus out of my nearly-dead Rebel XTi with the help of a bright day to catch Holden's wonderful smiles and delicious 17-lb-baby legs and a few more cute faces breaking through. Our tax return is in the bank in 3 hours and I am trying to decide between a Canon 50D and the new Rebel T2i coming out in a couple weeks (it takes video!!) and we are seriously contemplating a Disney World trip next year; it's hard not to chin up. ^_^

the middle

2010-02-05T22:24:00.008-05:00

Holden has been doing so many neat things this week - rolling over both ways, reaching for and manipulating toys and expanding his vocal repertoire to all sorts of coos and squeals and even surprising us by taking a taste of baby food and liking it.

I've been shocked at how absolutely delighted I am by every milestone this time around; I think because he is sans one extra chromosome I figured my reactions to his progress would be a bit tamer than they are with Dawson and Emerson. How wonderful to find I was wrong!

It's hard to describe the intense emotions that swirl up when I am holding Dawson's hands and walking with him, when I feel him straighten up a bit more and pull his weight away from my support and it seems those first independent steps are so close I could graze them with my fingertips. My chest tightens, a cage of butterflies is flung open in my stomach and my nose starts to tingle beside tears that are at the ready. I am on tiptoe atop a tree branch and flight seems altogether possible. And then Dawson feels the uncertainty of his own weight and looks up at me, grinning nervously, before crashing down to the floor with a laugh while my anticipation creeps back. And then Emerson signs "all done" at lunch and it rushes out again. And each day finds me in this dance, emotions pulled taut like a guitar string.

So how amazing to see how similar my reaction is to something so simple as Holden reaching his long fingers out to graze a toy suspended from the bar of his bouncy seat. And I can only stand in awe again at how powerfully Down syndrome can give you new eyes. It is like living life in slow motion, the idea of forgetting to stop and smell the flowers an impossible one with the roses blooming unabashedly against your face. And for the first time I realize exactly how much I missed with my first three children, moments slipped away to echo feebly in my memories.

A friend (thanks, Gina!) emailed me a link to a blog that made me painfully aware of my own creative shortcomings and the fact that I really must replace my broken camera but also left me reminiscing, amazed at how far my emotions have journeyed since that first day I truly believed Dawson had Down syndrome. I wanted to post some short, perfect comment that would serve as a travel brochure for this mommy, but I don't do short very well.

For just a few moments I was back there, examining him for markers I read about on some website after being unable to shake off my awareness of the ones I had already seen. I am seeing the single crease on one of his palms, and a heavy curtain of terror is thrown over my mind and the tears start pouring as somewhere beneath the pure emotion in which I am swimming our entire life is playing itself out like a movie in my head. Every once in a while a certain fact comes up on the screen and I zero in on it, pulling it into sharp focus and letting out an agonized cry - he will never have children. I don't know why but that one hurt the most, and it was the one I went back to again and again any time I started to get a grip on the grief. It was sure to send me back over the edge and that was where I wanted to be.

And then I am sitting at the computer - exactly where I am right now - and picking up my cell phone when it rings. Matt has Dawson at the pediatricians for his 2-week check-up and all he has to say, in a slightly broken voice is, "He has it." And I am floating, I am gone all over again and I know, know it deeper than my bones, that I will never be happy again. I will never be happy again.

I do a lot of wandering over the next few weeks, holding Dawson against me and sobbing passionately like a mother straight out of The Iliad, and I no longer wonder what the hell it means to beat ones breast. I put the other kids down for a nap, even Cade who hadn't napped in nearly a year, so I can sit at the kitchen table with a glass of wine and a bottle of my favorite beer, picking at the green Heineken label where it says "Product of Holland" and trying desperately not to get the irony. Dawson is jaundiced, so sleepy, barely eating, I am convinced he is not going to survive. And sometimes I cry out that it's okay, to just get it over with and let me go back to my previously scheduled program. But then I spray tearful kisses against Dawson's face and the thought of losing him is even more terrible than the current twist of emotions in my chest and all I can say is to please, please, let me keep him.

And then I am coming out of that fog, rubbing my eyes and trying to find some decent footing. And most of the time I am OKAY. But every once in a while I remember Down syndrome and I am crushed all over again. I am changing Dawson's diaper while he stares up at me knowingly - oh and he has Down syndrome. I am holding him steady on my lap and pat-pat-patting out the burp I can hear in his chest - oh and he has Down syndrome. I am taking more pictures than I ever have before and I am scrutinizing every single one of them until I find the ones where he looks least like he has Down syndrome. Those are the ones I want to share. And I ask myself the question we all ask - will it always be like this?

Eventually I am convinced it won't be. I am in love with my little boy and see only his perfectly round cheeks, his pink bow lips and the way he forces me to drag goodness out of myself. I am not happy again. I am a new thing, a thing I never knew before, a thing the word "happy" barely touches. I cry nearly every night for the next 10 months as I rock my angel to sleep, wild, grateful tears. I have been flung so completely from my sorrow as if from a sling-shot and I know only. this. bliss.

Then we are finding Emerson; I am lashing out with this new love and making crazy plans. And I am waiting, and waiting and dying a little bit more each day. Maybe it wasn't a sling shot but a tennis racket and I can see the path of the rebound ahead of me. And then she is here, and she is not my angel, she is Down syndrome. Oh and she is Emerson. And I realize the goodness dragged out can slink back in, finding its spot still warm. And I hate Down syndrome. One night I find myself crying again, rocking Dawson to sleep in the girls' room, crying to the tune of Emerson's harsh grinding and Dawson desperately pulling air through too-small passageways. And I hate Down syndrome. For the first time since those early weeks I hate Down syndrome even in Dawson.

And now I have taken myself out of the tennis match. I no longer swing from ecstasy to agony. I find fault in Down syndrome when Emerson barely breaks 300 calories. But I marvel at its resourcefulness when she pulls herself up on once-weak legs to bat a cup off the coffee table so she can get a drink. I cried when Dawson sat in the hospital with pneumonia, but I cried tonight too when he grabbed my face and brushed his lips against my mouth and said, "I lub oo." I am content knowing that if someone had offered me a magic drug during my pregnancy to remove that pesky extra chromosome - and the same to Emerson's mother - and I did not know the beauty of these two souls, I would have taken it. But I DO know them and so the thought of either of them being different is a terrible one and I can only be glad such magic doesn't exist. They bring me joy and sadness, they make the everyday extraordinary, the smallest accomplishment the greatest feat, they bring balance, and oh yes, they have Down syndrome. And I think this will be where I settle in. Here in The Middle, you know, just like Jimmy Eat World says.

It just takes some time,
Little girl, you're in the middle of the ride.
Everything, everything will be just fine,
Everything, everything will be alright.

Emerson after waking up and Dawson trying to "catch" the light. :)

an open letter to Beech-Nut

2010-02-04T13:34:00.005-05:00

Dear Sir or Madam:

It has recently come to my attention that you have made the decision to discontinue your "Good Evening" line of baby foods, reverting back to your usual "2nd Stage" labels. Although this in and of itself is not a huge issue - after all, as long as you don't create a "Toxic Treats" line or something similar, we parents really couldn't care less what little phrase you choose to put on the jar.

But it seems that while you were changing the label, someone also decided to tinker with the contents of some of the foods, specifically, Turkey Tetrazzini.

I have had a long and troubled relationship with Turkey Tetrazzini, so it is with great inner conflict that I am writing today to mourn it's recent makeover. Previously every single shirt I own has been the recipient of Turkey Tetrazzini's "Water, White Carrots, Turkey, Medium Grain Rice Flour, Enriched Rice Mac Rings, Heavy Cream, Sweet Whey, Fos, Unsalted Butter" and though the tiny golden-orange splatters are annoying, they represent what was for the longest time the only baby food our little Emerson would eat.

However, she is not so fond of the new "Carrots, water, turkey, peas, rice flour, heavy cream, enriched rice macaroni rings, unsalted butter" that you are trying to pass of as Turkey Tetrazzini. In fact, she hates it so much that if she even catches sight of the new white and green label she falls into hysteria.

I do not understand why you felt it necessary to change the ingredients of this slightly-less-foul-smelling foul-smelling baby "food," especially without notifying the parents of Emersons around the country beforehand. But I am writing to ask you - no, beg you - to find it in your hearts to bring back the old Turkey Tetrazzini.

The only other meat/veggie baby food that Emerson will tolerate is Sweet Potatoes & Turkey (not Turkey & Sweet Potatoes - she is very particular) and unfortunately there is only one store in all of Binghamton that carries it and when they're out, well, they're out. And until I can see myself staking out the store to figure out what day and time Beech-Nut is stocked and standing with cash in hand at the delivery area, you are severely impacting our little Emerson's eating capabilities.

Although in some ways it is endearing when Emerson turns her head and cries angrily at all but two types of baby food - really, it's one of the few things that is 2-year-old about her - ultimately I just want her to eat.

And because of your little marketing decision, she won't be doing that quite as enthusiastically anymore.

Really, who likes PEAS anyways?

Truly yours (at least for another year or so),
A Reluctant Old Turkey Tetrazzini Advocate

out of sight

2010-02-01T15:33:00.006-05:00

We are very blessed to live just a short drive down the highway from the Outman family for many, many reasons. This weekend Emerson was lucky to spend some time with them! I have had so many offers for a little respite over the past few months, and I have always been reluctant to say okay, partly because I am a mom who never goes away from her kids for more than a few hours - unless it's to have a baby or adopt a baby LOL! - and partly because I have been afraid it might be traumatic for Emerson. Last week was a rough one for all of us, especially it seemed for Emerson, who was seeming to regress with sleep and eating and the self-injurous behavior, and with the kids asking to go to the ScienceCenter in Ithaca, I figured it might be good for us to have some separate time.

So Em got to play and cuddle with Julie and her little guys (and Julie's sister, Lisa and her Eastern European princess, Katie!) and we got to make the hour drive to the museum and out to dinner afterwards, something we haven't done since Emerson started eating baby food. It was strange not having her with us and I admit I kept trying to take the time to figure out how I felt about her being gone.

Cade's behavior has taken a turn for the worse over the last couple weeks and after some stressful moments at the museum and restaurant I was reminded that Em really isn't the most challenging child we have LOL. Matt and I both felt like something was off the whole weekend, and when I picked her up I was so happy to see her, I don't think I realized I was really missing her until she was back. :)

She did very well during her sleepover with this awesome family and she seemed excited when we picked her up and though she acted a bit angry with me yesterday evening and wouldn't even really make eye contact, this morning she woke up in a fantastic mood and has spent the day happier than I've ever seen her. Even our PT commented that she was just so darn happy. Maybe she loved having a little break from our chaotic household, or maybe she liked waking up in her familiar surroundings, or perhaps we both just needed to be out of sight for a bit to realize how much we really do like each other's company. ^_^

It has been refreshing to have her home and smiling again. ^_^

I finally caught her silly "pirate eye" look on camera LOL!

I'm gonna getcha!

Too sweet. :)

a way with words

2010-01-26T23:11:00.005-05:00

I walked into the bathroom the other night in search of Dawson (who loves to play in the bathroom for unknown reasons) only to discover not only had he figured out how to open the toilet seat, but he'd also taken the liberty to grab the plunger and get to work, all while chanting "Plunge, plunge, plunge..." Funny, I didn't think that was a high-frequency word in our house but geesh, I guess it's used enough. ^_^ And since I was not lucky enough to happen to be carrying my camera, after grabbing him and washing his hands I went and got it, came back and restaged the scene (bad mommy!) LOL!

Dawson seems to be picking up on language as we go now - he learned "snow" and "sand" when we took the kids to the park to ice skate the other weekend. Yesterday he said "light" when I turned the oven light on and today he surprised me with a perfectly pronounced "hammer" while he was working on his Elmo tool bench.

He is still pushing his little carts around the house and amazingly within just a matter of a few days he figured out how to turn it himself. I could've danced when he first did it - no more dashing to his screams for help when he hits the end of the hallway heh! Sunday night I was sitting in the living room (pumping, if you must know!) and I turned my head and my heart stopped for a second when I saw Dawson standing there. Nobody and no object around him, just standing there like he was on his way to the kitchen for a snack. He has been trying to push himself to standing through a bear stance but he never quite gets his body straightened up - except that time! I am so excited for him to start walking on his own. So, so soon! :)

Emerson also said her first word (other than her little "hi" sound she makes in greeting) and how cute that it was Dawson's first word, too. "Ball!" I think she is trying to say "baby" too as she babbles "bay-bah" whenever I sit with her with Holden in my arms. She has signed "eat" a few times, too. Just like Dawson, her trouble is consistency and the fact that she knows we can figure out what she wants most of the time. It's nice to think though that maybe things are starting to click together in that little head of hers! :)

Holden is doing great - he is around 16 lbs now (yes, at 3 months old!) and smiles and laughs and coos and he also says "Hi" in greeting or in response to our "hi" - probably just imitation right now but boy he sure says it well! He loves Dawson and giggles whenever he's in his line of vision. He is starting to roll over both from back to tummy and tummy to back - oh it goes so fast!

We got Cade's ADHD testing results and it's about a 95% chance of an ADHD diagnosis. Next step is to have a medical doctor make the official diagnosis. It doesn't change much, it's just a man-made term after all, but it's good to know so we can start looking into specific discipline techniques and do what we can to help him handle life better.

Parker amazes us and is pretty far ahead the other kids in his PreK class. He can write his name for the most part (he forgets the "a" - stinkin' letter!), knows the days of the week and his drawing skills are great. We shouldn't be surprised with his awesome fine motor skills - he was unscrewing the outlet covers with a screwdriver and opening child-proof prescription bottles at 2 LOL!

Macy's doing well too - we are still working on potty-training (why oh why are all my kids so stubborn?) and she seems very comfortable with the idea of going to school this fall.

And that concludes this episode of Child Round-Up, stay tuned for some pictures! :)

For some reason Em likes to climb up on boxes - ANY box. If it's low enough she backs herself up onto it LOL.

Her hair is getting so long - she is starting to look like a big girl now!

My little cutie pie.

tickled pink

2010-01-11T22:42:00.004-05:00

My Mini is here! And it's just as pink as the above picture shows (I was just too lazy to take a real pic; please accept this stock photo instead LOL) - I love it! ^_^

My suddenly gargantuan hands are still getting used to this tiny little keyboard and this is the first HP I've ever owned so some of the key placements are throwing me off and the screen is so much smaller than I'm used to I keep thinking there's something wrong with my glasses but hey, it's PINK!! :)

Emerson just finished her antibiotic course and the ENT did agree to call in a prescription for ear drops last week so she seems to be feeling better. Her ears had been gushing disgusting snotty fluid but that has since stopped. Her appointment is on Thursday so hopefully we will find out what's going on in there. She is still grinding her teeth a lot, but with a little less severity. I'm trying my best to maintain sanity around the sound, which perhaps results in me walking around gritting my teeth and twitching one eye like some ridiculous cartoon character, but oh well - did I mention my Mini is pink?

We are having a lot of behavior issues with Cade lately and as we've been poking at the idea since he was 18 months old we finally asked the school psychologist to please start testing for ADHD. He's almost 6 so the whole "he's too young, let's wait a bit" response we've gotten from his pediatricians for the last 4 years just isn't flying anymore.

My days can be pretty overwhelming. Half of our kids are high-needs and sometimes I find myself glancing at the other moms in the preK parking lot who just have two or three seemingly typical kiddos with a little wistfulness. Can we switch for a day?

Ah, but then I'd miss out on a lot of fun stuff too. And of course, those other moms probably don't have pink Minis. ^_~

peek-a-boo

2010-01-05T21:20:00.004-05:00

Emerson had such a great day today, even with the constant grinding on both sides. I think being certain there is a physical problem that can hopefully be fixed behind its intensity gave me much more patience for the awful sound.

We won't knoww for sure what the issue is with her ears until her ENT visit on the 14th, but her pedi appointment tonight revealed both ears completely packed with thick fluid. I'm not sure if one or both tubes has come out, is not working properly, if she has a ruptured eardrum or if the tubes are still in place and functioning but it's still not enough to handle the fluid, but our pedi couldn't see anything in there because they are so filled. I have to think this is incredibly uncomfortable for her. It's very strange because after she had the wax removed from her ears a couple months ago, she stopped grinding completely. She was grind-free for about 3 weeks, until she had the PE tubes placed. Then about 2 days after the surgery she started grinding again and it has just gotten worse and worse until it got to its current intensity. There is some connection and I really hope the ENT can make it and find the solution. I hate that she has to wait until the 14th with all that gunk in her ears. :( We may have to search out a new non-pediatric ENT (this is the only one in our area) who is more responsive. I plan to call them tomorrow to at least see if we can get a prescription for some drops to help loosen the fluid before the appointment - I hate to wait 9 days just to be told she needs a course of drops before they can assess anything.

I appreciate so much all of the amazingly supportive comments and emails I've received. I didn't really expect anyone to come to my defense but I am humbled that so many have. I have locked the comments on the prior apparently controversial posts and will be moderating comments before publishing going forward. That's not to say that I won't allow critical comments, but I like having the opportunity to rebutt a comment immediately in the comment section, instead of filling up the main blog page with back-and-forth stuff. I will continue to be honest about my ups and downs, though with one of my resolutions being to blog more, hopefully you will see more ups than I show right now.

