Maximize Independence

The Zambian Charity People came yesterday and were super nice. They picked up both of Sarah’s wheelchairs as well as some other medical equipment odds and ends we had for their mission to disabled kids. They will be sending us photos of the kids using Sarah’s stuff and the leader said “Sarah’s name will be long-remembered” which was wonderful to hear.

After the wheelchairs were removed, Sarah’s bedroom seemed much bigger and emptier and it made me start thinking a little bit about whether there were possible next steps for the room. This is very scary to ponder. From birth to age 9 Sarah slept upstairs in a small bedroom down the hall from us. First in a crib, then in a toddler bed. Around that time, we began to realize that our house needed some changes to make it accessible for her, or we needed to move. She had a power chair, but there was no way to bring it into the house. It stayed at school all the time. She also needed a more accessible bathroom.

We decided to alter and add on to our colonial cube of a house, to build on a first-floor bedroom, and redo the first floor bathroom, and also add a ramped entrance. Projecting ahead, we saw Sarah as a young woman in her 20’s having the freedom to drive her power chair from her bedroom/bathroom suite, out her private entrance and ramp, and up five or six blocks to our town center where she could meet friends or get on the Metro or fulfill whatever plans she had. This was our fantasy. I can’t say she ever wanted to do that much independently but we tried to maximize that possibility.

Sarah’s room is the biggest, sunniest room in the house and it’s mostly filled up with her huge collection of stuffies. I don’t think we could bear to box them up or give them away yet. Her Sleep Safe Bed is still there, of course, and tacked up around it are the pictures and love notes from Danny, Stampy stuff, certificates and awards from school and ballet, and other friend stuff, and art.

Yesterday was a pretty hectic and busy day, with the Zambians coming over, and Max and I packing and assembling stuff for our trip today. In the evening, things had settled down and before bed we were hugging and saying how excited we were about the trip. “But we’re leaving home, you know” said Max.
“It means we have to leave here.” It’s very hard.