How to handle a child's degenerative and fatal diagnosis
July 10, 2012 5:52 PM Subscribe
Tomorrow I find out if my two-year-old son has Duchenne's Muscular Dystrophy. There's no "good" form of MD, but this is definitely the "bad" (and most common) version. Most children with this diagnosis are wheelchair-bound by age 12, and the average life expectancy is 25. There is no treatment and no cure. How do I, as a father, deal with this?
I've checked out the MDA
web site, but it seems to be more advocacy/research than support. But speaking in more general terms, what is the best way, in the long term, to handle this for my two-year-old son and his six-year-old sister? My wife and I are still reeling from the news (we brought him in today to get fitted for some orthotics, and we left with a tentative diagnosis of MD and a blood test, the results of which we will find out tomorrow) and we're not quite sure what to do.
I want my daughter and son to have as normal and as joyful a childhood as possible: camping trips, drive-ins, swim parties, story times, trips to the zoo (and all of this we already do). But how do I handle this, knowing that there's a fucking train wreck in the future, and every missed step and sore muscle and unnecessary fall is just another sign of the tragedy to come?
Has anyone else been in a similar situation?