Following are two videos. The bottom one I took this morning.
I didn't mean for it to get so long but just like with Dawson I'm always afraid to stop taping and miss something cute. :) I realized while watching it back that she's now pivoting while sitting - that's new! And she's learned peek-a-boo from her little brother; this is exactly how Dawson plays it. (Onetrumedia isn't working for me right now, so I have to settle for the first 2 minutes with Dropshots - hopefully I can get the rest uploaded soon to share the cuteness!) Oh and apparently my scale was off last week - she was 20 lbs, 1 oz at the doctor's tonight!

The first video though is from our second day with her in Serbia. I never posted it because of the snail-like internet connection in the apartment, and tonight was the first time I've watched it back. I got a little teary, remembering how I wasn't sure what to say, what name to call her, or if she'd even hear me. Remembering how afraid I was that she would never truly smile. Sometimes I still see the little girl in this video and I know she will always be there. But she isn't so good at playing peek-a-boo, and so she's seen less and less these days. ^_^

Photo Sharing - Video Sharing - Photo Printing

Photo Sharing - Video Sharing - Photo Printing

go

2010-01-05T00:24:00.008-05:00

Seriously, this is what I'm talking about in judgement.

Well all this shows to those who are already concerned for your families situation is that she "was" happy before the baby was born?? And after she has become like a zombie.

The post comments are tame compared to emails from two people I have received.

Seriously, I have to PROVE to some readers that Emerson is still happy today merely because I posted a video of TWO MINUTES of her checking out during her grinding? Two minutes out of her entire day? Who wouldn't be defensive given comments like that? I guess if someone makes a hurtful and unfounded comment you're not allowed to feel angry and upset by it - that just makes you "defensive" which certainly means the hurtful comment was accurate, right? Truly flawed logic. I'm happy to post a video from today of her playing and actually engaging with us but honestly, why should I have to?

Ridiculous. If you can't fathom the possibility that someone can feel frustrated, upset and conflicted about their child's behavior while still providing proper attention and care for that child then you haven't known very many real life parents. And if that's the case, stop filling up my blog and my inbox with these sort of negative comments.

A good rule of thumb: if you wouldn't say it to someone's face in real life, don't say it online. So if you have anything further irrational, inflammatory or downright mean to say to me, make a video of yourself saying it and post it. And see the pure unkindness in yourself and be surprised and be ashamed. Doing anything less is mere cowardice.

how not to judge

2010-01-04T22:20:00.003-05:00

"Against criticism a man can neither protest nor defend himself; he must act in spite of it, and then it will gradually yield to him."
- Goethe

It's a bit strange to be posting so much after such frequent droughts. :)
But since I made my "resolutions" post I have been assaulted by a few, but buoyed up by far more, and it wouldn't make sense not to talk about such an experience.

It seems a couple people think that the video of Em's grinding somehow proves that she is utterly miserable with our family and is doing worse than she was in the orphanage. I'm still amazed how anyone can so freely (mis)judge someone they've never met, but as I've been picking through my thoughts about all this today I realize I shouldn't be too surprised. I was - and really still am sometimes - guilty of the same.

Children with special needs teach us so many things. But I have come to realize that the most precious lesson is that of judgement.

Before Dawson's diagnosis, I couldn't understand why a mother couldn't just accept the child life had given her. But then I felt her anguish and fear myself, and I learned how not to judge.

Before we brought Emerson home, I couldn't understand why women with fertility struggles didn't just adopt - it was all the same to the woman, after all, and the kids needed help. But then I experienced firsthand the slow bonding with another's child versus the easier bond with a biological baby, and I learned how not to judge.

Before raising a child with more severe special needs, I couldn't understand why any woman would ever even think about terminating after a prenatal diagnosis. But then I felt the heartbreak of seeing a child struggle just to be part of her surroundings and though I still believe it is not the right decision, I now have nothing but compassion for those moms. I learned how not to judge.

Before adopting a previously institutionalized child, I couldn't understand how any family could ever, ever disrupt. I had never even heard of such a thing and I will never forget coming across a family who had disrupted for the first time before we traveled to Serbia and sharing my disbelief - and even disgust - with Matt. But then I experienced firsthand the pain of stressful behaviors and problems with attachment and I understood and my heart broke for any family that ever walked this path before me. I learned how not to judge.

Dawson and Emerson have both shown me every step of the way how to be not a better person, but more of a real person. These children are angels - angels undeserved, for sure - not because of their unique perfection but because of their unique ability to show us that imperfection is perfect, their amazing gift to teach us how not to judge others but especially how not to judge ourselves.

If you haven't yet learned those lessons, I hope someday you will. In the meantime, I will continue to share honestly - albeit somewhat dramatically! - what it is like for many of us on this journey. I am not alone, and for those reading this who have or who will share some of these same doubts, fears and negative emotions - YOU are not alone.

I took another video of Em today while she was playing in the living room but when I was uploading that I came across this older one on my camera and I couldn't help but post this instead. This is from August or so. This is my Em. The one who shares her brother's smile that seems to come from some deep joyful place within that the rest of us can only experience in glimpses. Sometimes she is hiding, but she is there. I get to see her everyday and the criticism I have received has only made me more determined not to let myself get swallowed by emotions, not to forget that decisions made with a cool head instead of a rash judgement are always the best ones, and not to give up.

Make video montages at www.OneTrueMedia.com

Today during lunch Em was grinding so hard she was crying after each time. But she kept doing it, like she couldn't stop. And suddenly I felt absolutely certain that she was in pain. The grinding is a habit for her, I think, but the way she has been lost in it lately is not like her. We originally thought the fluid in her ears was responsible for the grinding, but after the PE tubes were placed the grinding got even worse. But something is not right in there. We called her ENT this afternoon asking for an appointment. They won't see her before the 14th unless there is a cancelation so she'll be going to the pedi tomorrow in the meantime in hopes he might see something in there.

We will figure this out.

two minutes in the life of...

2010-01-04T11:23:00.003-05:00

Since some people seem to be incapable of moving on, I decided to take this 2 minute video this morning with my less-than-spectacular camcorder.

If you hope to understand the true feelings my post was intended to express, here is my challenge to you: turn up the volume on this clip until the grinding is about the equivalent of someone standing right beside you speaking. Play it over and over again for the next 4 hours. Give yourself a 1 1/2 hour break for naptime. Then play it over and over again for another 6 to 7 hours, conservatively, depending on bedtime. Now I'd like you to do that every single day for the next 6 1/2 months.

Make an on-line slide show at www.OneTrueMedia.com

If you are not frustrated, overwhelmed and yeah, at times, truly depressed and having difficulty connecting with this child, then I'd like to suggest you bottle up that patience and sell some to me. ^_^

Of course this little clip is just a slice of my day - it doesn't show the whining from two toddlers, the yelling from a preschooler and a kindergartner and the occasional crying of a 2 month old. On top of the grinding. Perhaps if you could immerse yourself in the sounds of my world you would more easily forgive a negative blog post made some random evening and appreciate the fact that I truly am coping relatively well. And if you can't, well you're more of a superhuman than I.

moving on

2010-01-04T03:22:00.006-05:00

Okay, I figured it was time to post some holiday pictures. I am really surprised by the number of readers who have drawn conclusions about me, my family or how we are coping with Emerson's issues based on something so unreliable as one single blog post. If I were posting 5 days a week with the same expressions of negative emotion constantly, then certainly one might make the assumption that we are swimming in those emotions far too much. But one post a month that expresses the pent-up frustrations over that last month does not paint a complete picture of the majority of our time.

Most of the time we are managing just fine and coping with Em's issues and enjoying the progresses that she has made. Just because I don't jump on here to post everytime I'm happy doesn't mean I never am. I would encourage anyone reading what are essentially online diaries to keep that in mind before jumping to conclusions. You are not looking through the bay window of someone's living room for 24 hours a day - you are being given a 5 second glance through a keyhole. A few people have talked about keeping perspective - well, I would encourage my readers to do the same and to think before you hit submit or send. Okay? Great, now moving on! :)

And some of my faves from Dawson and Macy's joint birthday party, a bit late LOL.

thanks and no thanks

2010-01-03T15:41:00.005-05:00

First of all, a huge thanks to all of the comments and emails of support, of sympathy and empathy. I can't express how refreshing it is to hear from others who have gone, or are still going through, the same things we are right now. Your words and offers of kindness lift me up when I need it most.

But I want to also say, to those who instead of feeling called to offer support and constructive advice to us feel the need to question, doubt, accuse or even threaten, either directly or through others, that this is my blog and my heart and just like any quick read out there, if you don't want to hear what I have to say then just close the book.

Despite Em's continuing issues, she is still quite a different child than we brought home 7 months ago yesterday. She smiles at us and everyone she meets, she greets people with the cutest approximation of "hi" you've ever heard, and she is overall a very happy little girl. Sometimes it's easy to forget about all the progress she has made, to get absorbed in the stuff we are still working on, but we are reminded often when family who haven't seen her in a couple months marvel at how different she is and how present she is now. I don't post about that much because well, I don't post much at all anymore LOL. And often I am driven to post because I desperately need to let my thoughts out of my head, to get them written down so I can let them go and start fresh again.

Adoption is not a Hallmark card. Especially when you're dealing with international special needs adoption from a second-world country. And I say that becacuse it needs to be said, because it begs for someone to say it. And I will keep saying it in every post I make - the hopeful ones and the miserable ones - because it is about time that people start figuring out how best to support reality instead of how best to work out the lumps it leaves after being swept under the rug.

If you come to my blog with a broom and a rolling pin, thanks but no thanks. It might be time to move on.

resolutions

2010-01-01T20:23:00.005-05:00

Happy New Year!!!

Resolution #1: update the blog more often (is anyone still reading? LOL) ^_^

The kids had a great Christmas! They were still a bit sniffly when the big day rolled around, but pretty much back to normal. They all slept through the night (except Holden of course!) and got up around 7 to attack the gifts under the tree. They are very lucky to have grandparents that love to spoil them - it makes managing gifts for six kids much easier (not to mention the fact that we have absolutely no room left for toys - you can't walk a few feet in our house without tripping over one of them!) I'll post some slightly-blurry pics (my camera lens broke - boo!) soon!

It has been a long week for Cade and Parker without school, but they made it through with the help of the aforementioned toys hehe and a few fun excursions - in fact at this very moment Matt has them and Macy at a new place we discovered filled with those ridiculously large blow-up jumping things. I was so happy to find out about this place as it's a great way to burn some calories (and energy!) Now if only they made one for grown-ups ^_^

Resolution #2: lose some weight! :)

I haven't talked much about how things are going with Emerson, partly because I don't have the energy most days and partly because it feels too depressing to even write about. We've really been struggling over the last few weeks and it's starting to weigh down on me.

Despite us continuing tight swaddling, her poor sleep reached a point where we were considering creating a makeshift room for her in the downstairs part of our house, away from the other kids, so she would stop waking everyone else up. She would wake up around midnight or 1am and lie there for hours kicking her legs (as a unit, since they were swaddled) against the crib bars, thrashing her head or slamming it back against the mattress, grinding her teeth and moaning (we call it her zombie noise, as that's what it sounds like - uggggggggghhhhhhhhh...) Some nights she would like there for over 2 hours before finally falling back asleep. We finally took the advice of some of our therapists and picked up some Melatonin at the store - after 2 tries of low doses we found success with 2 tablets (6 mg) and she has been sleeping through the night for nearly 2 weeks now.

We were hoping this improvement in sleep might also improve her daytime issues but unfortunately there is no end in sight to her hit-and-miss eating (she is taking some textures now but often inexplicably screams inconsolably if we start to feed her something she just doesn't want to eat and then won't take anything else - she was up to 19 1/2 lbs but is now down to 17 lbs. Yes, 17 lbs. She went down a diaper size and now sadly fits into Holden's size 2 diapers) self-injurious behavior (right before Christmas she hit the corner of her eye on the coffee table during one of her head-banging episodes, resulting in an enormous black eye) and the grinding... oh, the grinding.

Emerson grinds nonstop now, even using the other side of her mouth sometimes (it was usually just her right side). It is so loud that it can be heard across the house, through closed doors and often over other sounds like 5 other noisy kids and the TV. She has gotten progressively worse over the last few weeks and is now to the point where she grinds every 3 to 5 seconds, hour after hour after hour. If she's hungry or tired or in any other way particularly unhappy she will grind back and forth like a saw, taking a few seconds break here and there. Nothing we do or say stops it.

I cannot really describe how awful the grinding is for me. I guess like her I have my own sensory issues and one of them is grating or high-pitched sounds. After a couple hours of listening to it I feel like I am going to join her in bashing my head into the nearest wall. Trying to poke fun, but it's really not funny at all. The grinding is a wall between us and as long as it has continued I haven't really bonded with her. I care about her, I worry about her, but I don't feel connected to her. I feel disappointed, discouraged, hopeless, frustrated, resentful and more often these days, downright depressed about her. Worse still, the grinding seems to be affecting our entire family - Macy has done it a few times now and a couple weeks ago my little Dawson was sitting next to her, watching as she went back and forth, and then he grinded. I thought my heart would burst and I just started crying. Dawson is so lucky to have great teeth and great communication skills - the thought of him learning this behavior is too upsetting for words. He has done it a few times since then, but he knows he's not supposed to so a firm "no" stops it.

I dread going anywhere as a family because she gets particulary intense in the car and in that small space it is hard to drown out the sound. The other kids complain about it and Cade has gotten very upset a few times (I can't blame him, the poor guy sits right next to her.)

I don't know what to do anymore. We made an appointment with a different pediatric dentist for a few weeks from now, someone who came recommended as working with kids with special needs. I feel like she is our last hope at this point. Emerson needs a teeth guard or if there is some filling that can be put into her teeth to dull the sound - if not to save her already severely poor teeth but to save my sanity.

I do still think about disruption - several times a day - but I don't want to want to do that, if that makes sense.

Em is in her own little world again. Not because she is staring off into the distance - she doesn't do that anymore, she is very aware of us now - but because of the grinding. It is consuming her and consuming us. These last few days I have ended up putting her in her crib and closing the door to the room for an hour or so, coming to check on her every once in a while to see if she has stopped and, finding the grinding going constantly still, give her some new toys. Getting away from the sound of the grinding is the only way I can function to parent my other kids. And yet all I can think is that it is like she is in an orphanage again, sitting alone in her crib, scraping away at her teeth and banging her head into the rails, while life goes on a few feet away desperately waiting for her to join in.

Resolution #3 - save Emerson.

notes from the infirmary

2009-12-21T00:20:00.002-05:00

Sick kids. Again.

Matt and I started to forego presents for one another years ago, but this year I really, really want just one thing - healthy kids!

It started with Parker last Tuesday, a pretty bad cough and runny nose. We kept him home from preK on Thursday and Friday. By Wednesday night Macy had it, by Thursday Holden had it and by Friday Dawson and Emerson were right there too. Holden fared the worst and for a while we thought about taking him to the ER and facing the possibility of spending another holiday with a child in the hospital.

He slept all day Friday and Saturday - literally, we had not seen his eyes in that long - but finally Sunday morning he opened them and was looking around, very miserable and unsmiling but still alert for once. His congestion is nearly gone now and he took his first full 5 oz bottle of breastmilk just a few hours ago. Emerson is sounding better and Dawson is still battling an awful dry cough but it seems to be running its course.

We're thinking it was most likely RSV since neither Matt, I nor Cade got it and it got progressively worse with younger age.

I am so tired of sickness, especially around holidays. Last Christmas was spent cleaning throw-up off new toys LOL, so hopefully this will clear soon and it will be out of the way by Friday.

It's after midnight, the kids are all asleep (for now) and the house is a complete disaster. Ah, motherhood. ^_^

first smiles

2009-12-17T22:14:00.001-05:00

two

2009-12-14T00:19:00.002-05:00

Just a bit late in posting, but Happy 2nd Birthday to our beautiful Dawson!

It seems forever ago that he was being born in our bedroom, tumbling into my hands and bringing a whole new world with him. I can hardly remember the feelings that overtook me when I first felt certain he had Down syndrome... though I admit as he gets older there are times I feel that again; times when he is frustrated pushing his little walking toys around because he can't get his feet to obey him, times when he is so congested we can only wonder how he can still be so cheerful - in those times I have to fight back tears pouring out from the mommy bear inside me that wants to drag that chromosome out of his body, kick it around a bit and put it out with the garbage. I always felt he had such a reason to be here, great lessons to teach, but more frequently these days I feel selfish for him and wonder why he should have to work so hard to give such a great gift to others.

But in the end he is much more than a living map for finding the meaning of life - he is Dawson, just my Dawson, and he is perfect.

It seems right to close this post with some words written in his baby journal when he was 3 months old. They are still so true! ^_^

I am so grateful that we found one another. You have made me realize what true, unconditional love is and have made everything in my life so much richer.

I envy you, Dawson. You change the world and bring happiness to people just by being you. What an incredible power you have. Use it wisely my sweet boy. You are going to have such a beautiful life!

blessings, birthdays and bugs

2009-12-09T02:06:00.007-05:00

November come and gone - and geesh, what a month! Time for some updates!

We celebrated the 3rd birthday of our spunky little princess, Macy, on the 12th! I can still remember that desperate longing for our lucky #3 to be our first daughter and the disbelieving joy at finding out it was! :) She continues to take advantage of that royal role and work on her bossing skills. ^_^

What was supposed to be another happy and uneventful Thanksgiving turned into a bittersweet stressful time as our little Dawson spent that day in the hospital. He'd been fighting with a cold for over a week and fevers around 102 for a few days. We took him to the doctor Tuesday night, fearing H1N1, and got a prescription for Tamiflu. Then very suddenly late Wednesday night he woke up with a fever approaching 106, vomiting a little blood and staring at the ceiling blankly, not responding to his name. Matt rushed him to the ER while I stayed home and worried, imagined worst case scenarios, cried and tried very hard not to imagine life without him, the feeling of the earth falling out beneath me and the anchor of this little boy letting me go to be set adrift. Matt did his best to keep me updated from the ER; it was a long, sleepless night. In the end the test for H1N1 came back negative and his bloodwork looked normal - he ended up being diagnosed with bacterial pneumonia and spending 2 days in the hospital.

