My son was born with Trisomy 13, also known as Patau Syndrome. It is a genetic abnormality in which an extra 13th Chromosome is found in every cell of the body. It’s a random mutation. A 1 in 100,000 chance. It means he is severely mentally and physically disabled. He’ll likely never walk. He’ll never talk. And he’ll die young. Very young.
I found out about my son’s condition about a week after he was born. And from that moment on, I have been forced to come to terms with my new reality. My new brutal reality; that I would, some day, possibly not long from now, have to let my son go.
I’m quite sure I experienced the typical periods of grief. Or at least, the first one; Denial. I vividly remember believing that my son would be the exception; that he would stun all the doctors, all the nurses, hell, the entire medical community, with how healthy, able and intelligent he really was. The genetic tests would come back negative, or he’d turn out to be an exceptionally mild case. He’d walk; yes he would. He’d run me ragged, galloping all over the house. And he’d talk to me, of course he would. He’d talk my ear off; id never be able to shut the little guy up. And I’d revel in it. I’d watch him and listen to him every moment I could. They’d all see. I’d show them all. My son would show them all.
And in some ways, I was right. He would surprise them all. He'd surprise US all. He’d go on to leave hospital, come home, and he’d continue living, growing, surprising, and thriving. But.... in many many other very important, very critical ways... I was undeniably, unsurprisingly, completely wrong. My son had Trisomy 13; full Trisomy 13. He was a pretty typical case; albeit on the somewhat lucky, somewhat healthy, and somewhat strong end of the spectrum. But, mostly just.. typical.
In trying to cope with his mortality, with the prospect of some day bidding him farewell. A question I have often found myself asking is... how long is long enough? I know my son will die before me. I know he will die early. But how early is too early, for me? If he lived for another 10 years, would that feel like long enough? Would that feel like a successful life for my son? How about 5 years? Or just 3?
The truth is, I’ve never found the answer to this question. And I think the reason is that...no number could ever possibly feel high enough. No amount of time could ever feel long enough.
I still ask myself this question today. My son is now 3 years old, and by most accounts, is doing very well. But I still wonder when I’ll consider his life to be a well-lived one. When I’ll look at it in the way that we look at an elderly person in their 90’s. They lived well, and long, and their time has now come. I want to feel that way when my son passes. I want to know that I did everything I could to give him a life that was both happy and long. I want both of them. I need both of them.
I know he doesn’t really care about those things. They’re daddy things, not Lyly things. He just wants to be comfortable and cozy. He wants cuddles, tickles, and time alone with his toys. He wants to bounce on his daddy's lap, and kick his sister while she plays with his feet. He doesn’t want pain, and he doesn’t want to cry. I know that much. But he doesn’t care about his mortality. When he dies, he won’t know about it. He’ll go, hopefully in peace, and he’ll leave me behind. He’ll leave us all behind.
So... until that day comes. I’ll just keep moving forward. One foot, then the next. I’ll keep pouring my love on to him, showering him in kisses, bathing him in cuddles, and doing whatever I can to help him live well, live happily, live long.
That is my promise to him, to myself, and to you.
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