I have decided not to go see the Vice-President of the United States so that I can stay home and be a housewife. Is that a moronic decision? I have a ticket to go see Vice President Biden and Governor Corzine but I am concerned that the traffic and security measures in place at the college where I work and where they are appearing will make me late to pick my kids up from school and take Max to therapy and Sophie to gymnastics. I am struggling with this choice because part of me just feels lazy and part of me feels like a good mom. I have been at war with my political career and my mother career for the last few weeks and will at it once again several times this week and next as it is the last two weeks before the election.
VP Biden won’t miss me. He won’t even know I am there. Corzine won’t miss me either – he doesn’t even know who I am (even though we hang out with the same folks and my name will be in Column A too!!) Max and Sophie will miss me if I am not standing outside their school at 2:45 this afternoon. Today, they win!
Now, onto other things. ..
I went to a party this weekend across the street and met some people I didn’t know. The weirdest thing is that they all knew Max and have spent a great deal of time discussing him with their children. He is very visible in school. He is the only kid with a large device attached to him at all times. He runs around the school making loads of noise , running down the halls and being completely adorable and sweet. He appears to be the picture of self-confidence, well-adjustment, and inspiration. These people apparently have referenced him several times to their own children when those “typical” kids are having a hard time. They have also addressed numerous questions and answered their own children’s fears. Apparently, Max is the “good example” parents have been using to teach their children.
I am not sure how I feel about this. Yes, I am proud, yes I am impressed, but mostly, I kind of wish he weren’t the town’s poster child. He seems like the human equivalent of the kitten in the ubiquitous poster hanging from a tree branch in every pediatrician’s office… you know the one, ” Hang in There!”
Behind the face of this tiny role-model is a tiny boy who is also struggling some of the time and a not so tiny mommy who is struggling a lot of the time… I am worried about new things for him. I am worried that he can’t take himself to the bathroom and had to depend on someone last week who didn’t seem interested in rushing too much. I feel horrible that I had to pick him from school because he had an accident. I am terrified that he will never be able to use the bathroom alone and what kind of life is that? Will he never have a girlfriend? Will he ever be able live alone, go to college, go to to a party in college? What about the fact that he can’t dress himself? I have been working a bit on this but it is so hard for him, I usually give up. I don’t want to discourage him and I want to teach him, but come on, school starts at 8:30…
How will he learn these things? I know adults with CP struggle with these things. I have seen them. I have met them. I know them. I don’t want Max to go from being the poster boy for first graders to the pity of adults.
It’s great that he is known, it’s great that he is admired, it’s great that he is an inspiration… but I would trade all those admirable qualities for the guarantee that someday he might be able to pull up his own pants.