Matt and I switched every 4 to 6 hours at the hospital and I couldn't help thinking how Emerson spent a month in a hospital around the world with the same diagnosis without a mommy or daddy to hold vigil at her side. Dawson was a trooper but clearly wanted to get home - he was cruising around his little jail cell and getting bored with the toys we brought. His fever stayed down, his lungs stabilized and he was released on Saturday. When I asked him, "Bye-bye home?" he started clapping happily and before we left he was waving to the IV machine saying bye-bye LOL. He's been doing great since, other than some pesky diarrhea from the antibiotic he just finished.

Thanksgiving wasn't Thanksgiving without him (and Matt, who took mealtime duty) but in the end we had the best thing for which to be thankful! He was home in time to enjoy his joint birthday party with Macy on that Sunday - his birthday is coming up soon but for now we have 6 kids ages 0, 1, 2, 3, 4, and 5 LOL!

Our little Dawson is doing great, he is cruising everywhere and walks around behind his push cars all by himself - independent walking is SO close! :) He is still gaining lots of words and has the best sense of humor. He loves to play on the couch, rolling around and working those muscles LOL, and a couple weeks ago he fell off - not too hard and he didn't cry but I rushed over and he lay there on his back looking up at me very seriously and said, "And down." Hehe what a cutie! He understands "fast" and "slow" now and will sing and rock with you to Row, Row Your Boat both fast and slow - I'll have to get a video sometime, it's so adorable.

Emerson had the same cold which she has made through unscathed other than a terribly runny nose combined with her dry skin to create an awful bleeding spot at one nostril. She is doing well overall - despite her sometimes major feeding issues, she is up to about 19 1/2 lbs. She is still eating baby food, but she now accepts it with crushed up cheerios or crackers mixed in - an absolutely huge leap for a child who a few months ago would scream for an hour if she had even the tiniest crumb put on her tongue. She is slowly getting desensitized to texture and I am feeling a renewed hope that we might get her eating some table foods by her 3rd birthday. She has even started lateralizing her tongue and making some rudimentary chewing motions while eating. She's drinking much better with a straw now and gets all of her fluids that way.

She has a very cute greeting that sounds like "hi," sometimes waves bye-bye and sometimes signs "more." She understands a lot more than she expresses - especially NO! LOL She is still grinding her teeth, sometimes really badly, and she is still hitting things into her head/hitting her head into things - the other day she hit her face into the metal railing at the top of our stairs and gave herself a little black eye. The only positive thing was that she cried. She usually seems to be oblivious to even the worst bumps. We have to swaddle her very tightly at night or she will wake herself by thrashing, kicking and hitting her head. She's now discovered that even when we take toys away and move her from walls she has the floor - she will sit with her legs spread and bang her head repeatedly into the floor.

Despite all that, when she is engaged she is really engaged - she makes good eye contact, tracks everyone and laughs and smiles and she'll crawl into the noisiest room to be part of the action. She's pulling to stand a lot and we will likely be getting her orthotics to help with how she stands on the absolute sides of her feet.

Somedays are really tough with her - days where I feel certain she is just a head bang away from a dual diagnosis of Autism on DS and I don't know how in the world I will deal with this - and other days are good days, ones where I marvel at how much she has changed and feel determined not to give up on a good challenge. With all the chaos of the past two months I am a bit behind on our 6 month post-placement report. Sometimes I am not sure what I will say, sometimes I am writing two reports in my mind - the one I will send and the one I really want to write... but wow, 6 months.

Our other kiddos are all doing great, including the Cutest Baby Ever - he is closing in on 13 lbs and starting to smile. Ah, how time flies. Other than some fussiness at night he is a pretty easy-going guy and Matt and I are constantly trying to wrestle him out of each others arms LOL. We're not taking away the possibility of another baby or two in a few years depending on our circumstances - yes, Holden is THAT cute! :)

Enjoy the pics, there are a ton more to come hopefully soon! ^_^

boo-tiful babies

2009-11-03T20:27:00.003-05:00

Although the three littlest ones and I stayed in on Halloween (Dawson and Emerson have both had yucky respiratory infections), I still had to get them dressed up for pictures. Emerson *really* disliked her little bat costume LOL. Dawson didn't mind his devil costume, though he didn't care much for the head gear, and he looked so hilarious scooting around the house on his butt with his little wings flapping behind him hehe. ^_^ Holden had the comfiest costume of all - a ghost! The older three had fun trick-or-treating just with Dad and brought home the most candy thus far in their short Halloween history.

Emerson had her ear tubes placed last Wednesday - the ENT said it was the worst case of fluid/pus build-up he's ever seen and the surgery took him the longest it has ever taken in his many years of practicing. Her ear canals are so abnormally tiny (even for a child with DS) that he almost couldn't fit the smallest instruments made into the left ear. Otherwise the surgery went smoothly. Since then things have been downhill - really puzzling for us - with a return of the teeth grinding with a vengeance, even more head banging and other self-injurous behavior than usual (including biting through the inside of her cheek with her scarily sharp new teeth leading to a thick sore that is only now just healing) and overall misery. She no longer wants to eat anything and some days we are lucky if we can get 3 jars of baby food into her. I don't even want to know how much she weighs now. She has her follow-up appointment tomorrow morning so we are anxious to find out if there are any problems to be seen or if this is just another inexplicable issue for her. In my postpartum hormonal state these issues are especially frustrating and upsetting for me, but what can you do?

Holden is doing great - he has already surpassed birthweight (I must make cream, not milk LOL) and though he still sleeps most of the time he has more periods of alertness. And he is absolutely the most gorgeous baby ever - he looks *exactly* like Macy as a newborn, including her strange and beautiful almond eyes that she inherited from my side of the family. I am so in love with this little guy, he almost makes me want to have another (*almost* LOL!) ^_~

born free

2009-10-26T21:08:00.006-04:00

"The future is not something we enter. The future is something we create."
L. I. Sweet

Introducing...
Holden Brady Schafer
Born October 26, 2009 at 9:20 AM
9 lbs 2 oz, 21" long
14" head circumference
Apgars 9 and 9
Labor of 2 hours, 35 minutes

A certain little someone at last decided to join in the chaos of our household!

Just when I was starting to feel certain this would be the first and only time I got to experience being "overdue" (which I know is quite silly because medically speaking a woman isn't post-term until she is 42 weeks and 1 day, but still - we do give some sort of magic to that little due date, don't we?), and after several false starts including one that had us almost fill up the birth pool a week ago, this morning I woke up far too early with Emerson at 5:45 AM and promptly lost my mucous plug in a gush. After doing a litmus test to make sure it wasn't my membranes rupturing (it wasn't), I woke Matt up to tell him the gross - but nonetheless exciting - news.

I felt a bit crampy and my lower back was aching and about 6:45 the cramping fell into contractions. They were uncomfortable enough to have me wandering around the house whining to myself while Matt tried to get the birth pool filled as quickly as possible. Whenever he had the audacity to ask, "Are you sure THIS is it?" my uterus responded by turning up the discomfort. About 7:45 the pool was ready and I threw myself in LOL, still sort of expecting the fast hour that greeted that action with Dawson. I ended up with 1 hour and 35 minutes instead and just like the additional 1/2" of Holden's head circumference, the extra did not go unnoticed.

Dawson's birth was not what I would call "painful," though I think the fog of forgetfullness makes it easier to say so now, but his contractions were short and sweet and quite predictable. He was in a rush to get out and it made the whole experience much easier on me. Holden, however, seemed perfectly content to stay put as long as possible and the contractions were random and often very long, sometimes piggy-backing on one another and leaving me in a constant state of suspense. This time they HURT and from about 8:30 onward I was one long string of whines and chants of I-can't-do-this-I-need-an-epidural. I think it must have been around 8:50 when I stood up and shamelessly proclaimed that I was going to the hospital and would get that epidural - only to realize I was incapable of walking at that moment and dropping back into the water with the next contraction. Somehow through all this I did manage to monitor his heartrate twice, noting good variability and no concerning decels.

Pushing with Dawson was a breeze - it was 7 minutes of calm relief. Pushing with Holden was rough - still just 15 minutes, but there was no relief, just awful pressure and at last that mythical Ring of Fire I've always been able to avoid. He was nearly a full pound heavier than Dawson so I'm sure that had something to do with it - he also decided to keep his membranes intact until his head was out and I felt like I had to hook a finger around his shoulder and help him rotate his body. And then it was over and he was in my arms and pink and screaming with the slightly shocked faces of three of his siblings peering down at him from our bed beside the pool. (While I labored most of the time alone, we decided to let Cade, Parker and Macy witness the final few minutes with Matt while we listened to Dawson and Emerson playing happily in the baby room on the monitor. They thought it was the coolest thing in the world for about 2 minutes, until they heard the theme song for Dora the Explorer on the living room TV heh!)

He scored great on his Apgars and this time the placenta came easily 20 minutes later. And despite his bigger size, this time I had not even the slightest skidmark! Pretty quickly afterward we were all cleaned up and resting on the couch while Matt took care of the rest of the little ones. Holden nursed great and then promptly went to sleep LOL.

Overall a great birth, though one that left me extra-positive that IT WAS THE LAST!! ^_^

Tomorrow's agenda includes Holden's first pediatrician visit (which is another story for another day involving our malpractice-paranoid pediatrician), a visit from my parents and sister, labwork for Dawson, a field trip for Parker and back to normal for everyone else! :)

Oh and he looks EXACTLY like Macy did as a newborn!

catch-up

2009-10-10T00:44:00.001-04:00

I have many excuses for my (seemingly unusual, if you were reading my blog this time last year) long silence... they start with Busy and end with Busy, with two colds thrown in between and an awful lot of pregnancy-induced moodiness that has me wanting nothing more than to spend the few hours after the kiddos are in bed curled up on the couch zoned out to and/or ranting along with my favorite left-wing liberal media shows on MSNBC. :P But with our lives about to get even busier, it was time to sit myself down and get this posted!

Cade is doing very well in Kindergarten - he didn't have a hint of nervousness that first day getting on the bus; he's a pretty independent and adventurous (albeit shy and quiet) kiddo so I guess I should've known better than to worry over him. Social skills are his weakest link but he does seem to be opening up more with his classmates and interacting. He's so funny, he seems to know how important this issue is for us - yesterday while heading out the door to the school bus I called after him, "Have fun!" and he responded with, "I will! And I'll talk to a lot of kids!" Hehe. :)

Parker screamed for 15 minutes the first day we dropped him off at PreK. 5 minutes on Day 2. Not at all by Day 3 and he's been fine ever since. He really loves it and is a much more social creature than his big brother so he's not having nearly as much introverted trouble as Cade did early on in PreK. There is a disproportionate number of girls in his classroom and I think they may have noticed his adorable dimples - the other morning while dropping him off three little girls were chiming, "Hiiii Parker" as soon as he walked in the room.

Macy was a bit depressed the first couple weeks of school - it was obvious she really missed having her older siblings around and there was a lot of extra fighting going on when the boys got home from school. She seems to be adjusting now though and she likes the Mommy & Me tumbling class we go to each Saturday (no, no tumbling from this mommy LOL) and we're very glad we signed her up for it as it's become clear that she is going to be our toughest send-off to PreK next year; she has all of Cade's shyness combined with all of Parker's clingyness and though she's now happily jumping around the gym course, she won't really interact with the other kids and prefers to wait until they've moved on to another area before she plays.

Dawson got the brunt of our latest cold, down in his chest for over a week. He has another psych eval coming up next week since we declined adding a Special Education teacher to his services last eval. I'm guessing about a 6 month delay or so. He's doing so many neat things, it's easy to forget where they say kids his age are "supposed to" be. He has a great vocabulary, over 50 words, but he only uses it when he feels like it. He has a few two-word combos like putting "a" and "and" in front of words and "thank you" of course. He understands a few commands and this weekend followed his first complex one when I asked him to go get Emerson's shirt (which he'd tossed a few feet away) and give it to me. He just looked at me sheepishly at first but then I repeated the command and added "Look!" with a point at the shirt first and that did the trick - he scooted over and grabbed it, scooted back and handed it over. He is a doll baby. :)

He has been giving tons of his open-mouthed kisses, grabbing my face and covering me with drool LOL. He has really started to show how much of a sweet and sensitive little soul he is - if one of the other kids is crying he gets very concerned, leans over and looks near-tears himself. The other night Emerson managed to cut her lips on the sharp edges of her teeth worse than usual and as I was holding her trying to stop the bleeding Dawson was leaning over and planting kiss after kiss on her cheek. It was so sweet and it made me feel so much smaller than him, as I think I've grown a bit immune to all of her self-injuries.

Em is doing... pretty well, I think. Physically she's progressed so much - she pulls to stand on anything she can, even climbs up on top of toys and boxes and tries to get up on the couches LOL. Mentally we are getting there, though she has days where she really regresses. She has definitely become more aware, especially the last few weeks; she has very few moments now where she sits and stares into space as if she were the only person in the universe. She still has a lot of institutional-like behavior, i.e. banging her head against walls, banging toys into her head, poking herself in her eye repeatedly and pulling her hair very hard (especially when eating.) It feels like just in the last week we've turned a corner as she has been so THERE with us, doing less teeth grinding and much more babbling and happy vocalizing. When the therapists come into the room she gives this adorable joyful greeting that sounds very much like "Hi-i-i-i-i!" complete with inflection at the end. The little girl who hated to be held initially now opens her arms up to strangers.

We were still having so many problems with feeding - she basically figured out that the bottle was always an option, so she started refusing all baby food including ones she seemed to like, and then wasn't eating the bottles consistently either - we decided to take away the bottles completely one day. It was a tough decision because I am always so (maybe overly) concerned about her weight gain, but we just couldn't go on like that anymore, especially with a new baby coming. The first week was a bit bumpy and she lost a bit of weight, but now nearly a month later she is a baby food-eating champ. She eats between 8 and 10 jars of Level 2s each day, exceeding 1000 calories the last several days. She not only gained back what she lost but has broken the 19 lb mark. :) Our new challenge is liquids - she basically refused any at all the first couple weeks and we ended up forcing her to get a few ounces sip by sip throughout the day. She's doing better though and now drinks several ounces of apple juice through a straw on her own.

I hate to jinx anything, though I try to keep my expectations for tomorrow and beyond safely neutral, but today was the first day since the behavior began that Em did not grind once. :)

She had her second appointment with the ENT earlier in the week to see how the drops had worked on the impacted ear wax. Good news is the wax was cleared, bad news is she still failed her hearing test, even considering her as a 6-month old. Meaning, she has to have tubes placed. The surgery is under general anesthesia and is tentatively scheduled for 10/28. I'm nervous about that and luckily she has a cardiology appointment next Wednesday so we can talk about the use of anesthesia with her heart defect, but mostly I'm scared the tubes won't solve the problem. If it's not a matter of built-up fluid, we will then be sent to a "super" specialist in Syracuse or Philadelphia for her to have a brain-stem test to see if there are bigger issues behind her lack of responses. We will hope the tubes are all that is needed though.

I think I am coming more to terms with her delays and her specific issues. Dawson had an EI meeting this past week where I got the customary progress reports on his development. And it is always hard that first day to see the delays in print, to see them growing larger as he gets older. And for just a few short hours I can feel the wind knocked out beneath me and the fear of the unknown of Down syndrome creeping back. But then as I am rocking him to sleep and he is tickling my hand and smiling up at me with those big brown eyes, the reports get burnt up in the radiance of just how much I love him, and I don't care how big the number is before the percentage sign and know that I never will and the fear is defeated anew. And though I will always be so much smaller than him, he once again pulls me up a bit taller by reminding me of what is really important, and telling me wordlessly to feel the same way about Emerson. I am so lucky to have Perspective come in such a beautiful package. ^_^

alive!

2009-10-07T00:04:00.003-04:00

Just a quick one - we are all alive and doing well and I have been working on a proper update post with new pics over the last two days - so far. I'm running low on time (and energy) these days, so sorry for the blog winter.

Holden is still cooking - we are now full-term! ^_^ Hopefully I'll get an update posted before I have to write up a birth story LOL! :)

crazy days

2009-08-30T21:42:00.009-04:00

Wow I've become a stranger to my own blog! Sorry about that! Life with 5 kids is pretty busy, to say the least. The summer seems to have rocketed by and now we are only 1 1/2 weeks away from school starting - Kindergarten for Cade and PreK for Parker. With the 20 minute drive each way for PreK, two non-walkers going on three and a belly I can no longer bend over, I don't see any relaxation in my immediate future LOL. I thought I'd best get in an update on us though before true chaos sets in.

Cade is nervous but excited about Kindergarten; we've spent a lot of time this summer working on helping him with basic skills so he feels more accomplished at the start - he can usually identify his whole alphabet now and is even beginning to sound out simple words. Fine motor has never been his strong point (hence him receiving OT and continuing to do so this school year) but he has made a lot of progress with writing his own name. He knows so much but is rarely willing to show it to his teachers. He's shy and perhaps a bit too introspective and deep-thinking for his age (hmm... I wonder where he gets that from?) so I worry about things like sitting on the bus, who he will eat with at lunch, etc. I wasn't much moved by him going to PreK last fall but the thought of Kindergarten can send me into near-tears everytime. My big boy!

