My son Tyler has Duchenne MD, and will soon be turning 12. He is usually a pretty happy kid considering, just seams lately he has been so depressed with the every day issues of dealing with his disease. He also has a learning disability with his Duchenne, so he's more on a 6 year old level rather than 12. He has been asking me more and more lately why he can't walk like his siblings, and it's not fair and will break down in tears. I am usually the strong one and will always let Tyler know that it's okay to be sad and frustrated, but that he is very special and God made us all special in his own way. I just don't know what else to say or do to help him feel better and that he belongs. We were watching an old family home movie on a DVD last night and were all laughing at how funny we all looked at Christmas parties, etc. We get to one part in the movie where it shows Tyler running to the door to see if he could see Santa, he was about 5. It was soooo cute, I said, hey look Ty how cute you are as a little boy. He got really quiet and turned away from the TV and just sat there in his wheelchair at the table staring out the window. Me and my husband said "hey Ty, what's wrong, it's okay". He just lost it, he was so upset and sad, and said he wishes he could walk or run like that again. It just tears my heart up inside, I of course hurried and turned the movie off, I felt terrible, I thought we were all having a good time laughing at the movie, I was trying to make a fun family night, but instead I broke his little heart watching himself being "outside the dreaded wheelchair".
I was just wondering how other mothers, or family members help their sons deal with the depression that comes along with having this disease in their lives.