different.

For the first time since Sam being diagnosed with Duchenne, I realized that he knows he's different.  We went to a friend's birthday party last Friday at one of those indoor play places (like Chuck-E-Cheese's, but way cleaner and with no pizza), so I knew it would be a challenge for him.  There was no way in the world he would have missed his buddy Nathan's birthday party.  Not only was it a challenge, but it was a complete shit show.  He got leg cramp after leg cramp.  We tried resting.  We tried hydrating.  He just couldn't keep up and do the physical climbing and running and jumping.

As I was sitting in this room with all these parents and their normal kids running past us, I massaged his legs as he cried.  Real tears fell down my son's face (and mine) because he knows.  And as I told him over and over how sorry I was that he wasnt feeling great, he asked why his muscles have to be sick.  Why did God make him that way?  Why didn't his friends have sick muscles?  Then he said it: "it's not fair, mommy".  It isn't.  He's right - it isn't fair.  It sucks.  I swear you could have heard my heart break.  I don't know why he was chosen to go through this.  It makes him so special and I try every day to make him understand that.  I hate it that he's different.  I hate it that he knows he's different.  I hate it that his friends had to see him crumpled up on the floor because he couldn't get up or walk because his muscles just gave out.  I had to carry him, like a baby, to the bathroom and hold him up so he could pee.

He stared out the window of the car all the way home, tears running down his face and saying he had fun when I know he didn't.  I can't even explain to you how helpless I felt.   

In a couple weeks he's going to feel even more different - he's going to start wearing leg braces to school.  Every day.  I can't imagine how that will make him feel.  He has no idea how kids can be so mean and I just hope, with all of my being, that his friends won't treat him differently or damaged.