Parker is er... less than thrilled about starting PreK. Although he has a sweet, bubbly personality with people he knows (though he seems to be going through a minor identity crisis, as I think he feels pushed out by Emerson's high needs and anticipates less attention with Holden due so soon) he is much more of a mechanical-minded child than a social one. Luckily we were able to get him in with Cade's former teachers so he does know and like both of them. He's also going to be starting Speech Therapy (he's the last one to do so - now every single one of our kids has at least ST!) and will be working with the same therapist who saw Cade and sees Macy. So he will at least be surrounded by adults he knows. Hoping his transition is not too hard on him - and us!

Macy is doing well and hitting the Awful 3s (what the hey are the Terrible 2s anyways? 3 is the big number in our house!). She had her 6 month re-evaluation for Speech and has made some improvement with articulation and as with Parker both expressive and receptive were above age - she actually came out 9 months ahead for receptive. We're hoping to get her into a dance or gymnastics class so she has her own little activity to look forward to with her beloved big brothers both in school. She is the queen in the Shy Department so we are hoping to get her a bit more open to new experiences before she starts PreK next year!

Our Dawson is wonderful as ever. He seems to have at least two or three new words each week and has gotten a bit more expressive with the therapists (he is normally such a quiet observer of people outside the family), he has twice now informed his Physical Therapist with words and sign that he is "ALL DONE!" hehe - little stinker. He sings "Row, row, row a boat" while rocking whatever object he deems worthy of pretending to be a boat, I will have to try to get a video and post it as it's simply the cutest thing in the world. He says "Thank you" all the time now when we put his food in front of him or hand him a toy - adorable now but yeah, all our kids are polite until about age 2 1/2 LOL. He is big on referential pointing now, he points to everything when we're out and asks, "That? That?" while we name every object we can for him to store away for future use I suppose. He has rediscovered his reflection in mirrors and will spend at least 5 minutes making silly faces at himself and laughing hysterically. We are still waiting for those days of walking - he pulls himself to stand much easier now and sometimes will cruise a bit to the side on the coffee table and will take assisted steps when we say "Walk" but balance and weight change are a lot of work for him - not hard to understand since he's 26 lbs and at least 32" long. It's got to be tough figuring out how to get all of that moving LOL! ^_^ I am still hoping a bit he might be starting to walk independently by his 2nd birthday, but he'll get there when he's ready. For now he is commando crawling when he wants to, scooting forward and backwards (very fast LOL) when he feels like it, and I can only thrill at his communication skills and revel in how much delight he takes in his world.

Little Emerson is a study in contrasts. Some days I could rush to the laptop and post about what great progress it seems we made, but others it feels like the progress has been pulled out from under us - and then some. The one major development is that she is eating baby food! I should qualify that statement quite a bit, I suppose... she eats some baby foods very well, when she wants to LOL. About two weeks ago she went through a frustrating bottle strike where she basically had 2 bottles each day for 2 days straight and then suddenly the next day when I offered her a jar of Turkey Tetrazzini she had discovered how to command her tongue and ate two jars of the stuff with barely pushing out a drop. We have since come to realize that there is more to Emerson than meets the eye. I honestly do not think she was incapable of eating baby food when we first came home - I think it was simply that she did not care for what we were offering her. She has a few hard favorites now and we continue to try new things and she continues to stubbornly spit out and cry at anything she doesn't like, no matter how hungry you'd think she should be. I admit it's a bit frustrating but it's progress regardless and we're happy for that. She was 18 lbs 3 oz at her check-up last week.

Emotionally it feels like we're struggling more and more these days. Her teeth grinding has gotten so bad it usually leaves my nerves completely frayed at the end of the day. It's hard to believe anyone can grind teeth so loudly, so slowly and deeply - especially since it is only being done with one top tooth and one bottom tooth. If you can imagine someone scratching long, jagged nails down a chalkboard right next to you, over and over again for about 30 minutes of every hour for 10 hours each day... then you might have some inkling of what we endure each day. She has actually been grinding so hard that she has caused the bottom tooth to bleed several times. It was pretty unsettling last week when I went in to the room at night to check on her since she had not yet fallen asleep and was grinding particularly loudly to find her face and shirt covered in blood. We thought she was grinding a hole into her lower tooth.

She finally had her long-awaited dental appointment on Friday and as always, it was good news/bad news. Good news is her teeth and gums are actually still healthy with no obvious decay and there is no apparent damage to her teeth yet from the grinding (apparently she has a bit of gum caught over the lower tooth in question which is what is bleeding, not a hole). The bad news is this means there's nothing they can do about it but hope that it stops. The dentist was a bit surprised by how few teeth she has (only 8, compared with Dawson's 14 going on 16) but that might just be due to poor nutrition. The bottom teeth are also angled so much and her gums are so short that she often cuts her bottom lip on them... again though, nothing that can be done. We have tried consistently gently but firmly squeezing her cheeks and saying NO each time she grinds, I've tried doing some gentle gum massage and vibrations... she dissolves into tears each time but within minutes goes right back to grinding.

It's always nice to feel like we've escaped one more huge medical issue, but it's also disappointing to know the problems we did get are the ones that can't easily be fixed. I've come to the conclusion that somehow, although cognitively she's barely a 6 month old, she has come to use grinding as a tool of manipulation. I suppose it's not that surprising - kids in institutions probably get much better use out of quickly learning attempts at manipulation than true communication - but it makes it all the more frustrating. I think she's a bit jealous of Dawson, especially as I rock him to sleep at night, so I started rocking her first. It was nice to have her fall asleep in my arms, a silent trust that had finally been earned, but everytime I put her down carefully she immediately wakes up... I then give Dawson his turn and she sits in the crib pressing her face against the bars, watching us. After a minute she starts grinding her teeth harder than ever, slowly, seemingly painfully... so much so that my teeth usually start aching and I have to press them tightly together to try to relieve the pressure. She does this constantly in between giggles and pulling up to standing against the crib rail. At first I was responding - getting up with Dawson and laying her back down and telling her no, night-night. But then I realized the pattern to her game and I now sit there, eyes shut tightly, teeth pushed together and silently chanting to myself, I will not respond to this, I will not respond to this, I will not respond to this... she does not give up until I lay Dawson down and leave the room. She rarely babbles anymore; she simply grinds. And though we all try not to react to it, to not try to reward any attempts at using this as a form of communication and manipulation, oh my gosh is it hard to hear it all day and not try to do SOMETHING to make it stop.

She has days where she makes such good eye contact and interacts more with us and even with toys, and I get so excited and start to think perhaps we're coming upon that turning point... but then the next day she wakes up seeming to have regressed, her eyes refusing to look at you, sitting there grinding her teeth and poking herself repeatedly in the forehead with one finger absentmindedly. When she does that I go overboard with trying to tickle her, calling her name over and over, as if she's gone behind the curtain and might be lost forever. Usually she looks around me, unmoved. It's strange, it's scary and it makes me feel like it will always be like this. Dawson has finally started to attempt interacting with her... tonight at dinner he reached over and tickled her foot (oh, he says "Tickle tickle tickle" too in the most adorable way LOL) and stared smiling at her face, seeking her eyes... she wouldn't look up at him. He tried a few more times before he gave up and went back to eating and communicating with us. I felt sad for him, and for her too. And though I think I've reached a point of peace with the journey we're on, I feel unable to truly bond with her, unable to truly love her with a mother's love instead of simply with a worldly love, a humanitarian's love. I know other moms have felt the same way and that time is the only cure for that, but sometimes I wonder if this too will be an undefinable problem, a thing that cannot be fixed, even by time. We just hope.

Holden is doing well, very big and very active. I'm only measuring 2 weeks ahead in the height of my uterus but that's mostly because he's lying transverse right now - I have no silly notions of a little baby. :) I am guessing I will go into labor closer to 38 weeks, which is very scarily about 6 weeks away. I still need to get that birth pool ordered and the cord scissors and we need to get yet another crib for our growing collection LOL, but otherwise I am very much ready to NOT be pregnant anymore!

This post is long enough, but the last piece of news is that we got a kitty two weeks ago! We'd talked about getting one for Christmas for the kids but a trip to the pet store for some dog food ended up with the adoption of a 5 month old beige tabby. The kids named him Alex (after the boy in Signing Time), a close second to Butt, which Matt and I unfortunately had to veto. ^_~ Luckily he is a very sweet and tolerant cat, loves the attention from the kids and doesn't twitch an ear when his tail is mistaken for a pull-toy. Meanwhile, I'm enjoying the pregnancy perk of avoiding litter box duty. If only that could last forever... :)

Some pictures! (I'll get some new ones of Cade and Parker on their first days of school!)

Had to do a before/after of Emerson eating baby food. The top is from nearly a month ago and the result of her thrusting everything out with her tongue. The bottom is her happy after finishing a whole jar with hardly any mess. :)

Introducing Butt... er, I mean Alex!

Oh yes, Alex is a strange cat... I'm beginning to think he is truly a dog's soul trapped in a cat's body. :)

second chances

2009-08-09T12:17:00.000-04:00

Two birthdays in two weeks! Our little engineer Parker turned 4 and tomorrow Miss Emerson will hit the big 2!

I have received many comments and emails since my last post; most supportive, some a bit more critical, but I know all coming from the same place - honest concern for Em and our family. So while a few of the comments I haven't agreed with, I do appreciate all of the concern.

Every child has taught me something unique. Parker taught me to believe in second chances. Cade was a complete surprise (in fact, at the time we didn't plan to ever have children!) and he both opened my eyes to the wonders of parenting and to the negative consequences of trusting others over yourself and following blindly without thinking. His pregnancy was riddled with fears and worries and a sense of helplessness as we watched pre-eclampsia spring up. I sat on the table in the doctor's office like a lamb, never learning anything for myself, never questioning the best practices for handling what I was experiencing, and worst of all - never making any decisions other than at the end when I refused to go on bedrest (it's unproven, and I knew the added stress of lost income would only make my blood pressure go up further). But even that one decision left me feeling unsure of my own judgement until a second opinion with a perinatologist backed up my own instincts.

After Cade's birth I couldn't wait to do it again. I saw what I had failed at - not the pre-e, not the induction, not the c-section - but the means to those ends that I never took control of so I could say later yes, this was the best outcome possible. Parker was my second chance to "get it right."

And I did get it mostly the way I wanted it, with a few bumps that had to be worked out with Macy's and Dawson's pregnancies, but as I held Parker in my arms that July afternoon after birthing him vaginally, I realized how wonderful second chances were just on their own. Without comparison to the first, his experience stood in its own brilliance. It was never about getting it "right," after all, it was merely about doing all I could to bring us both through happy and healthy and no matter what happened, being satisfied with myself for trying.

Emerson is like a second chance, too. A chance to realize that sometimes things are not in our control, however much we wish and wish them to be so, and sometimes we just have to accept that and move on and work on what is within our power. The hardest part is knowing that we thought she'd be ours last October - we were told she'd be ours last October - and seeing all that time lost and knowing I can't get it back. But that time is gone and there's no point in dwelling on it anymore.

I do have 4 other children, and they're all 5 and under. A few people suggested to me that Em *should* get all my time and attention, or the vast majority of it. But my other children are also at a vulnerable age, an age where they too desperately need me, and neglecting them in any way in favor of another child is not an option - not for Dawson, not for Em, and not for Holden when he comes. It might mean Em doesn't catch up as fast as she would in a family with older children or no other children, but we are her family and all we can do is the best that we can and be satisfied knowing we did.

I also think some readers may have misunderstood the nature of most of our frustrations. It is not merely a matter of functioning - that it is somehow worse to parent a child with greater delays - but it is different and new to me and just as we can understand a new mother coping with the diagnosis of Down syndrome, I think we can understand the emotional chaos that ensues for most people when faced with the challenge of an adopted child with serious needs they were not aware of beforehand. Honestly, if Em was just as verbal as Dawson but still had the feeding and emotional issues, it would be just as overwhelming. Or if Dawson didn't say a word but ate well and made eye contact, I would still not feel as helpless with him as I do with Em.

I want Em to be healthy. I want her to be connected to her world. And the rest can come later, or not at all.

Since we scaled back our baby food attempts, we are all less overwhelmed. Em is taking her bottles much better and though she is still trying to eat with her tongue LOL, she is now able to draw liquids through a straw - she even picks up the cup herself! Granted, she doesn't quite know how to keep the liquid in to swallow it, but considering that 2 months ago when we placed a straw in her mouth she merely made an open-mouthed grimace, we are all very impressed by and proud of this new accomplishment. :)

She has also crossed the 17 lb mark!!! She is starting to show some chub and it is such a relief to see.

We are making slow progress with getting her connected to her new world, she does make much more eye contact now and she has learned to anticipate tickling and even "I'm going to get you!" with smiles and giggles. We did have an audiology exam done a few weeks ago and she responded to absolutely no sounds and we discovered her ears are so impacted with wax the audiologist could not test the vibrations of her ear drums. So she might just be cognitively too young for the test or it's possible she does have some hearing loss. She has an appointment with an ENT in early September. And one of the sweetest developments - she now looks when you say her name 90% of the time. It was sad to see that she did not look at the caregivers when they said her birth name, so it is thrilling everytime her head shoots up now at the sound of Emerson. ^_^

I was so happy to hear from several moms who went through very similar issues - and conflicting feelings - with their new adopted little ones. Sometimes it is easy for a mom to also feel disconnected as she tries to navigate herself and another ship through unknown waters. So it is reassuring to see others standing on the shore, however distant it may be. :) We are getting there, at our own pace, and not without storms to weather, but still sailing.

Happy Birthday to our beautiful babies!

the other side of the rainbow

2009-07-31T20:28:00.004-04:00

(Parker just turned 4 yesterday, but as I'm behind now I will save a special post for him after his party!)

I have hesitated writing this post, though I've constructed it a dozen times in my mind at night, rocking and feeding Emerson in the dark of the girls' room. At first I was a bit afraid to share the truth, unpolished and rough as it is, and I admit I wasn't too keen on the possibility of judgemental comments from moms whose ranks I once occupied, the-ones-who-have-not-gone-through-this-before. But then I realized how much I wished I had read a post like this one will be, over one year ago when we set out on this "rainbow" of a journey wearing glasses just as jewel-toned. I watched so many other little ones come home, like the scenes in the movies, and though nothing was perfect, everything seemed okay. For some lucky ones who happened to pick a child with fewer delays or from a country whose institutions (because truly, that is what they are) had much better conditions, it seemed better than okay.

And maybe on one hand I'm grateful for never reading this post, perhaps it would have frightened me enough to jump headfirst off the rainbow and back to the ground where at least I was safe, and would not need to risk what might be on the other side. But then again maybe I wish I would have had the opportunity to read it, to get scared and to doubt, but then to be brave and continue on anyways, with a bit less of a shock at the end of the journey. Perhaps it is like prenatal testing though; there is nothing you can do to prepare while a reality remains an abstract. You can fear it, you can try to plan for it but ultimately you just don't know how you're going to deal with it until it happens.

After lab results confirmed my suspicions that Dawson had Down syndrome, I went through a spectacular grieving process. It was harsh but short and to the point. About three weeks later I stopped wandering around the house, zombie-like and sobbing hysterically, and started feeling more calm and more introspective. It was like the gears in my head started turning again and I was finally able to start working it out, to start seeing it through the philosopher's lense I've always liked to carry in my pocket. Another three weeks later and I was the phoenix, leaping up from the ashes of an old self with a newfound joy and a newfound sun in my sky. At the time I thought it was Down syndrome.

The last few weeks with Emerson have picked at all my beautifully constructed lessons learned and left me wondering if perhaps the epiphany of those few weeks was not because of Down syndrome, but just because of Dawson. Last year I dared to come to the conclusion that delays did not matter, struggles along manmade timetables for baby development were unnecessary. But I was a mom of a baby who was not that delayed, a baby who did not seem to struggle because he was present and blissful in What Could Be Done Now, an imp forever smirking at the future like it didn't bother him a bit. And so he released me from the parent's prison of worry - he had (and still has!) the future bottled up behind his angel's face, tossing us bursts and glimmers through his smiles and eyes. We don't worry about him because he looks at us and tells us not to. He sits there perfectly content, a blazing sun around which we helpless planets orbit, happy just to be near that confident warmth and hopeful just a bit of it might become our own.

I now know why I wanted to adopt a child with Down syndrome; why I wanted to adopt Emerson. Half of me felt shackled by a great cosmic debt, knowing how very little I deserved this special boy and wanting desperately to restore balance in my universe. The other half was pure selfishness, wanting to stuff another gleaming sun into the sky.

And I now know how hollow was my transformation after Dawson, the lessons that were true but were never truly learned. I squeeled in delight at the comfort of a pair of shoes I'd never actually put on. And I could not understand why any woman would fear or avoid them.

