Something about a birthday

makes me feel the need to reflect on where I’m at, where I’ve come from and where I hope to go.  This year’s birthday, I spent way too much time frivolously daydreaming about what type of person, parent, wife I would have been had I never heard of Duchenne…  Imagining what a carefree parent I could have – would have been, all from the sidelines of a soccer or lacrosse field.

The reality of our personal landscape is that we get to watch Javier lose more than gain.  All of the skills gained in early adolescence (standing up, walking, going to the bathroom without assistance) are being lost by my 8 year old, right before my eyes everyday.  Where there should be cheering for a triumph on a soccer field, this week we cheered the success Javier achieved in finally (FINALLY!) learning to swallow pills – up until now all his meds are compounded into a liquid suspension.  Watching Javier the moment he realized that yes, he could swallow a pill and that no, he would not explode (the level of fear was beyond irrational)… this moment provided all the relief, happiness and pride that other parents feel.  This wasn’t the achievement I imagined feeling pride over when looking at newborn Javier but it was an achievement nonetheless.

Earlier in the week, I found out from school that Javier’s recent IQ test proved him a bonafide genius, with processing speed that puts him in Mensa territory.  Imagining what Javier has the potential to do in his lifetime is bittersweet knowing that Duchenne is hot on his heels, chasing him toward an early departure.  So it’s time to stop imagining, time to stop daydreaming – I am resolute in my determination to change the outcome for Javier and this generation of boys diagnosed.

Note to Mensa:

you really need to work on your selection of merchandise – it’s impossible for a proud mama to satisfy her shopping and bragging needs on your site!






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