Reality

We had hoped Disney would allow us to escape the reality of our life and this disease but unfortunately even amazing vacations include DMD.  I couldn't help but be jealous of other families.  How come the grumpy lady on the bus got 3 healthy kids and my son is sick?  I can't help feeling that way and there isn't an answer.


When we got this diagnosis Shelby and I said well we have 7 years before the wheelchair so we will live it up in those years.The problem is we get 7ish years of a slowly progressing disease. It isn't just that one day he wont be able to walk. The disease is already happening and as much as we want to pretend it isn't, in a place like Disney filled w/other 5 year old boys we can clearly see it is.

Robbie is sick all the time, everyday things are a struggle for him.  I nearly lost it a few times watching him struggle up stairs. Its the small simple things that break my heart.  Seeing a brother and sister in their teens going to Magic Kingdom at night by themselves and realizing Kelsey and Robbie will likely never have that. Watching a big brother helping the mom while holding on to the little sister and knowing Madi can already over power her big brother.  Seeing 8 and 9 year olds run on the pool deck. Watching Robbie's joy when I let him stand on the bus. the thing that is the hardest is seeing people that just don't seem to appreciate how lucky they are.  People wasting precious time on grumpiness when they have healthy wonderful children drives me crazy.

I cried when we left Disney. Knowing we were coming home to 3 appointments this week and a sleep study next week it just seems so overwhelming again.  I hate this disease. I hate what it is taking from my family.  I wish it wasn't part of us.

I had a great vacation but DMD was ever present. It cannot be escaped or forgotten  It is always our reality.