But Emerson is not Dawson. And there have been times in the last few weeks that I have felt she was the eclipse to his sun. Dawson made me feel hopeful for a world that needed change because he had changed me. With him I was Seventeen Again, an idealist on a mission to make a difference. Emerson was the expression of that hope. And then the reality hit - the reality of spending 45 minutes fighting to get a bottle into her tiny body as she deals with oral sensory issues I have no experience with, biting on the nipple, thrashing her head, throwing the bottle but then screaming and reaching for it desperately, grinding her teeth like her jaw is a piece of machinery. Attempting to feed her baby food is like feeding a tongue. There is no mouth, no lips, just this Tongue Monster determined to keep anything and everything OUT. At the end of each day I have literally spent 5 hours trying desperately to get nutrition into this 16 lb two-year-old while she fights demons I can't begin to see. Eventually I came to the realization that my time and energy was being drained away from my other four kids to be thrown at Emerson like a net with too-big holes. The reborn idealist was faced with the reality that I could only do so much. A warped cliche, I could pull a child out of an institution but I couldn't pull the institution out of the child. My power to change was as transparent as the laughter that spills from Em's lips when we tickle her hard enough or pours forth hysterically as she is falling asleep at night. It was December 26, 2007 again and I had just put down the phone that carried the news of an extra chromosome.

This grief has been different though. This was not grief to be shared with a chubby little baby who stared lovingly into my eyes, reached for my face and cooed at me soothingly. This was not grief overshadowed by the glorious hope that if you do all you can, if you do your best and he does his best, together you can overcome this and prove the world wrong and even if you fail you will go down in joy. This was grief propped up by the cold reality that you had done all you could, that you still failed because of the cruelty of others and you might not be able to overcome this. Ever.

Dawson points to pictures in books and grins at me and asks, "What this?"
Emerson drags herself into the dining room and bangs her head repeatedly onto the floor.

And as I sat in the midst of these conflicting worlds I couldn't help but ask myself - Can I do this? Can I parent this child, knowing she might always be lower-functioning, might be non-verbal, might have autism or some other secondary diagnosis above and beyond my Known? Can I keep casting my inadequate net, even if I might never be able to rescue this child overboard?

The truth is that parenting a child with Down syndrome is not an all-inclusive book title. It is one experience to parent a child with Down syndrome who is only mildy delayed, flush with the possibility of independence and growth and who looks at you with eyes that reach for you and whisper not to be afraid. It is another experience to parent a child with Down syndrome who is like a newborn in many ways, the most important time of brain development trashed by people with supposedly higher IQs, whose eyes twitch and dart, unable to connect, leaving you both as islands adrift, lonely and terrified.

We had a consult with a nutritionist last week. We got the paper report earlier this week and though it was all already known, seeing everything in cold print always hurts so much more. It is hard knowing how underweight she is, how much she NEEDS to eat, and knowing that ultimately it's up to her because I can only try and try and try some more but if she won't take it, then that's that.

On Tuesday I broke down crying during our speech/occupational cotreatment session. And for the first time I seriously - seriously - considered disrupting this adoption. I cried so much that night I was grieving for Dawson all over again. No, let me rephrase that truthfully - grieving for myself all over again. Just the worst parts though, just the selfish and frightened parts that were able to sneakily remain beneath Dawson's blinding glow. But he made the good parts stronger and on Wednesday I woke up knowing I could not give up on her so easily without giving up on the lessons I thought Down syndrome had taught me.

I've decided to back off a bit with the feeding, even if that means she continues to barely gain any weight. I've decided to keep plodding away at picking the lock on the prison her homeland so generously bestowed on her, even if in the end we will only ever see each other through bars. I've decided that until she can find her own hopeful light, we will carry one for her. And mostly I've decided that the sun isn't the only beautiful thing in the sky and that even eclipses have their own special magic - they can blot out the blaze and force you to realize you can still see just fine if you keep your eyes open and never stop looking ahead.

some kind of wonderful

2009-07-20T21:36:00.004-04:00

"I lub ooo."
- Dawson, 19 months old

I have lots of pictures to share of a trip to the zoo and the older three kiddos riding bikes with Grandpa (presents for Parker's upcoming 4th birthday!) and a few other cute ones, coming soon! For now, just a brag on my Dawson. :)

Last Friday while sitting in the backyard watching the older three race around the playset, I perched Dawson up on the patio table in front of me and made faces and sounds with him for a few minutes, followed with a kiss and one of my hundred "I love you"s sent his way each day. He grinned, wrapped his arms around my neck and replied excitedly, "I lub ooo." Um, awwww?

He said it again in response to me the next day but yesterday morning takes first prize. After I rescued him from his crib in the morning, sat him down on the living room floor with some toys and laid down next to him, he stared at me with that all-consuming smile and I smiled back and dropped the three words again. He got very serious looking, cupped his chubby little hands around my chin and said softly, "Lub ooo" and leaned in and gave me a big open-mouthed kiss.

Really, what on earth did I do to deserve this little angel? And I wish I could figure out what it is I keep doing every day to continue to deserve him so I can make sure I never stop doing it, ever. ^_^

Some cute ones of Dawson and Em finally starting to play together. Loving silly faces and the last one where you know Em is thinking, Yeah, I kinda like that kid - don't tell him, okay? :)

baby steps

2009-07-07T22:44:00.008-04:00

We are still moving along in our adjustment period - Emerson has good moments and bad, as do we all! Unfortunately we have all been battling what seems like three different cold viruses for over a week, bouncing around between us; Dawson has gotten the worst of it. Emerson has been receiving therapies for two weeks now and she does great with our therapists. Our days are busy but manageable.

Holden is getting big and is now in vertex (head-down) position so we are feeling and seeing lots of movement. Last week I canceled my next appointment with the local hospital midwives - I have been chewing on the decision since we had our ultrasound confirming all was well and I ultimately knew there was no way I could abide by "rules" with which neither I nor science agree but merely exist to placate their malpractice fears (i.e. not being "allowed" to birth in their birth pools because Cade was a c-section, even though I've had 3 vaginal births since then), especially after having such a wonderful homebirth experience with Dawson. As with him, the sense of freedom is amazing and I am so relieved to be taking full responsibility again and looking forward to another fast but peaceful waterbirth.
* For those that asked/are yet to ask - yes, I am planning another UP/UC (Unassisted Pregnancy/Childbirth). Practical as always, as with Dawson I will be doing my own regular prenatal check-ups just as any provider would do, right down to glucose monitoring around 28 weeks. I also do intermittent fetal monitoring during labor with a waterproof doppler, and will probably need to brush up on my midwifery textbooks before October. As always, if any complications arise requiring assistance at any point I'll happily make an appointment again. But statistically speaking all will likely go well. :)

Feeding continues to be our biggest challenge with Em. We have now progressed from her screaming hysterically for over an hour at the mere sight of a baby spoon or jar of food to her allowing us to "feed" her while keeping her distracted with some toys - she isn't ingesting much as her tongue thrust is so very strong, but we are happy to be beyond those crying fits. I have to say that unless you've adopted a child with major feeding issues, it's hard to grasp exactly how emotionally charged a situation it can be - I know I certainly didn't understand until now.

It is not a matter of personality; she has plenty of that, and though sometimes she dives back into her old world, for the most part she is happy, playful and seems to love her new surroundings - she has a great connection with Cade especially. Feeding though is one of the most basic means of expressing a parent's love and devotion and when you have a child refusing to allow you to help her in that way, it's very upsetting.

She's nearly two years old. She weighs 16 lbs. Her diet is that of a newborn baby. She is not gaining weight, though we try to make her bottles as high-calorie as possible without taxing her body and we have been feeding her 40+ oz per day. She's just not getting what she needs, and though we try to give her that she's not equipped with the skills to accept that because she was never provided with those skills during the golden window of opportunity. I have a lot of feelings on that subject, but as Thumper's father would say, if you can't say something nice... save it for your book. Or something like that. ^_^ I will say I hope things change for those other children - it doesn't take much time to introduce baby foods to a 6 month old, and it can mean all the difference in their future if they get the chance to have one. As it is, every day spent there is not just a day lost, it is a tomorrow lost. And that is the greater tragedy.

She does still scream when we brush her teeth, but again she no longer cries inconsolably for over an hour afterwards - she is easily calmed by hugs and words. She is also now grinding her teeth nearly constantly, perhaps a sign she's seeking more oral motor stimulation. She tolerates massage on the outside but any venture into her mouth results in more screaming.

Still, we struggle on, glad for even the tiniest baby steps, the smallest glimmer of a more normal future for her. Though she won't be enjoying her birthday cake this year, we hope very much that by next year she will be one of the messiest 3 year-olds ever!

graduation

2009-06-27T21:45:00.006-04:00

"When you leave here, don't forget why you came."
- Adlai Stevenson, to college graduates

The blog is long overdue for an update; it has been a very busy and draining couple weeks! The week before last we went up to the Utica area (in the foothills of the Adirondacks) where we lived before moving to Binghamton to attend my beautiful baby sister's high school graduation. We ended up going out to a restaurant with my family and our entire kid circus at 10pm - they were amazingly well-behaved and were quickly asleep on the drive home!

Last week was Cade's preschool graduation, the last day of school and the beginning of what is going to be a very busy summer for me - Emerson has now started receiving therapy services so between her and Dawson, Macy's two speech therapy sessions each week and Cade's three speech therapy sessions and two occupational therapy sessions, we will have 17 visits from various therapists throughout the week. Yes, 17. Although it can be overwhelming to think about, I try to temper my stress level by reminding myself how lucky we are to live in a place where such an existence is even possible - and completely free of cost to us, other than what we put into taxes.

The last week or so has been particularly emotional for me. Dawson is having little explosions in his development - taking steps on his own when we hold his hands or support his hips, giving high-fives, saying more words than I realized he could hold in that little head of his (bubbles - pop!, Elmo, hand, hair, glasses, sock, hat, to name a few) and is now completely done with bottles and only drinking from straws or open cups. His progress stands in stark comparison to Emerson, still having trouble connecting with others - though she has improved since we first met, many times she still looks around us or through us, not AT us. She laughs or smiles when we tickle or play with her, but it is a lonely kind of laughter, a self-smile. We've been making plans to celebrate both Parker's and Emerson's birthdays and the reality of where Emerson is right now as she nears the big 2 has been heavy on my heart.

Part of me recoils at the thought of celebrating her birthday at all - she is still refusing any form of baby food, so there will be no pictures of her happily munching on birthday cake; she has little interest in toys other than rattle-type objects, so there will be no excitement in unwrapping the latest noisy, light-up gadget from the toy store. It is not like celebrating a 2nd birthday. It is not like celebrating a 1st birthday. It is like a grand mix-up on the calendar has resulted in the celebration of reaching the 5th month.

The reality that she has for all practical purposes lost the first two years of her life is harder to face removed from the abstract. Especially since I don't think she lost that time; rather, it was stolen from her. I cannot help but feel guilty, not as a parent because I know we did all we could to get her here as soon as possible, but guilty as a human being. Guilty for thinking simply removing a child from such a situation would be enough to make a difference, enough to mean something. Because the truth is that it's not enough.

I have not spoken much about my deepest thoughts during our stay in Serbia. I have not mentioned a sweet little boy I saw many times during our visits with Emerson, a sweet little boy I babbled with a few times and held just once. I still think of him often. He is a bit older than Emerson, he has fair hair and the biggest knowing eyes like Dawson's, for some reason at first I thought his name was Nika and though it isn't, that is what I will call him because Nika means "unconquerable" and that is what I hope he will be - an Unknown Hero. He is not available for adoption because his parents will not allow him to be. They don't want him, but they want no one else to have him either. I have had a few bad dreams over the last few weeks, some where the officials in Serbia wouldn't allow us to leave with Emerson for strange and silly reasons, like it was raining. Others just of that little boy, banging his head on the crib bars as Emerson sometimes does against the wall, babies' cries going unanswered around us, children left sitting in strollers for hours at a time. Last night I dreamt Emerson was falling and though I tried I could not reach her; I woke up gasping and clawing the air.

Cade's preschool class included one darling little boy with Down syndrome. I had spent the entire school year fighting back the urge to pick him up and hug and kiss him whenever I saw him. I saw Dawson in him, the same special magic leaping from his almond eyes. At Cade's graduation ceremony, when it was that little boy's turn to walk across the stage and stand on the little wooden "Bridge to Kindergarten" with his diploma, the applause of the families of 88 other students thundered passionately like it hadn't for anyone else. Many people stood and shouted out. Two more little ones with other special needs crossed the bridge and met the same enthusiasm.

And I sat there holding Emerson, near tears for a few minutes, wondering what in the world could make so many of us Americans see something that so many others just can't see. What is it about us? Do we learn it at some point in school? - some quiet appreciation for the underdog, for the one who must overcome the most and work the hardest. Perhaps it is part of our history, because we have made and continue to clean the stubborn stain of oppression and are careful not to spill anymore. Maybe it is because although we stray from the path of freedom, in our hearts we all believe in the ideals that formed our nation and we know that the "weakest" among us are truly the strongest because only they have the power to remind us when we forget. Not all Americans feel this way, but I have to say I think the majority do and most of those who don't are well-equipped to change.

And as Emerson continues to balance precariously between the disconnected world she has made for herself and the one we are trying to draw her into, as I learn for the first time to love without knowing if it will ever be fully returned, I know still I want that applause for her. For Dawson. For Nika. For all of the brave little ones with their "disabilities," a term only made so by the most disabling human trait of all - injustice.

The above quote is meant for graduates, but I can't help think it's meant for me, as well. There was a reason for all this, all the struggles, a reason I sat across the ocean in a stuffy little room feeding a bottle to a 21 month old abandoned child and staring out the window at a temple still being toiled on to honor a God, a God who would find the greatest dishonor in the children lying in cribs down the hall.

My book is at my fingertips, struggling to get out, hoping to mean something, to change something. Now if I can just find some time around those 17 therapy sessions each week... ^_^

Thou shalt not be a victim. Thou shalt not be a perpetrator.
Above all, thou shalt not be a bystander.

Holocaust Museum, Washington, DC

And now, before this post gets any more serious, some pictures. :)

evaluation day

2009-06-15T21:51:00.002-04:00

Emerson had her Early Intervention eval today - we chose the same clinic as we did with Dawson (and Macy for her speech issues) so we are all like old friends now and we sat joking about our house o' therapy and how TLC should offer us a reality show so we can replace Jon & Kate LOL.

At the beginning I gave my guess that she would measure around 5-6 months of age in all areas - and I was right! It feels a bit strange knowing that although Em is 4 months older than Dawson, he is about 10 months older than her in development. It is amazing to think what a difference a loving family environment and EARLY intervention can make for a child with DS. The only area she scored at an age-appropriate level was Social-Emotional, coming in at low-average - and I know that wouldn't have been true one month ago. :) Speech was her weakest area... her receptive skills are basically like that of a newborn... such new territory to us. Dawson was too tired to impress the therapist with his new skills of saying "up" and "down" and "right there" when you ask him where something is in a book - instead he fell asleep on the floor next to her LOL!

Em did a great job during the 1 1/2 hour evaluation, tolerating being passed around between 3 therapists and the psychologist without fussing once. I think by the end of the day though she was very over-stimulated and tired because when we started our bedtime routine at 6:30 she started crying - refused a bottle, wasn't happy being held or lying down - and kept crying until after 8pm until she started dozing off amidst tears on my shoulder. Poor baby :( Sometimes she does start screaming for unknown reasons when she gets her bottle... we are not sure if it's just sensory overload since she has such oral sensory issues, or if she has some tooth decay down into the root that is causing her pain. I don't think her teeth were ever brushed, or at least not well, based on how they look, so it's possible. I know the orphanage staff must have been very short on time, but it's a shame to neglect something so important. She'll be seeing our pediatric dentist in a couple weeks, then has an appointment with the opthamologist and then she and Dawson will be going to the audiologist for hearing screenings.

Hoping she gets a good night's sleep tonight and is back to her happy self tomorrow morning!

as promised

2009-06-13T23:44:00.003-04:00

disbelief

2009-06-12T16:04:00.002-04:00

After an incredibly stressful and busy week taking care of one sick little boy (my poor Dawson - his very first ear infections) today was finally the long-awaited appointment with the pediatric cardiology team in Syracuse.

Matt and I decided to divide forces to make it easier on everyone - I took Emerson and Cade (who was very fascinated with the idea of seeing pictures of his little sister's heart LOL) and Matt headed to the huge shopping mall with the other three.

Em had an EKG, an echocardiogram and a visit with one of the very sweet cardiologists. When all was said and done, I sat there staring at him unblinking for a few minutes, trying to decide whether I most felt like crying or laughing, before shaking his hand and heading to the check-out desk to make the next appointment for her...

It was not an appointment for a heart catheterization, as I expected would be the next step. It was not even really a follow-up appointment. It was simply a customary measure to check on her growth.

Because Em doesn't have a complete AV canal anymore.

She has an intermediate (also called transitionary) AV canal. In laymen's terms, a complete AV canal is a hole between the upper chambers and a hole between the lower chambers. Em has a standard sized hole between the upper chambers, and a very tiny hole between the lower chambers.

She doesn't need surgery right now. It's typically done between ages 3 and 5 for this sort of defect.

She doesn't have any pulmonary hypertension at all.

Her oxygen saturation was 100%.

Her blood flow was good, her blood pressure was great, she had only a tiny insignificant amount of leakage from the valve. The cardiologist said her heart looks great.

He ordered her off all medications immediately - she just doesn't need them.

Can you imagine my jaw on the floor?

:)

I am still puzzling over how all this came to be. Who got what wrong, and why. How her oxygen went from 87% two weeks ago to 100% today. How we spent the last year worrying, agonizing, planning.

Disbelief. Miracles. Amazing. ^_^

I promise - a montage to come this weekend! :)

chaos, joy

2009-06-06T16:00:00.000-04:00

Dawson and Emerson are down for a nap and Matt has the older three outside playing and I am stealing a few minutes to upload some pictures and maybe even post a few LOL! ^_^

Matt went right back to work Wednesday and Grandma and Grandpa went home and we've spent the last few days in survival mode as we try to adjust to having another baby to take care of!

