10/11/2013

             I’m not a “blogger” but this seemed like it might be the best way to keep people updated on what’s going on in our lives. Yesterday was hard. We took Joshua to the Children’s Hospital in Augusta and came away with his “official” Muscular Dystrophy diagnosis. While we knew it was coming, there was still a tiny glimmer of hope that maybe the doctors were wrong, maybe it was something else. Nope, and that sucks.

            The timing couldn't have been better, in that it continues our family’s recent history of getting really bad news in October:

           10/2010 – Congratulations, you’re pregnant – but there’s no way the baby’s going to survive. (Thankfully, Abigail is proof that they were wrong.)

           10/2011 – That hernia we were going to fix on your baby? Yea, that was actually a tumor. (Thankfully, it was benign.)

           10/2012 – Joshua was diagnosed with Autism.

           10/2013 – Joshua is diagnosed with Muscular Dystrophy.

           10/2014 – You’ll understand if I just pretend October doesn't exist next year. September will be getting four extra weeks and those special people I know with birthdays – please understand if I claim you were born on September 59^th.

           Usually I’m the person trying to put a happy face on everything, trying to find the positive in each situation. A lot of people find that particular trait annoying – it’s just who I am. But I’m having a hard time finding the happy in this one. The reality is that this new label doesn't actually change anything – it just changes how we view EVERYTHING. Overnight our approach has shifted from “he just needs more practice and he’ll get it” to “OK, maybe he actually CAN’T do this.” This shift has been involuntary and when I realized what I was doing, I couldn't help getting angry.  Joshua’s still the same little boy, still curious, still brilliant, and still incredibly lovable with dimples that melt my heart even when I’m ready to scream. Now he just has a new label. It’s our job to make sure that this label doesn't hurt his chances to be a happy kid. I haven’t completely figured that one out yet.