No Boundaries

My cabbie in New Orleans this morning hailed me with “Good day!” as I left my hotel bright and early to join colleagues at Cafe du Monde, the 24-hour eatery famed for its beignets and chicory coffee. I asked the cabbie if there is a good way to respond to this and he said “We’re coolin’”. If anyone is from New Orleans, you’ll have to let me know if he’s pulling my leg.

For those who use wheelchairs, I was really pleased to see that Cafe du Monde is accessible from the street level, and that the small round tables are surrounded by movable chairs–which means you could easily slide these chairs away and make room for a wheelchair. There are a lot of tables and chairs packed in there, but at 6:30 am it was not overly crowded. It might be different at 1 am!

I’m in New Orleans to participate in the VA HSR&D Scientific Merit Review Board meeting. I’ve read some great scientific proposals that I hope will strengthen the way we provide care to our deserving Veterans.

Ben practicing the snare drum

Before I left Boston, I attended band rehearsal with Ben at Sprague School. I’m Ben’s heavy–I pack up and carry his snare drum, his bells and mallets, and all the music. I then unpack this at Sprague and set it up with a music stand and get everything in place so that he can easily access it. I shuffle the sheets of music around as needed. All other band members do this on their own. I know Ben would like to do this himself, but he never complains that I have to do it for him.

With the help of the assistive technology specialist, Ben’s music is about 70% larger than other kids’ music, so that he can more readily see his notes and follow along. Still–the band conductor has to stop and start the music all the time, in order to focus on different parts of the song, to ask certain music sections to work on specific measures, and so forth.  Ben isn’t able to see where he should start again, so in addition to being his arms and legs, I’m also his eyes.

What I love most about Tuesday band rehearsals is that every 4th or 5th grader in the music room doesn’t bat an eye that I’m there. They know that Ben is playing the music on his own, and that I’m only there to facilitate this. Ben was very reluctant to join the band, probably because he knew he would have to have me there. But seeing that my presence is considered a non-event by his bandmates has made it possible for Ben to just enjoy playing the music and being part of a group.

Those Spraguers are such good people!