Em is doing great - she is so happy, it almost feels like she is a different child than the one we met in Belgrade! We were worried she might be overwhelmed by all the kids hovering, hugging, kissing, playing - but she seems to love having them around. She is babbling a ton now, so much so that I have to rock Dawson to sleep in the other room or she'll keep him awake while she is lying in the crib LOL. She makes happy noises when she sees us in the morning, lets us hug and kiss her and has started snuggling into our chest when we pick her up, and smiles and giggles so freely now. Macy adores her and will sit for ages tickling her while Em laughs deep belly laughs we've never heard before. Her appetite is huge, she's taking over 30 oz a day of formula/pediasure and we're hoping to start introducing some baby food consistently now that she's adjusted to her bottles. She doesn't scratch her face anymore, she doesn't bang her head into the floor/crib/any solid surface she can reach anymore LOL. She just seems...happy. :)

The last few days have been stressful and overwhelming at times, but seeing the changes in her makes it all feel so worthwhile.

She was 15 lbs, 15 oz at the pedi visit on Wednesday (Dawson was about 24 lbs! - he is a monster next to her!) and her cardiology appointment is on Friday. We also managed to squeeze in a prenatal visit for me and our big ultrasound. And we are very happy to announce we are having a healthy baby....
BOY! :)
The kids are all excited to be having one more baby brother, Matt is thrilled he gets to use his long-awaited boy name, Holden, and I am thinking I probably should have been a queen born a few centuries ago LOL!

I am hoping to create a montage of our adoption journey this weekend including many more photos of the kiddos together, but for now here are a few. :)

home at last

2009-06-03T07:09:00.002-04:00

Just a quick post to say we are home!!! We got in last night about 7:30 and we were all up until 10:30. Em was absolutely amazing on the flights - even the 9 hour transatlantic where she could only nap for 30 minutes because of a screaming toddler in the row next to us LOL. She was exhausted toward the end (as were we!) but still was happy to play on the floor and watch her brothers and sister with much curiosity while they smothered her with kisses and hugs.

Hopefully I'll take lots of pictures today and will have more to say tonight. :)

have visa, will travel

2009-06-01T12:27:00.001-04:00

After our very long, very busy day including 3 hours and 15 minutes of nail-biting in the U.S. Embassy and a 10 minute dash to get new pictures of Emerson because she was too pale in the ones we brought - we have the infamous brown envelope of immigration visa paperwork!!!

We weren't sure how things were going to go at the Embassy because when we finally got called in for our appointment, we realized we were meeting with the grumpy Serbian guy who gave us a hard time the first time we were there. You know, the one who insisted "there are no orphans in Serbia" LOL. Matt and I were both silent as he read very, very slowly through every scrap of paper we gave him. I didn't even dare mention that we were scheduled to go home tomorrow morning and would really appreciate if we could get the visa the same day... of course that was partly because they had tons of signs with huge lettering all over the Embassy that proclaimed IT TAKES 1 BUSINESS DAY FOR VISAS - DO NOT ASK US IF IT CAN BE READY THE SAME DAY!!!

Well after tons of waiting and dashing out for new pictures when they asked for them, we finally went in and did the swearing to everything, the Consulate seemed a bit shocked we were adopting this kid with DS and said, "I could never handle a handicapped child." Geesh. At this point we still had no idea if they were going to give us the visa immediately or not and when she finally asked when we're leaving and I said tomorrow, she said "Hmm...cutting it close."

We went out and waited some more (and bit some more nails LOL) and finally they called us again and there was the envelope, all ready to go!! Longest 3+ hours of my life, but Emerson was an absolute angel the entire time - she sat upright on Matt's lap happily playing with her little toys, only fussed a few times and was easily calmed. :)

And best of all - our family will be back together in just over 24 hours!!!

Next post from me will be tomorrow night from Binghamton! :)

all clear!

2009-05-31T08:32:00.000-04:00

Our facilitator worked very hard to get the information sent off to Austrian Airlines and we just got an email from them - Em has the all clear from the flight doctor! Hoping for no complications with the Embassy tomorrow and we are on our way home on Tuesday! :)

43 hours to go

2009-05-31T07:39:00.001-04:00

It seems like ages ago I was counting down to our flight here. Now we are counting down to our flight home!

We are slowly but surely making progress with Emerson - we have finally found a few baby food/cereal combinations she likes (and several others she doesn't LOL) and she is a much more tolerant, pleasant child when she has a tummy full of food she approves of LOL! Hmm... sounds like 4 other little kids I know. ^_^ She is napping better, sleeping well at night and paying more attention to us, making eye contact and occasionally giving us a few smiles and coos. I know it's going to get so much easier and better once we are in our own house again.

It has been quite a stressful couple days for us; we have been having problems with Austrian Airlines - which we will be taking for the first 2 legs of our journey home - because after asking them about prescription requirements for carrying on medication they eventually started demanding medical clearance for Emerson. Our facilitator helped with submitting the form they wanted, but it was not good enough for them. There has been concern over her oxygen saturation levels - the one and only time they were tested here they were 78% - and of course all the airline thinks about is their liability. There have been many moments we have wondered how we are going to get this child home.

Well hopefully today we are close to resolving this. An amazing favor from a doctor friend of J, we took Em in today to have her blood gases measured (peripheral, not arterial) - up a full 10% to 87%, not bad at all for a little girl with a big hole in her heart! All the other parameters were within normal range, too and none of the doctors here are concerned with her flying. We are relieved and hoping with this new information sent to the airline, they will be satisfied and let us on the plane LOL!

Tomorrow morning we will take her for her medical exam and then in the afternoon we have her visa interview. We have one more day where we need everything to fall into place.

We can't wait to get home!!

passport: check!

2009-05-29T12:15:00.003-04:00

Although the new Serbian passport process is supposed to take around 48 hours, as of this afternoon our facilitator has Emerson's passport in her hands!! :)

Finally, something happens sooner than expected for us, instead of later LOL. This means we don't have to worry about picking up the passport Monday morning and then hoping we have time to rush to a medical exam. Her exam is scheduled for 9 am on Monday and her Visa interview is at 2 pm. Barring some awful complication, we should be able to wait for Emerson's visa and pick it up right away - and we will be on our way Tuesday morning.

Today has been trying for us all. We took a short walk up to a photo shop to get a picture of Em for her visa, and she has no tolerance for anything like that - the instant we shifted her toward the camera and held her out a bit she started screaming. After about 10 minutes we finally got one picture where she was looking up with her eyes open, though it wasn't looking quite directly at the camera. The whole time the young woman taking the pictures was rolling her eyes and sighing - not mother material I guess LOL!

We're nervous about her not looking directly at the camera and about the size of her head and its proximity to the top edge of the picture. We called the Embassy afterwards and asked them and they didn't really give us a straight answer - just that it has to be 5x5cm and there has to be enough room around the head for them to scan it in. We are thinking we might take her to another photo place tomorrow, we found one just one block from our apartment on the way back (go figure!) - we cannot afford for the picture not to be good enough.

She did not eat very well again today, even when we tried giving her a bottle of mixed baby food/formula with the wider nipple hole. She gets tired so easily and was just generally unhappy and fussy. I am guessing she will need oxygen at least at night. She seems to have a few teeth coming in too so maybe that is part of it, we can only hope once we get her home and start taking care of her heart and all of those physical needs that she begins to brighten up.

adjustments

2009-05-28T15:45:00.001-04:00

Today was our first full day with Em - phew!

She did great last night - drank 2 formula/pediasure bottles eagerly, took her heart medication without too much fuss, took a bath without crying at all and fell asleep relatively easily once we got her comfortable. She slept rather crazily - moving all over the place, flopping here and there, waking up coughing a few times - until about 3am when her coughing settled down and she seemed to be sleeping more deeply.

This morning we went for her passport appointment at the police station, where we had to lift her up into the range of the camera (while carefully staying out of the shot) and try to get her to look up (without crying, as she was doing most of the morning) for a good enough picture. Finally they were satisfied and her passport may be ready tomorrow afternoon, or Monday morning at the latest. We are hoping for tomorrow because Monday is going to be chaotic enough with her physical exam and visa interview.

It was a rather overwhelming day for all of us, as we basically know nothing about one another - it is like having a newborn all over again LOL! For some reason she is miserable being upright - supported sitting, leaning against us on our laps, even being held over our shoulder unless we are walking her around - and only tolerates it for a bit before she starts whining, crying and arching toward the floor. As soon as we got her back to the apartment and laid her down with her toys she was happy again. It's very strange and we're not sure if it's just a sensory thing - she's used to lying down most of the time, a sick thing - she still has a cold and probably isn't feeling too well, or a heart defect thing - she seems to get tired very easily.

It will make all of our appointments on Monday that much more difficult though and we are a bit...um... terrified of the 9 hour transatlantic flight LOL! Austrian Airlines is arranging special seats with a bassinet for her so she will at least be able to lie down to rest.

Feeding did not go so well today - she usually loves her formula/pediasure bottles but sometimes she will drink for a few seconds happily and then suddenly turn away and start crying. We don't know why. We took one of our bottles, enlarged the hole and made a similar food-and-milk concoction she got at the orphanage, and she drank so fast she lost at least 1/3 of it. Gave her a formula/pediasure bottle before bed and again, first crying and turning away, then tried again 15 minutes later and she drank the entire thing and cried when it was gone. It's baffling.

Sometimes she will be playing happily with us with a toy, and will suddenly just start crying. It's hard not knowing what's wrong, what she's feeling or thinking - maybe this is just her way of saying hey, where am I? what happened to my usual routine? It takes a lot of effort not to get overwhelmed though, especially since I am missing the other kids and worried about being away from them these extra few days.

Four more nights after this one. They can't pass quickly enough.

no small miracle

2009-05-27T11:03:00.001-04:00

In this life we cannot do great things.
We can only do small things with great love.
- Mother Teresa

At about the same time the sun was rising back home in New York, we welcomed a new daughter into our family.

Andjela Schafer (soon-to-be Emerson Andjeline Schafer, once we do the readoption process at home), is officially ours! :)

It was a very busy and exhausting day, much paperwork at the Social Work Center followed by a dash across town to get her brand new birth certificates and ending with a long wait in the police station to change her last name in preparation for our passport appointment tomorrow morning. We then headed to the orphanage one last time, had chocolates and Turkish coffee (which I love LOL) with J and some of the staff, dressed our still-sick little sweetie in a pretty pink dress and headed back to the apartment. She is perfectly at ease and curious about her new surroundings and hopefully she gets over the cold she has very soon. We are relaxing and waiting for our next busy day to begin - one we finally get to face together.

It has been a very long and difficult journey filled with many hurdles and many moments of doubt and uncertainty. One year and one day.

All worth it. :)

tuesday it is

2009-05-26T13:16:00.001-04:00

After emailing with our facilitator, we are going ahead and changing our plans so that we come home next Tuesday. Of course it's not what we were hoping, but it's just 3 days more and still a better outcome than it might have been if we didn't have people here fighting for us.

Good news is our apartment is available for the extra nights and there were only 3 seats left on flights on Tuesday and our travel agent nabbed 2 of them. We also got a very kind email from someone at Austrian Airlines and she is arranging special "bulkhead" seats for us with a bassinet for Emerson since she doesn't like being upright for very long.

I'm emotionally drained right now but hopeful that the rest of this process will go more smoothly and we will soon be back home adjusting to life as a family of 7!

day fourteen

2009-05-26T08:06:00.004-04:00

After our facilitator and lawyer pushing very hard on our behalf, we are happy to say we are still going to be adding one more citizen to the U.S.

For a little while we thought we were going to do the ceremony this afternoon - which completely surprised us - but though that didn't happen, we WILL be doing the ceremony tomorrow at 11 am!

We are very unsure right now if we have any chance at all of still going home on Saturday because the Serbian passport process takes 2 days and the American visa process takes 1 day, so Matt just headed down to a payphone to call the Embassy and see if we can schedule the visa interview for this Friday afternoon optimistically, if it is not too much trouble to change it to next Monday if we find it's impossible to finish the passport in time. We would then be coming home on Tuesday. Still a stress for us, because it will cost us so much more to stay longer and any days Matt takes off work next week will be totally unpaid, not to mention the extra days Grandma and Grandpa will have to devote and the fact that I just want to get home to my kids.

But we will just be grateful we get to bring Emerson home at all and dare to hope just a little that we will still be going home on Saturday.

Emerson is still sick with something, fever of about 101 this morning and a dry hacking cough, and we just found out we need a special form filled out by one of her doctors to even be allowed to take her on the flight because of the heart condition and medication we will be bringing with us. We can only hope she is healthy enough to pass her physical exam and we do not have trouble getting this paper signed.

We deeply appreciate all of the support that has been sent our way.

an invisible red thread (part II)

2009-05-25T16:10:00.006-04:00

connects those who are destined to meet,
regardless of time, place, or circumstance.
The thread may stretch or tangle, but it will never break.
- An ancient Chinese belief

In two hours it will be May 26. It will have been one year since we made the committment to adopt Andjela. I thought we might have our ceremony tomorrow. I thought it would be sweetly ironic, straight out of that novel I keep meaning to write.

The Minister signed the paper today.

Andjela's Social Work Center is not "ready." They cannot do the ceremony until Wednesday or Thursday.

I don't think we've been very impatient. I think anyone who waits one year for a child they have never met surely could not be impatient.

I never thought I would be in Belgrade, walking up Kralja Milana and wiping tears discreetly from my cheeks, life busy going on around me. On the way back from the rather depressing ballet we saw tonight, we stopped for ice cream. The woman couldn't understand we wanted two cones - one lemon, one chocolate - and when she handed us one cone with one scoop of each, we grabbed a paper cup and spoon and meant to make do with what we were given. Well the top scoop missed the cup and landed on the sidewalk and I promptly saw the symbolism of this entire adoption and started crying in earnest. At least it was dark.

However much we are willing to stay longer, we must leave by next Tuesday. We will, without exaggeration, not be able to afford anything further. Any day Matt misses from work next week will be unpaid and may put his job on the line. Matt's parents cannot stay any longer than that - they have been amazing to take so much time out of work and life to be there for the kids, and they must get back to those things. We have 4 children at home and 1 on the way and we must think of them, too.

We are going home by next Tuesday, even if that is alone. If we cannot complete the adoption on Wednesday, we are going home this Saturday as planned.

Reflecting on that proverb above, I realize for the first time that it does not say we win in the end. It says we were meant to meet. And we did. And maybe adopting Andjela was not what was meant to be from this journey. Maybe it is something I will never understand.

No comments on this one. These words are only a shadow of a pain they can't express and I'd rather let them echo in the silence.

day thirteen...still waiting

2009-05-25T08:57:00.002-04:00

It's Monday, it's 3 pm here, still waiting for the Minister's signature.

We got to tour the rest of the orphanage today; it was very sad, what else can I say? I'll never understand how a mother can turn over her child to such places. Ever.

Emerson's over the chicken pox, the spots are completely healed. Now she's sick with something else - slight fever of about 100 this morning, lots of congestion in her nose and a dry cough. *sigh* Her ears don't seem to bother her, but we really just don't know what she has now. I want to get her into the audiologist as soon as we get back as we are concerned with hearing loss - it might just be environmental but she does not respond to sounds as she should. Dawson is due for a routine follow-up anyways so hopefully we can take them together soon.

A couple pictures from today. I have a few videos of her too but the internet is so slow here it takes an hour to upload even 30 seconds, so those will have to wait until we get home...whenever that may be.

two palaces, a piano & a pizza place

2009-05-24T15:59:00.006-04:00

Despite the fact that we did not visit with Emerson today (which feels strange - I miss her face), we were very busy and did just as much walking - a new blister on my toe to prove it.

This morning we went to a concert given by 4 pianists; it was very lovely but I couldn't help wishing my ears were more schooled in such things - and couldn't help wishing I understood enough Serbian to laugh at the jokes made by the woman I assumed was the producer of the event at the end. :)

Then J took us to meet with the Desmarais family, the Canadians adopting an adorable little boy on Reece's Rainbow, to head for the Royal Compound tour. We had a few nervous laughs when we realized some of us weren't up to the "dress code" given for visitors of the Compound - no, no miniskirts or tube tops LOL, just good twill shorts like most of us North American yuppies live in for the summer. I was making dramatic plans to sit out with them in peaceful protest of the policy but it turned out to be a nonissue and we all got to spend the next 2+ hours seeing many beautiful things in many tiny rooms with many, many other people.

Did I mention I have a touch of claustrophobia? ^_^

Everything really was amazing but my favorite part was the home theatre in the stuffy basement. Imagine this brightly colorful room decorated with the arches and swirled paint of some Sultan's dream, throw in a huge projection screen on one wall and a few remote controls and the latest new releases from the video store sitting carelessly on the table between armchairs once occupied by the leaders of each district of Yugoslavia. It was so... human. I wonder if they've seen the bootlegged copy of Angels & Demons? :)

On the bus ride there and back we got our first up-close look at the skeleton buildings remaining from the NATO bombing in the 90's. We wondered if Biden drove by these buildings, and if he did if he felt even the slightest desire to jump out of his limo and start rebuilding them. I wonder if most Americans even remember those bombings, and how they would feel watching them limp across a bus window.

