This week was one difficult seven days. I'm not sure what made it different from every other week but tonight I'm feeling very drained. There were so many events this week which I was brutally reminded that my little boy is sick -- not that I don't know that already, but sometimes our life that I call our normal is flashed back in my face with a huge abnormal sign. Sometimes it just hurts.
This week Gavin was supposed to start a new class at the YMCA. In the back of my mind I pretty much realized that this was not going to work out so well. My fingers were crossed that Gavin would actually be awake long enough to find some enjoyment out the play time. We arrived at the class called "play ball" -- Gavin was wide awake. To my surprise even though the class is entitled "play ball," there is actually no ball playing involved. The entire class is a play time on the gymnastic equipment -- which my little boy cannot do. He can play ball -- and that's what I assumed he would do.
I left the class defeated. Gavin really could have cared less, in fact I think he fell asleep soon after. Me however -- I was almost brought to tears. I think it was the fact that I could not make this happen for Gavin. Adam and I put so much energy into making Gavin's world accessible for him. When I came to the realization that this was not a class my child could participate in because of his disability -- it hurt. I hurt for him.
That same day we spent an hour or so at the indoor pool. Madison was swimming in the deep end and I was sitting on the edge and Gavin was sleeping parked behind us. The aquatics director can over and nicely told me that Gavin's wheelchair is blocking the lifeguards view and that next time I would need to take Madison over to the shallow end to swim, so Gavin would be out of the way. Again I was almost brought to tears -- over the simplest thing. Because in a perfect world I would be playing in the pool with both my children. Sometimes it just hurts.
It is so difficult watching Gavin slip away. We don't know what his future holds. We could have many years ahead but we could also only have a few more days. It sucks to live that way. It's draining to try to fit a life time of experiences into a few short years. It is so draining sitting for six or so hours watching blood drip into your child's body, knowing that we will just have to do it again next week. It sucks.
I know the drained feeling will subside, but I often wonder how Adam and I can possible do this for much longer. We will. We want to. We will do anything for our family. I'm not looking for advice or pity just an open ear.