Friday, July 31, 2009

the other side of the rainbow

(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.