Serbia is a very strange country, strangely amazing that a people could come through so much struggle still somehow as one, still struggling to be more one than we could really understand. Maybe if we did we'd understand why they hope to keep it that way. ^_^

But enough philosophical meanderings - we were very kindly treated to a delicious dinner in the Bohemian Quarter by our new North American friends, had the sweet creamy ice cream in the Pedestrian Zone we've been meaning to for a week, and scoped out the Pizza Hut everyone keeps raving about - we have plans to celebrate (or cry) over a few pies, breadsticks and beers (nonalcoholic for me, of course) tomorrow night after we finally get (or don't get) the allusive Minister's signatures!

We can't wait to go home, but we are happy to be in such good company while we're here! :)

A few pictures from the Palace site:

day eleven

2009-05-23T11:54:00.002-04:00

Although the strap on my very favorite purse (and the only one I have here!) broke on the way home from the orphanage, overall it was a much better morning - I think Emerson is finally over the chicken pox as she had no fever at all, her skin would be clear if she stopped reopening the tiny scabs with her sharp little fingernails LOL, and she was so happy and energetic until her usual meltdown time around 11 am when she was ready for a nap.

We've been talking with a few families who have come before and we feel pretty sure we can get her visa the same day we do the exam/interview so I feel more confident that as long as we complete the ceremony on Tuesday we will still be able to go home next Saturday - I'm cautious but more optimistic.

And although (as luck would have it) Matt's manager is out of the office next week, he was able to get ahold of her boss and she is taking care of his FMLA - so no missing paycheck!

Tomorrow we are going to take a tour of the Royal Palaces, one of the things I most wanted to see here, and Monday night we are going to a concert of choir music - hopefully our last night without a child to keep us happily busy! :)

day ten

2009-05-22T13:54:00.003-04:00

Finally, Emerson seems to be getting better. This morning her fever was down to a slight 99.5 F, her spots are only the tiniest scabs now and some on her legs were gone completely, and she seemed much happier and more energetic. Maybe tomorrow or Sunday her fever will go away entirely and by Monday I think her skin will be clear.

No signature from the Minister today, so we have to hope for Monday. If we do not do the ceremony until Tuesday, we will be really crunched for time to finish the passport and visa but we are hoping we will still be able to. Tomorrow will be only one week until we are supposed to go home - I have looked forward to tomorrow since we arrived here, but it is hard to be as excited as I thought I would be when we really don't know if we'll actually get to leave next Saturday as planned.

We have not been going out sightseeing as much as we would like but it has been so hot here and we are trying to restrict our spending as much as possible in case we must make our money stretch another 4 days, it is better to stay in.

I miss my sweeties so much. Tonight I have been planning birthday parties - Parker's and Emerson's - and that has lifted my mood a little. Nothing cheers me up like dreaming of birthday cakes. ^_^

day nine

2009-05-21T10:44:00.004-04:00

Em is still sick; her fever was about 101 F this morning. I think she must still be feeling very yucky too or maybe getting an ear infection or something as the last couple days she hates sitting up or being upright at all (even being held) - she starts screaming like she's in pain, and only calms down once she's lying down. When we came for our afternoon visit today she was still napping. We waited for about 45 minutes but she was still asleep so we walked the mile back to the apartment.

Good news is all of the paperwork that must be done before the Minister can sign off on our adoption is done. Bad news is we are not sure when he's going to sign. He has been busy because of Biden's visit (I can't get over our luck - first time since Carter I think that such a high-level U.S. official has come to Belgrade, and it had to happen while we're here doing an adoption) so it will probably not be until Monday - at the earliest. Then we have to have the official ceremony. And only then can we start getting her passport and her immigrant visa. We are pretty concerned over still being able to come home on the 30th. If we don't do the ceremony by the end of the day Monday, I think it is unlikely we will get everything done in time. If we have to stay longer, it will have to be at least another 3 to 4 nights just to get to the next business days to continue doing the passport and visa stuff, meaning over $500 more in expenses for us. To top it all off, Matt's FMLA leave still has not been approved, waiting for some paperwork from his manager, and if it's not done by next Tuesday he likely won't get his next paycheck until it gets straightened out. Everything is always out of our hands.

Matt's more optimistic than I am, but really I think I used up all my optimism for this process many months ago. Right now I'm just drained. I miss my kids, I'm worried about Emerson, now I'm worried about spending even more to stay here even longer. And I just want one thing to go our way, just this once.

days six and seven

2009-05-19T12:29:00.004-04:00

Yesterday we walked down to the US Embassy to pick up the paperwork we will need to complete to apply for Em's immigrant visa. The families that have gone before have had pretty easy experiences, but of course we shouldn't have expected that for us LOL!

We waited an hour with a room full of locals, no American to be seen, when we were finally shuffled into a little room with two chairs. Across the glass was a Serbian gentleman who seemed to understand what we were asking but then left and said to wait for someone else. Ten minutes later another Serbian man came in and he spent the next fifteen minutes confusing and upsetting us - asking us if we knew for sure that Em is a "real orphan" because "Serbia has no orphans." Um, okay. We said yes, we had a lawyer and had met with the Ministry officials and all legal necessities were being taken care of - he said that didn't mean anything and our lawyer wouldn't know anything. We asked him what proof he wanted of this and he said none, we just had to know LOL. Later he changed his story and said yes, they needed documented proof. Clearly he didn't know anything about American immigration law or Serbian adoption law! Finally I gave up arguing with him and just said give us the papers and we'll check on everything. It was by far the worst experience we have had in Belgrade - at our own embassy!

Em is still sick, this morning her fever was high again and they gave her some medicine, something like Tylenol I think. I am a bit concerned by how long her fever has lasted - usually with chicken pox it is gone within 2-5 days. Today she had some congestion in her chest too so I am trying not to think about worst-case scenarios like varicella pneumonia. Surely at some point our journey has to get smoother. Right?

She is very comfortable with us, but when she is running a fever she gets very tired and fussy. We can't wait til she's feeling better! :)

This is Em's upset face - of course it's adorable LOL!

This was the shocking "small" portion of a grilled meat patty at a wonderful restaurant near the orphanage - that is a regular large dinner plate it's on. Yikes!

day five

2009-05-17T17:28:00.005-04:00

Once again we only visited with Emerson this morning. She was still running a fever, though not as high as yesterday, and the blisters look like they're reaching their peak. She was still a bit tired and not happy sitting up, only wanting to play lying down. But she was so happy this morning, giggling and smiling and babbling more. She smiled for the first time freely - without us having to tickle her or work for it in anyway. She just smiled. :)

She is still taking her bottle upright very well, spilling less and less each day. And we are slowly trying to get her used to the toothbrush we brought for her but she is not happy when we do that. She is playing with it in one of the pictures LOL.

Tonight we went with J to see some beautiful churches, they have the most lovely paintings inside and even when they were not able to finish them they are still so beautiful. I tried a delicious apple and walnut dessert and Turkish coffee, which I was surprised to like so much. ^_^

Another adopting family, from Canada, arrived today so it will be nice to have some more company! Tomorrow we go to the US Embassy to pick up the paperwork we will need for Em's visa - time is passing slowly but surely!

day four

2009-05-16T13:36:00.006-04:00

We spent just a little time this morning with Em - she was running a reasonably high fever and her blisters are starting to erupt so she seemed very tired and just wanted to lie down to play. Hopefully she is feeling better soon!

We spent the afternoon with J on a wonderful walking tour of one part of Belgrade, where the pedestrian zone is and Kalemegdan Park and Fortress. It was hot today but there was a nice breeze and I didn't realize I was getting a sunburn until we got home LOL! Afterwards we ate at a cafe - we had Mexican food and Italian desserts LOL!The Mexican was not as good as American Mexican food, but the Serbian food we've had so far is so delicious, we will have to stick with that! The desserts were heavenly though!

It is so very beautiful, I wish we were closer so we could see it everyday. It is nice being so close to the orphanage, but we feel tucked away in the city, far from the most wonderful things that made Belgrade, well, Belgrade. :) The buildings are all so amazing, it is hard to imagine any soldier flying over willing to drop bombs on such beautiful history. Some buildings are sadly covered with grafitti writing at the base, so I guess it is not always enemies that forget their respect!

I will have to make a slideshow of all of our sightseeing when we get home, but I had to post a few of my favorites. The first picture is of St. Sava's Temple, it is so big you can hardly imagine - it was huge from the airplane when we were descending and it is only 2 blocks from our apartment and it guides us when we are out walking. :)

spots, feet and a wallet

2009-05-15T11:32:00.004-04:00

Sometimes it's hard not to be overwhelmed by how bumpy this road has been for us - we often have to choose between crying or laughing! :) Sometimes I feel like Sisyphus - you know, the Greek guy forever forced to push a heavy rock up a hill, at which point it rolls back down and he must do it all over again.

So many times we wondered if this adoption would happen - even times we wondered if it was the best decision to continue - but now being here, seeing all the children, we realize what a little thing this is we are doing, but how right we were to not give up, even when giving up seemed like the more practical decision. The right thing isn't always the easy thing, even if it means spending forever pushing a rock up a hill. :) We saw so many beautiful children yesterday, I was very good holding onto my emotions but we both know why all the families who have gone before want to come back.

Last night we went for a "little" walk more into central Belgrade with J - oh my these people know how to walk! Our feet have been getting more and more sore each day and eventually we had to abandon our walk and head home, where the veins in the front of my ankles looked dark and swollen and I wondered if I could walk across the apartment LOL! This morning they were better but after the 4 miles of back-and-forth walks for our visits, the backs of my calves hurt and I have a few blisters on my toes. Hopefully next week our poor feet and legs will get used to such hard work and we'll be able to do more walking to see the sights!

This morning we couldn't find my wallet - ugh! We dug through every bag we had, then started wondering if it fell out of the pocket of our backpack yesterday (or some expert pickpocket helped it out!). More bad luck. I called our bank right away, a $20 call since Skype wasn't working for some reason.

Emerson has chicken pox. Usually not such a big deal, but after talking to my sister and having her ask my mom, we're not sure if I had it as a child. I did have an illness with fever and a blistery rash, but it was never confirmed to be chicken pox. Being exposed when less than 20 weeks pregnant can be dangerous to the baby - more bad luck. The incubation period is 10-21 days so we might not know for weeks if I've caught it. The chances of baby being effected are less than 2% but still - I want to throw up my hands and say ENOUGH ALREADY! GIVE US A BREAK! LOL

A little good luck - our facilitator helped us find my wallet hidden away in the backpack of donated books we brought this morning. :)

I miss the kids so much, I can't describe it. The days are easier since we're busy and excited to see Em, but the nights are hard. It feels like my heart has split between two continents. The thought of another 2 weeks without them is agony and we can only hope and hope we will complete everything and be able to come home on the 30th as planned.

And yet, no regrets. Emerson was so sweet today, she seemed to recognize us when we first saw her this morning and she just seems so much more alive than that first day. We spent some time outside today; it felt more like we all belonged. Giving her back gets harder each time, I can't wait til she's ours forever. :)

Enough words. Pictures!!

more pictures

2009-05-14T16:10:00.002-04:00

(LONG update of our adventures so far is in the post below!)

comedy of errors

2009-05-14T15:27:00.004-04:00

As seems to be the theme with this adoption, nothing went smoothly at first!

Our flights were good, except for the strange and irritating fact that our travel agent did not select our seats for our flights from DC to Frankfurt and Frankfurt to Belgrade. So on both we ended up sitting far apart and unable to change seats with other passengers because they were couples or parent/child.

We got to the apartment fine, but about 10 minutes after the manager left we realized the internet was not working. About 10 minutes and a frantic search through all the suitcases later we realized we had left the 2 electric power adapters (which were one of the first things we bought, last summer!!) in a bag we decided not to use, back at home. We sent off an email to the manager about the internet through my cell phone and then it informed us it was out of battery power. We left the laptop on but (so we thought) in sleep mode in case the manager needed to come in and check the internet. We then left to meet our facilitator, J, for dinner.

Although I was able to read the Cyrillic street signs for the most part and find them on the map, we still ended up going the wrong direction and getting utterly lost. After a taxi and a quick visit to an internet cafe to make our brief post, we had a delicious dinner with many leftovers. :)

We got back to the apartment tired and missing being able to talk with the kids on Skype and realized the laptop was now out of power, too. So even when the internet came on, we would be unable to use it.

We were up early, about 6 am, so we had plenty of time to get to our 11 am meeting with the Ministry officials. Right? LOL We were supposed to meet J at the "Hotel Slavija" at 10:50. Well about 8 am we both fell back asleep and woke up at 10:30! We dashed out the door and of course, our luck was long gone. First we couldn't get the door to lock. Then we couldn't find a taxi right away. Finally we got one and he asked us where and we said the name of the hotel. He repeated it, we repeated it, he repeated it again. Of course he was the slowest and most passive driver in Belgrade, I think LOL, and at first I thought he was taking a long way around to get a bigger fare. But then he pulled up to the "Hotel Srbija". I was near tears then and after we said no and repeated the correct hotel name, he headed back into the awful traffic - apparently there was a strike going on so everything was moving so slowly. I was so ready to burst into tears.

Finally we made it to the hotel and we all headed off to the Ministry building in the same taxi, but the traffic was at a standstill and we ended up getting out and walking the rest of the way. We were nearly 30 minutes late for our meeting. :(

But everyone was understanding and the meeting was short and simple. We found out a very little about Em's birth family - her mom is a nurse and she had another baby - a girl - already. I was very sad to hear that, how awful to never know your sister. I remembered how studies done in the U.S. show that siblings of children with Down syndrome are more mature, well-adjusted, caring people than those without... it is a loss on both sides.

We then went to meet Emerson! I thought I would certainly cry - in fact I planned to sob and embarrass myself completely! :) But when they brought her to us it wasn't like meeting her for the first time, it was like we had just been apart for a little while and we were seeing her again, and I had no tears. She is so small, I just wanted to feed her LOL. She was very cautious, almost like she wasn't completely with us, but we could see flashes of potential - after a little while she realized that the toys we gave her came from the black diaper bag we brought and she kept leaning over and looking around us at the bag on the table, like she was wondering what else was there. She soon discovered when she threw a toy we would pick it up, and had fun testing that cause/effect relationship. She is not sitting unassisted, though her trunk strength is good and I think she can be pretty quickly. She was perfectly quiet the whole time, and no smiles to be seen. She took some formula/pediasure, through a Playtex nurser held upright, but definitely has some trouble with lip closure - the hole in her regular bottle is cut very wide so she is not used to having to work hard to get her food and was not happy at first. Most of it leaked out the corner of her mouth. She is so funny with her tongue - she seems to use it like another hand, to test and explore things. She wouldn't stop kissing herself in the mirror - she knows how beautiful she is! ^_^

This morning she seemed to get much more comfortable with us - she looked at us directly in the eyes, babbled (I think she has many more sounds she is keeping from us!) and surprised us with smiles and a few giggles when we tickled her. It was like she was starting to wake up. This time when we fed her she kept her lips tighter and spilled much less - she seems like she has a great appetite and took a full 5 oz by the time we left. When we tried to stop she would whine and lean toward the bottle. I stood up with her and held her over the table and she leaned down and grabbed the bottle LOL! We tried some baby food and she has A LOT of tongue thrust and even gag reflex still. Feeding will be a challenge, new territory for us.

Her upper body tone seems pretty good I think, her lower body is very low tone though. She rotates her hips out in a way that makes me cringe - worse than Dawson ever did - but we are already working on keeping them together, adjusting them constantly. We were amazed when we lay her down on the little daybed in the room and she commando crawled over to the toys! Even when I reached out and pushed her hips into place she kept going - she is very determined and in this area, has Dawson beat! He couldn't care less about crawling LOL. If we can just get her lower body to coordinate with her upper. :) Yesterday she refused to bear any weight through her legs, but today she stood supported for about 10 seconds at a time.

She transfers toys from hand to hand like a pro, is already starting to get the idea of putting a ball into a toy, and pulls rings off a ring toy easier and more purposefully than her little brother. :)

I can't wait to get her home, to have her play with our wonderful therapists and see all that potential start blossoming. We were told after spending about a month in the hospital she lost a lot of her personality - she'll never be alone again so we are very hopeful she will find it again.

Of course, in the end, none of this matters. We adore her and ultimately just want her to be happy, to be surrounded by love like Dawson is, another little sun in our sky.

worth the wait

2009-05-14T07:28:00.001-04:00

Internet is finally working AND our wonderful facilitator hunted up an adapter for us! It has been such a hard past few days, not able to talk with our kiddos back home and feeling totally disconnected from our familiar world.

We are off for our second visit today with Emerson, so I will have to post something more substantial tonight - for now, just a few pictures. We are finally with our sweetie, and we are in love! ^_^

we're here!

2009-05-12T11:48:00.001-04:00

Just a quick post to say we have arrived safely! Unfortunately with no internet connection in our apartment - we're told it will be up tomorrow so hopefully - no cell phone anymore because we forgot to pack our electrical adaptors for the charger and haven't yet found a store that sells them.

Hoping tomorrow everything gets resolved and I can post some pics!

it's time!

2009-05-10T22:42:00.004-04:00

I just finished up the last suitcase and will spend a couple hours straightening up the house before heading to bed late (in hopes of falling asleep on the flight from DC and waking up in Frankfurt at 8am local time totally adjusted to the time difference LOL!!) and we will be heading out to the airport in about 12 hours!!! Next post from me will be late Tuesday morning EST if all goes well (or maybe sooner if I can get WiFi in Frankfurt!)

I planned to take pics of our suitcases but don't feel like digging out the camera - needless to say, our total luggage weight is about 350 lbs O_O
Most of that is donations, gifts and food/toys for Em ... we had to work hard to squeeze in clothes for us LOL!

