One of the things I celebrate during National Down Syndrome Awareness Month is Hayden’s strength. He’s 13 now and Jackie Chan has nothing on how he can instantly turn you inside out with a quick twist of a finger (he pretends he just wants to hold your hand and then WAAAHHH, he’s twisting your finger and you’re begging for mercy), but I’m talking about an entirely different animal.
I’m talking about Hayden’s core strength of character and resolve. Maybe he somehow knew he was going to have to endure countless tests, surgeries, ear exams where he had to be held down by an entire clinic staff just to see inside his ear canal, EEG’s, a spinal tap, and more blood draws than I count. I honestly don’t know how he’s done it all. I should, I mean I was there for everything, but much of it is a blur to me now, probably because I don’t ever want to revisit what I hope will always remain history. It takes my breath away to think about what he’s gone through; like the time when he was six years old and he had a central line in his chest to deliver some of the most potent drugs known to man for his life-threatening ear infections and he pulled the line out of his chest first thing in the morning. Ya, like the line had been SURGICALLY placed into his chest (full anesthesia–big operation) and the surgeon and post-op nurses assured us that THE LINE WOULD NOT COME OUT……because it’s clamped INSIDE of him. Two weeks later he PULLED it out. Crazy kid. Did he cry? NO!!! Did he care?? NO!! Was my husband, who discovered the trail of blood drops across his bedroom floor, curled up in a fetal position turning various shades of grey?? YES!! And you know what happens on the day you’re scheduled (or NOT scheduled as in this case) for surgery? You can’t eat!! So before we could pack him full of breakfast, we quickly called our doctor, told him what was going on, made arrangements for our daughter to spend the day and night and a friend’s house, and made the trip to the hospital where he would have the surgery 40 miles away. Here’s what totally blew me away about Hayden ALL DAY that day: he didn’t once ask for food or water, or whine, or protest anything. It was like he knew something was up…..he knew in his heart of hearts it was going to be a VERY L O N G day full of waiting, pre-op procedures, blood draws until finally being admitted to the hospital. He blew me away with his calm resolve.
There are SO MANY things I wish I could tell that parent who has just been told that the baby they’re carrying may have Down syndrome (“may” being the HIGHLY operative word here as many in-utero tests turn out to be completely wrong) or the baby they’ve just given birth to has Down syndrome. But I think the biggest news I have for them is that “It really IS going to be OKAY. Your baby is STRONGER than you know and stronger than you ARE. No matter what his/her future is, he/she will get you through it”. Does that mean it’s going to be smooth sailing for that baby born with Down syndrome? I wish I could say yes, but of course I can’t. Does every baby born with Down syndrome have a path of trauma and medical difficulties in front of them? Nope, some babies don’t have any major medical issues. But I do know beyond a shadow of a doubt, that no matter what lies ahead, our kids have a strength that we can only hope will rub off on us.
With Hayden, beng born deaf instantly put us on a mission to find out why and that led doctors and specialists to discover some pretty catastrophic ear infections just a little too close to the brain for comfort (think encephylitis and permanent brain damage), which led to eight reconstructive ear surgeries and tympanomastoidectomies. We also had to figure out why he needed O2 at birth, which turned out to be a small hole in the left ventrical of his heart (not uncommon for babies born prematurely or babies with Down syndrome, especially at high elevations), which was surgically repaired when he was four weeks old (in the scope of heart surgeries, the “PDA ligation” as it’s called, is relatively minor, but it’s still your newborn baby with a hole in his heart being put completely under anasthesia, where there are NEVER any guarantees). Hayden contracted Infantile Spasms when he was six months old and it is ONLY by grace that he is here with us today. I will probably never fully understand what it’s taken for him to fight to regain all the development and core of “who” he was before the seizures took over. That is strength.
I’m sincerely happy for people who’ve worked hard enough and consistently enough to earn a trophy for anything, but inside I will always know who’s the strongest of them all, and they don’t make trophies big enough for that.
- Posted in: Down syndrome Special needs