Griffin is a teenager.
Lately, I have been feeling the weight of the grief that all parents must experience, but we never really acknowledge or talk about much, beyond annoying exhausted new parents with comments like "enjoy every minute, it goes by so fast."
The little boys I used to have are gone, never to return. They don't exist anymore. I would pay good money to go back in time, for just an hour, to spend some time with them as babies. To play with them when they were toddlers. To bask in their babyhoods for just a little while. It seems silly to grieve the loss of all those previous versions of my children. But each night when they go to bed, they wake up the next day a little bit different. A little bit further from who they used to be. I miss them, those hundreds of boys who came before the ones I have right now.
Like any parent, I moon over pictures of my children when they were little. I show them to them and say things like "awww, look at you!" For a while now, Griffin has been telling me he doesn't want to look at pictures of himself when he was younger. He says that he was never cute, and never little. I assumed at first that he just didn't want to be thought of as a little kid anymore. But recently I finally asked him why, and he said that it is because he used to be normal. He used to be thin, like his brother. He used to look like all the other kids, and be able to do all the same things other kids his age could do. He doesn't want to be reminded that things have changed since those (adorable, smoochable, squishable) happy go lucky days.
It's no wonder that we tend to think of 13 as an unlucky number. 13 is hard. It's a hard age to be. The glowing softness of your childhood is beginning to crack, opening up to the hard edges that come with adulthood. Adolescence brings with it strange new feelings to navigate, new social pressures that are confusing and yet feel like the most important thing at the same time. Standing out feels dangerous and lonely. Only the brave continue to confidently be who they have always been. And often, they pay for it.
When you are 13 and slowly losing your ability to walk while all your peers are getting stronger, the fear of being so obviously different seems worse than the loss of ambulation itself. When you are taking a medication that is keeping you from growing, when everyone around you is going through the biggest growth spurt of their lives, rivaled in speed only by the rate that newborn babies grow, but you stay the same, you have been the same height for two years and counting, it feels like there could be no misfortune in life any worse. When this same medication is not only stunting your growth but keeping you overweight and making your face puffy, it hardly seems worth it. Stop taking it, though, and you risk hastening your physical decline. Better keep taking it.
The future looms cold and cruel. How could an overweight, puffy, short person who can't walk ever have any fun or do anything good in life? Who would ever want to devote themselves to such a person? It doesn't occur to you, at 13, that being funny, thoughtful, creative and courageous, with luminous eyes like dark, deep pools, could count for anything. On top of that, you are 13, and feel all of the things the other poor 13-year-old souls are feeling. The responsibility of adulthood feels like an elephant sitting on your chest. Global warming. War. Social unrest. Pandemics. Paying bills. It's all too much.
That is where we find our boy today, as he turns 13. It has always seemed like an especially cruel twist that Duchenne has its victims losing ambulation at this tender and tumultuous age. I know he will come through it, that the darkness will lift. He will adjust to this complicated new world he must move through on his way to adulthood. The happy, tenacious child with an unquenchable zest for life remains. The boy who at age 8, when asked if he felt scared, said "I'm never afraid of fun," is still in there.
Like all of us, once the shadows of adolescence lift, he will come back to himself. He will be confident again to be who he is, to accept and work with his limitations as he has always so naturally done.
And for us, his parents, all we can do is stay present and available, like the shoreline in the distance he can always make out, even in the thickest fog. Ready with a port in all the storms that lie ahead. There for him to anchor to when he feels unmoored. There to rejoice in the bright, sunny days that occasionally break through the gloom, to welcome him when he returns to dry land and is ready again to climb his mountains.
Here's to 13.
