“The kids on Deccan’s hockey team are all so focused on the future. They’re on the ice five or six times a week, and their parents are all so optimistic and full of dreams. So, of course, the other parents are always wondering what we have planned with Deccan. ‘Who’s his skills coach? Where’s he playing next year?’
We have to tell them that we don’t plan that far ahead. We have to focus on today. When Deccan was four years old and making trick shots in the basement, we never expected he’d be able to skate or play on an organized team at all. With Duchenne muscular dystrophy, you never know when the symptoms are going to start or when they’re going to worsen. So when Deccan was four and doing well, there was this understanding that we were likely to see a decline in the next year or two, and we were grieving that in advance.
“There are so many ways this could go. But, for now, Deccan’s giving his all on the ice and he’s dreaming up new trick shots at home. He’s knocking a hockey card out of my mouth with a sponge puck from across the room on the first try.”
Now that he’s six and still doing great, we’re just appreciating each good day and hoping that tomorrow is another one. At the same time, there’s this fear that we’re letting him fall in love with something that’s going to be taken away from him. And he loves hockey so much.
We know other Duchenne families with kids Deccan’s age who aren’t walking, let alone playing competitive hockey, and it’s sobering and heartbreaking. It’s unfair that Deccan has Duchenne in the first place, but it also feels unfair that he’s doing so well when so many boys aren’t. It’s so hard not to be able to help those families, not to be able to tell them some secret trick that has made Deccan thrive. And we’re balancing this role of being a sort of Duchenne ‘success story’ with not wanting to give false hope and also with knowing that, unless research moves very fast, tomorrow could look very different for Deccan as well.
There are so many ways this could go. But, for now, Deccan’s giving his all on the ice and he’s dreaming up new trick shots at home. He’s knocking a hockey card out of my mouth with a sponge puck from across the room on the first try. It’s hard to worry too much about the future when amazing things like that are happening in the present.
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