and cannot sleep.   Stared at Javier for what felt like a really long time. Still unable to stop or even slow the racing in my mind… listened to him breath, watched his restless sleep, tossing and turning in discomfort caused by cumbersome leg braces. Tick-tock, tick-tock… not sleeping is nothing new; writing instead of trolling message boards looking for other Duchenne parents awake at this ungodly hour (or in a different time zone), writing instead of reading more about the progression of the disease than is necessary or good for a parent’s survival… this is new.

I had some time this evening and used it to go through hand me downs from Javier’s cousin harry and to pack up clothing that no longer fits for Javier’s new cousin (arrival imminent). A lot of Harry’s clothing has a sporty theme; so many shirts are emblazoned with a football, a baseball, a soccer theme. I imagine how Javier might feel, as he gets older, wearing this sporty clothing, representing games he will be unable to participate in. Every shirt that passes through my hands, every Nike swoosh, every rah-rah football is like a cruel joke. Despite that Javier is a couple of years from even fitting into this stuff, I angrily toss each item into a bag for my brother’s baby that isn’t even born yet. Irrational?  Maybe.  But saving clothing that will not fit for 2 to 3 years, during which time his body will deteriorate, becoming less and less “athletic”, forcing this wardrobe issue to be addressed again in two years is not something I want.

Then I come across a box of stuff I haven’t looked at or thought about in ages; a box with a few outfits I saved from when Javier was a newborn, a rattle and the blanket I had him wrapped in almost every day for the first year of his life. I smell the blanket and it smells like promise. It smells like infinite possibility. I remember that first year of Javier’s life, of all our lives that year; talking about what an amazing salsa dancer Javier would no doubt be, what a real live latin lover he would be, what college he would attend and all the girls that would never be good enough for him. For a split second I think about throwing all of it in the bag destined for my brother’s baby. I kept it. I kept all of it. Maybe in another year or two, when I’ve forgotten it is in the back of the closet, I will come upon it and smell all that promise, all those possibilities again. That Dreft baby detergent, it is an amazing product… how they infuse clothing with the scent of potential is amazing.

I took for granted that Javier would have the world laid out in front of him, with only the normal wackiness of youth as his personal hindrance. We all took that for granted the first time we saw him. The infinite possibilities have given way to an intense hope on good days, a terrifying anxiety on others. The hope we hold out for is that there will come a time when science will catch up, that Javier is here when it does and that one day… one day we will be rewarded by being able to take something as extravagant as Javier turning 30 for granted.

With your support, nothing is impossible.

With sincere gratitude,







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