Monday, February 11, 2008
Break Your Heart
We went to the physiatrist this morning. (deep breath) I have heard a lot of good and bad news over the years so I pretty much know when what a doctor tells me is off the mark. In the same respect I typically have an idea of what I am going to hear when we visit any of our 11 or so doctors and therapists. So what. It doesn't mean that I want to hear it. It doesn’t mean that anything can prepare you for hearing anything negative come out of a doctor’s mouth. Just because I know its coming doesn’t mean that I want to hear it spoken. It also doesn't mean that I will swallow it and move on. It means beginning a whole series of questions all over again. Like: why?, what went wrong?, what did I do wrong?, what didn't I do?, what should I have been doing?, who's fault is this?, how can I do more?, am I strong enough?, why can't I suffer instead of him?, will anything ever be enough? I doesn't matter that our situation hasn't changed. It doesn't matter that we will do what we have to do to move on. I doesn't matter that what is said was expected. You go right back to the beginning and start over with the doubt, guilt, blame, fear and heavy heavy sadness that once again life is not and never will be simple for a child with CP. Four months ago Ben had hypotonic cerebral palsy. Today he has spastic cerebral palsy. No big deal. We stretch him everyday. We knew it was coming. But I didn't want to hear it. I also didn't want to hear intensive intervention or Baclofen or Botox or risotomy. At the appointment today Ben said that his legs wanted to be straight. The doctor and I looked at each other and I told Ben that that is why we stretch his legs, so that they will bend easily. He said "Let’s just let them be straight Mama." He is tired of this whole thing too. At school a student assistant had a cute story to tell me. She is using crutches and was helping Ben at his locker. He said "You use something to help you walk too." She agreed and he said "Now I don't have to feel alone today." I cried all the way home.