At the beginning fo this week I began drafting a new post about how it was another year and once again we were fighting to get an air conditioned bus for Charlie to ride on. For those of you that don’t remember, Charlie’s brain damage has left him unable to properly regulate his body temperature. When in the heat, he turns very pink and then becomes limp and lethargic. Our neurologist has informed us that if we aren’t careful, this could even lead to a seizure (like when a child seizes from a high fever).
Last year I let Charlie ride the bus in the morning, but the afternoon was a no-go, so I picked him up from school. By the end of the year, I was so completely exhausted from Parvo and pregnancy I paid someone to bring him home every afternoon, which the school didn’t really like.
This year I’ve got two infants (and a hernia), so I knew that I needed to have the afternoon bus as an option. I had it written into the IEP in May, had the neurologist write a note, faxed it to the nurse before school started, etc. On the first day of school, it was the same bus as last year–the one with no air conditioning.
I pretty much resigned myself to another year of picking Charlie up, but his teacher was very nice and faxed the request to transportation for an air conditioned bus.
The next day, a new bus driver called–she has the route now and has an air conditioned bus.
And me? I feel like a horrible person. I’m the reason that the old bus driver lost her route. And what happened to her? I don’t even know. I like the old bus driver. She was really nice on the days when I was late getting out the door, and she made gift bags for the kids. She really cared about them. It doesn’t come up much here on the blog, but I am a HUGE fan of community and this feels distinctly un-neighborly. Ugh!
So now we have our air conditioned bus. Charlie can ride to and from school and I don’t have to worry at all about overheating or seizures. We got exactly what we needed without having to beg or fight or anything. This is just what we wanted.
Some victories are bittersweet, though.