The Checklist

January 19, 2018 aortic stenosis, complex heart defect, double outlet right ventricle, hypertrophic cardiomyopathy, Lifelong needs, medical needs checklist, Megan V., pulmonary stenosis, TGA 0 Comments

There is a checklist. It is several pages long and includes medical jargon I don’t know and hope I never have to understand. Every person who has adopted has been faced with this list.

What are you willing to weather?

I agonized over that list, checking and unchecking things depending how I felt in that moment. Some diagnoses were terrifying to me. Heart was one of them and so I left it unchecked. Which is probably why one cold November day, as I sat at my computer answering emails, a recovering Maggie on my lap, her stitches still intact from her palate repair, I laughed when I first saw him. His round face and chubby hands holding a yellow umbrella.

My heart sighed his name, Son, in the same why it had claimed ownership of Maggie the year before. Laughed when I saw that his diagnosis was Complex Congenital Heart Defects. Of course.

And so we raced to him. Got there in five months to the day of when we submitted our Letter of Intent, sure that we would find him cyanotic and weak. Certain we would be landing at home in two weeks and heading straight to our Children’s Hospital. But, as is usually the case when I put the cart before the horse, what we found instead was a remarkably healthy four year old boy, long chest scar bearing witness to the correctness of his diagnosis and the battles he’d fought before he was Son.

And in the busyness of absorbing him into our family and surviving those first weeks and months of language barriers and fear, I lulled myself into a place where he was perfectly healthy. Until one sad night when he lay in his bed, hiccuping from the anxious cry he’d had when I tried to sneak out of his room before he was fully asleep. I lay down next to him, curling myself around his sad and reminding myself that this was posture my bio kids took for granted, but which Abe needed like air.

I put my hand on his chest as he settled into safety, breathing deepening as we spooned. And I could feel it. The raw irregularity of this organ that was so different from mine. Could feel its thumping gait as it sent blood to his sleeping body.

His heart is broken, it said to me. And fear rushed into the space peace had occupied just seconds earlier.

Over these past two and a half years of loving my boy, I’ve been reminded over and over how fragile his heart is. Every time I measure his blood oxygen level on clubbed fingers. Every dose of Propanolol and baby aspirin. But I’ve also been reminded more often of how strong his body it. How he can run and run and you’d never know he’s doing it on half a heart. How he operates on much less oxygenated blood than you or I. How he gets poked and prodded more than the average kid and mostly smiles through it.

He is strong. I see that now that I have stopped defining him by his diagnosis.

We push the envelope because we are envelope pushers. We take him downhill skiing, even though his doc said it probably isn’t the best sport for him. But it’s a sport our family has been doing for generations and so we strap on our helmets and take lots of breaks, sling on backpacks with oximeters and a bp cuff.

He swims for hours in our backyard, playing Marco Polo with his sibs and I don’t implore him to sit the side and take breaks because he can regulate his activity better than I can. And so when he’s pooped, he climbs up onto the porch with me and sips water and takes a breather. And then he dives back in. I won’t be one more thing limiting him, not unless he’s in danger.

So this label I was too scared to check and ended up with anyway, it’s not crushed us. It consumes more of my week than any of my other kids’ health does, but it’s not crushed us. It speaks of a future that is uncertain and short, but that voice can be ignored and it is, most days. It is full of acronyms that I can rattle off like the menu items at a diner (DORV, VSD, TGA) but now that it’s a language I’m becoming versed in, even the jargon doesn’t frighten me like it used to.

The boy has trumped the label and in doing so, has dispelled the fear. This is the beauty of adoption: that labels become children, become Sons and Daughters and mamas become fearless and brave.

Bless it all.

For those who are interested, Abe’s diagnosis stands as follows: Double outlet, right ventricle with transposed great arteries, pulmonary valve stenosis, aortic valve stenosis, hypertrophic cardiomyopathy, post Fontan.

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