Thursday, February 18, 2010

sick days

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. ^_^

Friday, February 05, 2010

the middle

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. :)

Thursday, February 04, 2010

an open letter to Beech-Nut

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

Monday, February 01, 2010

out of sight

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. :)