He sat at the table for 10 minute shredding half a block of cheese. I sat right next to him. He never asked me to step in he just kept going. i could tell he was struggling and I wanted so bad to take over but he wasn't going to give up so I couldn't either.
When I think about this disease I worry about the future, the scary thing that will happen to my child. It's natural I mean this disease is cruel and it's enough to make me question everything I have ever known. Robbie deals w/ this disease on a much more personal level every day.
Every night when we go to bed that little boy has worked harder then anyone else in our family. he doesn't stop, he never complains, he just carries on. Truthfully Robbie has been dealing w/ this a lot longer then I have. Its incredible to me that the little boy that had to have his head glued together after he climbed our entertainment center was afflicted w/ DMD. He walked ll through Disney(this was before we knew) never once complaining even though we kept saying he was pokey.
He is brave in a way that has to be respected. He is stubborn and proud. He loves unconditionally. If you are one of Robbie's family , you are loved its that simple.
He was so proud when he was finished grating his cheeses for dinner. It's hard to explain how much he struggled w/ it. he worked hard but he was determined in a way i wish I could be when challenges present themselves. Is it strange to get inspired by cheese grating? i don't know it probably is but i have to find a match in the dark, you know?
I have to remember the night he he grated half a block of mozzarella and didn't stop until it was done no matter how hard it got. i have to remember that no matter how hard this for me it is harder for him. That there will be days I want to jump in and make it better but I simply cannot do that all the time.
Robbie's life may end tragically but his life is not going to be tragic. His life is going to full and beautiful, brave and strong, and loving. I might get to see this disease cured or lessened and I might not but I have to, we all have to remember that he is a fighter.
The thing about it that gets me is when I watch Robbie around the other kids his age. There is a grace to their movement and second natured-ness to some of the things they do. Then I watch Robbie, his movements are more deliberate things that other kids his age do without thinking he has to concentrate at it, and then when he does it there is an awkwardness or a clumsiness to the action as he fights to complete the task. In a way it reminds me of that scene in Bambi where Bambi wobbly tries to stand up, he is able to do it but he is awkward and unsure of himself while Thumper bounds around him sure footed. Thing is, Bambi eventually gets his legs and eventually is running in the woods and meadows but Robbie really has to work hard to get there he will always have that awkwardness as his muscles slowly degrade and he has to always relearn the best way to accomplish his task with what strength he has.
ReplyDelete