To my Heart, at Seventeen
It seems impossible, although I know it’s not. I understand how it has happened, but not really. It couldn’t have been more than just a few years ago, my reeling mind insists, that we rushed to the hospital, only to wait another twenty-six hours before we met you face to face, this person we’d already waited a lifetime for. It feels like just a few months ago that we sat in that doctor’s office and heard the word “polymicrogyria” for the first time, an impossible mumbled mouthful of syllables that came to define so much of the future. It was fewer months ago even than that when when we can to realize that no, PMG really didn’t get to define the future after all. You got to do that yourself. It’s surely only been a few weeks since you learned to use your electronic voice while also finding your true voice somewhere deeper, a combination of technology and physicality and sweet, rowdy human sounds that become clearer and more your own every day. It’s been mere days since you first climbed onto that school bus and I stood outside to watch it drive away as we signed “I love you” to each other. It must have only been few hours ago that you put on a cheerleader’s skirt and then a band uniform. No time at all, it seems, just a sliver of time. And now you’ve gone and done it. You’ve turned seventeen.
It’s funny how it feels like no time at all has passed, and yet at the same time, it feels inconceivable that you weren’t there for so many of the big moments in my life. How is it that you weren’t sitting next to your granny trying not to giggle while your mother and I stood at the front of a lovely university chapel in Kalamazoo getting married? Is it really possible that you never sat in the audience while I played trombone with an orchestra? How is it that you never met my long dead father? In my memory, you feel present for it all. I guess in a weird way, you kind of were.
I tell you how proud I am of you, kind of a lot. I understand that in doing so, perhaps I’ve diluted its impact, maybe lessened its meaning for you. But it’s important to me that you never wonder. There was so much you were never supposed to do. Doctors are great, you know, but they’re not fortune tellers and they should probably stop trying so hard to predict the future. You weren’t supposed to do any of the things you’ve done. You weren’t even given the greatest odds at still being here.
I guess we forgot to tell you any of that, because you’re here, and you’re accomplished, you’re smart and funny and unwaveringly positive in the face of it all. I don’t mean to suggest that your cheer and your happiness are forced in some way. You know the truth, which is something we’ve always tried to give you no matter how hard a truth it might be. You understand the life that your little monster has made for you, or has attempted to make for you, anyway. You’ve simply refused to accept those limitations as concrete. You’ve shamed those of us who’ve tried at various times to define the limits of the person who you can become. For that above everything else, I’m proud of you, heartburstingly so.
This is going to be a tremendous year for you. One more year before the world says you’re ready to be an adult. It’s not so simple as that, we all realize this. We’ve got many complicated conversations to have and legal questions to resolve before this day rolls around next year. But I can already say this, without hesitation and with confidence. I like the young lady you’ve grown into. I’m excited about the adult daughter I’m about to have.
There’s so much more I could say, but I’ll wrap it up because you’ve got stuff to do today that doesn’t involve reading the sentimental foolishness of your old man. So I’ll simply close by saying what I’ve said all along. I wouldn’t trade places with any father in the world, not a single one, although I feel pretty sure there are some who would trade lives with me. The past seventeen years have been the best hours and minutes and seconds of my life. Thank you for that.
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Following your journey with Schuyler has certainly made an impact on me and through me, on my partner. We are going through the process of foster/adopt with children who have special needs. While I have a physical disability myself the world of neurological/developmental issues can be intimidating as I have much less exposure. I appreciate that you (and Schuyler via her willingness to allow you to share) have given us a view not just of rhe triumphs but the challenges. I can tell how much you love her and it gives me confidence that we will have an awesome bond with our future children as well even if their futures have a great deal of unknowns.