I very nearly burst into tears thinking about saying goodbye to the kiddos but then again I also nearly burst into tears thinking about that first meeting with Emerson. :)

I have to remember it is not really goodbye, just vidimo se uskoro -
see you soon!

70 hours

2009-05-08T16:24:00.003-04:00

AAAAAAAAAAAAAAAAAAAAAAAAAAAAHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHH!!!!!!!!!!

*Ahem* Okay, now that I've got that out LOL...

I am in full last-minute panic mode, I think I have about 8 hours of cleaning, organizing, cooking and packing left to do and most of that has to be done after bedtime because the kids are all pretty keyed-up too, picking up on our distraction and stress of course. Matt just finished up all of his projects at work and we're now off to pick up some pictures of our family to show the officials and a pizza! ^_^

I will post more Sunday night before I pack up the laptop in preparation for the big day! :)

in pictures

2009-05-05T01:53:00.005-04:00

Just had to share one more - I love her wild hair LOL! Aren't we so lucky to have so many beautiful pictures of our sweetheart? We have gotten to watch her grow up the last year in pictures - more than enough to fill an album. Not all adoptive families are so blessed, but then again they don't have our wonderful J! We are forever grateful for her. :)

To answer a question, yes we WILL have internet access in our apartment - so you can expect many pictures and comments not only about Emerson but about Belgrade as I try to absorb every detail I can so I can share it with her until we go back as a family.

Here are some pictures of our other cuties.
Do you think if the officials ask us why we would want to adopt a child with DS we can just show them a picture of Dawson's smile and they will understand what can never be properly put into words? :)

the countdown is on!

2009-05-04T00:20:00.000-04:00

Oh my goodness, only ONE WEEK until we leave!!!

We really did accomplish a lot this weekend, but never enough of course LOL! I have so much to do this week I get dizzy just thinking about it. The house is in shambles right now as it seems when I get one room clean the mess just moves to another - anyone else notice that? Our backyard is in shambles too now as Grandpa's playset for the kids came in and we had to dig up and take down the old one (which now has to be taken apart and taken to the dump!) My To-Do list seems to have a whole lot of To-Dos left, eek!

My goal is to have it all done by Friday so I can spend the weekend spending time with the kids. I am starting to feel major panic and sadness when I realize how soon we're going to be leaving them. :(

I really don't know how I'll survive without cuddles from my Dawson, his sweet hugs and soft smacking kisses, but I remind myself that I will have another little cutie to cuddle with in the meantime. :)

pretty in red

2009-04-30T23:50:00.005-04:00

Look at that hair! And those cute little teeth - they angle just the same way as Dawson's. And those eyes - aren't they the most amazing eyes? - click on the close-up and you'll see what I mean. They are just like Macy's, with the extra dark ring around the center of warmer brown. She looks so much like our other kids, it's strange! :)

I can't wait to hold her - but not sure how in the world I'm going to give her back twice a day. Can't I just sleep in a chair by her crib? ^_^

little princess

2009-04-29T16:37:00.003-04:00

We got updated measurements on Em today - oh my she is a peanut! Only 16 lbs and about 28" long. I overestimated her growth these last few months and I think we'll need to buy some more 9-12 month size clothes. Hopefully we get her filled into the bigger clothes soon. :)

We get to see this beautiful face 2 weeks from today! ^_^

2 weeks to go!

2009-04-27T00:01:00.000-04:00

Yesterday marked 11 months since we committed to our sweet Emerson... and today marks just 2 weeks until we leave to meet her at last! ^_^

I didn't accomplish nearly as much as I wanted to this weekend (but with 4 little ones, that's to be expected!) and of course I am procrastinating now. All of my insane notes and meal plans and grocery lists are done, though. We all know how much I love paperwork. Cleaning and other mindless activities always fall to the bottom of my list LOL, especially when it's nearly 90 degrees all weekend (ugh!! Just a week ago we were having snow flurries!)

This week will be very busy. We're going to the Magic Paintbrush tonight, we have 3 doctor appointments between Wednesday and Friday, the boys start t-ball on Thursday and I have a parent-teacher conference Friday morning for Cade.

Oh and Matt and his dad got out of their playset-building project - they are hiring someone to come build it the weekend before we go! He still has to take down the old one but geesh - can I hire someone to come and scrub the kitchen cupboards for me? :)

adventures in preparations

2009-04-25T00:00:00.004-04:00

I finally started tackling the suitcases again last night - I had to check some of the gifts we're bringing for the people involved in the adoption because some stuff is silver and I worried it might be starting to tarnish after sitting in a suitcase for 9 months LOL ^_^ Everything looked fine though, so I got 2 of our 4 suitcases to be checked finished and weighed - one came in at 47.8 lbs so fingers crossed our scale matches up with the scale at the airport!

In my packing I was forced to admit there is no way for me to fit the adorable squeeky shoes that were donated to us for the other children, so we will have to pack them up and ship those out when we get back. Too many gifts, too many donations heh - I can't complain. :)

I plan to finish up the packing this weekend as well as all of my obsessive note-writing for Grandma and Grandpa (including weekly meal plans and corresponding grocery lists ... er, did I mention that I'm a little obsessive about planning?) and get started on cleaning. Ugh, my favorite!

We also have a new thing to add to our To-Do list before we leave (which may or may not be insane), a very generous gift to the kids from Grandpa ^_^

!!! We have a playset now but it only has one swing and well, our kids live for swinging. :) Yeah, Matt thinks they can put it together the weekend before we go. Hmm...

Suddenly MY list doesn't look so daunting. ^_~

proof positive

2009-04-21T19:09:00.002-04:00

Today we got Emerson's plane ticket in the mail (well, the ticket has her birth name - Andjela - on it, and our last name, as her first name will not be changed until we complete the readoption process here in New York) - it felt like I was tearing open the I-171H again LOL, I was that happy to see it! ^_^ It feels like the first real proof that we are going to Serbia soon, and we won't be coming back alone!

We wired our deposit for our apartment today, too, one more thing to mark off my list. We're going to be very close to the orphanage, about 1 mile, a couple blocks south of St. Sava's Temple, one of the things I can't wait to see.

I have such a long list of places we must visit that I'm wondering if we'll actually have enough time to do it all! :) I'd really love to take a little trip out to a few places like Vinča, Mt. Avala and the Golubac Fortress, but it all depends on when we complete the adoption and are able to spring Em from the orphanage, how quickly we can get the Embassy stuff done and of course how Em is transitioning with us. At least there is plenty to keep us busy in the city itself! :)

I feel like I still have so much planning to do. I did finally create a second duplicate blog since we are at our max 100 readers - it's weird having two blogs exactly the same LOL. So welcome to our 30 and counting new readers! :)

As of tomorrow, only 19 more days to go until we leave!!

so excited!

2009-04-17T14:26:00.002-04:00

We just called and made our payment for our airline tickets - and surprise, the agent managed to find us a deal with one slight change on the return flight that saved us over $100!!

I am blown away by all of the amazing comments, emails and general support we've received - just over one night we received around half of what we were short! I really can't thank you all enough for sticking with us so long - I think the dreamlike state I've been in is starting to wear off and it's finally starting to seem REAL. ^_^

making plans

2009-04-16T07:49:00.007-04:00

One of my favorite things to do! :)

We have all of our reservations made - the good news is that Golden Rule got us a better deal than those "cheap" travel sites! Bad news is it is still a bit more than we hoped AND we found out the apartment we've been planning on using (which happens to be both the cheapest and the closest to the orphanage) isn't available for a few nights that we're there. So instead of changing apartments three times, we went with a different one - we talked the owner down a few Euros so it's not too much more than the other one, and it's only 3 streets further north. It's very modern looking with lots of red and white - I feel like calling it the "Love Shack" or something LOL ^_^

So we are about $350 short of our budget needs, which seems much less daunting than $500! :) A few people have asked and we would be grateful for any donations now - either through our Reece's Rainbow fund, which will be tax-deductible, or if you prefer you can donate funds directly to us through PayPal, I've added a link at the bottom of this post. :)

Our flight leaves Binghamton around 2 in the afternoon on that Monday 5/11 and we'll arrive in Belgrade about 2 in the afternoon the next day - yikes! We booked to come home on Saturday 5/30 and we will be hoping and praying that is enough time to complete everything, though the great thing about Golden Rule is we can easily change our tickets if needed.

My agenda for today is just to get Em's cardiology appointment set up for the first week we're back and to let our family know. Matt's parents will be staying with the kids while we are gone.

Then next week will be packing, the week after that will be cooking and freezing some meals to make life easier for Grandma and Grandpa, and the week after that will be cleaning like crazy. I'm getting so excited! :)

the one you've been waiting for

2009-04-15T09:33:00.005-04:00

How long I've dreamt of writing this post... how many times I planned out what I would say, the size of the font, the title. And how many times in the last few months I prepared myself for another post, a sadder post.

Are you ready?

We
have
a
date!

We will leave Binghamton on May 11 and meet with the officials - and then our angel - on May 13.

I don't have too many words right now as I think I'm still in shock LOL, and my mind has turned to worries after seeing the airfare this morning...I am waiting to hear back from Golden Rule before I really panic, but based on the cheap websites we're at least $500 short of what we need, as we feared we would be. I'm sure it will work out.

I wasn't sure how I would react to that email...I confess I have become so discouraged about this adoption, I was beginning to think I didn't care about her anymore. I just started crying though. ^_^

May

2009-04-13T16:52:00.006-04:00

We heard from our facilitator today. April is certainly out as one of the officials will be out of the office from now until May 4. There was a time when that sort of information would have me near hysterics (tears or laughter, take your pick) and wanting to scream, WHAT ELSE?

I'm past that though.

So, some dates are being tossed around. We really prefer to meet on a Wednesday to save on airfare, so May 6 is a possibility, or the next week, May 13. Of course, this all assumes they'll even give us a travel date right now with the one official gone. Otherwise we would be looking at the end of May.

As always, we'll see. Are you ready to jump ship yet? LOL

no news

2009-04-10T17:56:00.005-04:00

I'd be lying if I said I expected otherwise; ah, the old pessimist has returned. ^_^

I have no expectation for an April travel date. But really, once you've already been waiting 9 months since submitting a dossier, what's another few weeks?

Maybe next week we'll get a date... maybe not.

glimmer

2009-03-31T11:16:00.003-04:00

News from our dear facilitator today.

Emerson's paperwork was released from the Ministry back to the Center last Thursday. The Center expects to have the last step - where we are chosen as her family - done by the end of the week!

We might actually have a travel date soon.

A part of me is afraid to latch on to any glimmer of hope, knowing how many times before I've stuck my foot in that fire. But how can I help myself?

Maybe I will get my sweet girl after all. :)

a heartbeat

2009-03-31T00:33:00.006-04:00

I'm nearing 10 weeks and tonight managed to catch baby's heartbeat long enough to get a read-out - 150 bpm! :) Lower than Dawson's and Macy's, more around Parker's, maybe he or she will also share Parker's relatively subdued temperament ... I can dream anyways LOL!

I have no clue what's going on in Serbia right now, I was a little unsettled to get an email today from another family pursuing an adoption there asking me about my experience with the last adoption shut-down. Yes, the LAST one. As in, they have been told adoptions have been shut down again. I am not sure if there is some new development I'm not yet aware of (and I'm checking into that) or if it's still the same unofficial shut-down because of this one person's motives.

holes

2009-03-29T22:02:00.007-04:00

I have done quite well in staying away from our computer for a while. It is easier to forget everything then, to immerse myself in real life - the one laid out before me every day, in this moment.

I think I have moved to a place of sad peace about this adoption, knowing how little time is left but also knowing that we did all we could. Financially, emotionally, spiritually - we put everything we had into our move and have patiently waited for the other player to make their decision, to continue or to stop the game.

As always, I seem to be a study in contradictions; I asked our facilitator to measure Emerson one last time, knowing the clothes we continue to buy for her continue to be outgrown thousands of miles away; and I also took down her pictures from the dining room wall where I had so happily hung them so many months ago.

And I realized, standing in front of that wall, my eyes hovering on that strange empty space below the pictures of the other children... that beautiful face was no longer gazing down at me, but the holes left from the nails were gaping there in the mossy green paint it took me three tries to get right. And I knew that if time does run out and Serbia does not come through for us, those holes would always be there.

For a second I felt this furious urge to dig out the little pail of spackling from the kitchen pantry and fill them, paint over them. But I didn't, knowing the holes would still be clearly visible, the faint impression circling a small bump, the paint color not quite the same as the surrounding green, not having yet faded from the sun that comes in from the big window on the adjacent wall.

Standing there staring at those tiny holes, I knew that if we do not bring our Andjela home to us, that is how our lives will always look. Just as it was before - beautiful, happy faces holding and reflecting so much joy, as if hers never belonged with the others - but forever woven with these tiny little holes, these empty spaces, never able to be repaired completely, always remembering what was, what might have been.

10 months

2009-03-26T08:11:00.001-04:00

news of many colors

2009-03-24T21:38:00.004-04:00

We heard from our facilitator today... some amazing news that she will be attending the very first Down Syndrome Conference in the region late next week and into the weekend! I was so excited to hear this and only wish we could've been in the neighborhood then to tag along with her! ^_^

Our little Emerson is still in the hospital :( but apparently this is not a cause for alarm, it is normal procedure to keep kids with medical issues longer when a bed is available. Our dear friend J did say that the testing they have been doing has shown that it is not too late for her for surgery - I admit I won't feel entirely comfortable without being able to have her checked here and see the results myself - but it was comfort to hear.

J is hoping to meet with some important officials in the first couple weeks of April, hopefully then our paperwork will be pushed along and we will still be able to bring home our angel before they close adoptions down in June and we are forced to release our committment.

I would be very surprised by an April travel date and think May is our one and only chance. We will be short at least $500 on the increased costs for that month - so I am trying to think of a good fundraiser to do, and if anyone feels called to donate to Em's fund it is going to be needed no matter what transpires in the next couple months, either by us or by a new family working toward bringing her home ... which I try not to even consider :( ... and we would be very appreciative even if we are forced to release our committment in June.

And, one final piece of news I've been waiting cautiously to reveal (and explains the pumpkin pic above LOL) - and am still cautiously announcing, but I wanted to include a cheery spot in all of my recent sad posts.
We are very unexpectedly.... expecting! :)

A few of my readers already know this incredible development but for those that don't - no, it was not planned at all LOL and no, this doesn't change how much we love Emerson and still want her to come home to us. I am due around October 28, I'm 9 weeks right now and though I haven't yet found baby's heartbeat on my not-so-wonderful doppler, I have been feeling flutters for a few days now (4 babies in 4 years = paper-thin uterus LOL). It is best to keep this under wraps as much as possible until everything is complete, so I'm glad for a private blog right now!

We are going to have a very crazy fall and winter this year, hopefully Em is part of the sweet chaos and enjoying being a big sister x 2! :)

forgetfulness

2009-03-22T21:19:00.003-04:00

Yesterday was World Down Syndrome Day. I admit I completely forgot what date it was, let alone the special significance of that date. I normally would do something special, make a montage, write some overly wordy post LOL... I just don't have much heart for those sorts of things these days. Anyway, Happy Belated World Down Syndrome Day.

I can't describe how sad I am lately. I feel like I'm being brought full circle, back to the person I was before Dawson, before Down syndrome... the angry, bitter person convinced the world would never change. Maybe I'm just being brought back down to earth a bit - there are good people out there but there are bad too, ones that will never change, no matter what pretty words are thrown their way. I wanted to forget that forever. I don't seem to get what I want much anymore. ^_^

"Most people give up just when they're about to achieve success. They quit on the one yard line. They give up at the last minute of the game, one foot from a winning touch down."
- Ross Perot

I'm there. Not quite remembering which play I'm supposed to make to get that touchdown.

no explanation

2009-03-20T15:31:00.003-04:00

Every day that passes finds me trying to put more and more distance between myself and this adoption. Airfares are poised to skyrocket, we NEED to use some of our savings and we can't unless we either complete this adoption or give up (we went with a broken toilet for a week before finally admitting we had to spend some money on repairs) and emotionally I am not sure how much longer I have in me. I want our little girl, but I want my life back too. I am tired of our entire world revolving around the whims of some bureaucrats thousands of miles away. I am just ready to deal with the grief and move on.

Today I tried out the subject with Cade. A conversation that left me close to tears and deciding to put off any decisions at least for another week. I don't know how to explain all of this to our kids who have loved this child along with us for 10 months. Macy named her baby doll Angela. :(

Me: Cade, I want to talk to you about Emerson. I want you to know we might not be able to go get her.

Cade: [near tears] NO! I want you to go get Emerson!

Me: I know you do, we want that too. But we have been waiting a very long time and the people in Serbia might not let us go get her.

Cade: Then I'll go to Serbia and punch them and get her!

Me: That wouldn't be very nice, and we can't do that.

Cade: [slumping against me] Well I want to get her. They are just meanies.

Me: I know. We will keep trying really hard, but sometimes we just can't get what we want even though we want it so, so much.

moving down the line

2009-03-19T00:21:00.002-04:00

It might sound silly but it makes my heart so heavy to see our family profile on the "Traveling Soon" part of Reece's Rainbow moving down the page as other families with dates for other countries, or expecting them soon, move in above us.

I remember writing a post about how nice it was to see Emerson's picture on the "Already HOME!" section... under March... and I remember posting something like "hopefully more like February 27."

Naive persistent hope.

We're now under the April heading. Please God let us stay there.