Why Do I Have Muscular Dystrophy?

We knew the question would come some day, and had prepared ourselves the best we knew how.  But all the preparation in the world couldn't take away the pain of hearing my sweet little boy ask, "Why do I have Muscular Dystrophy?  I don't want to have Muscular Dystrophy."  My heart sank.  We explained to Caleb he was just born with it, and that lots of people are born differently.  We gave him some examples like some people are born not being able to see or hear, some people are born  missing arms or legs, others are born with brains that work differently, and "you were born with muscles that work differently."

"But it's hard for me to do a lot of things.  I don't want to be different.  I don't want to have Muscular Dystrophy."

There was nothing we could say to take away his pain.  The only thing we could do was allow him some space to feel his pain, move through it, and reassure him that we love him so very much even with muscles that work differently. 

We then talked about all the things he gets to do BECAUSE he has Muscular Dystrophy, like eating dinner with firefighters, getting to go to a secret room to pet some sharks at Sea World, and drive his wheelchair - what other 5 year olds do you know that get to drive?  And don't get us started about the walker... "kids are always asking us if they can have a turn riding in your walker!"

"You're right!"  He perked up at this, and became his regular happy self.  We know this is a new layer in his awareness of his disease.  We also know more questions and tears will come.  Hopefully we will always have the strength to be able to help our sweet boy find the balance and peace he deserves in life.