Yesterday was wheelchair repair day. We have been waiting for it for over a month. Maggie received a new wheel chair in the summer and it is just not right, Maggie looks like she is sitting in her big brothers hand me down. When you consider the ridiculous price of these things – in the thousands of dollars – it should be right.
Admittedly, Maggie is a tough one to fit for a seat. She needs full support, she does not have any trunk or head control so that has to be part of the package. Maggie is small, but very strong, and she never stops moving. Never. It is part of her disability. She twists and squirms all over the place. Many children with cerebral palsy have similar movements. They are known as athetoid movements. Of course, it is more than that with Maggie. She is a wild child, irrespective of the athetoid cerebral palsy. That means you can’t make a nice custom seat because she will move out of it. So getting the chair right is a work in progress.
The problem with the chair repairs is that they need both the chair and Maggie. She is placed in the chair to see if the alterations will work. Then she is taken out while they do the actual work. Of course, without the wheel chair, we just have to hang out on the mat table. And it takes a couple of hours. The repair place is not far from Steve’s office, maybe four blocks. He suggested we come over, but we could not do it without the wheelchair. I considered rolling her through the streets of San Francisco on a shower chair, but decided that was too weird. Therefore, she lay on the mat table and I sat there making sure she did not fall off. For almost two hours.
Maggie was not interested in her dynavox or the books or anything else. There was a life-sized doll, or at least a Maggie sized doll, near the mat table. It was soft like a rag doll but she had long hair and cool clothes. That kept Maggie entertained for a while. Maggie knotted the dolls hair and tossed her about like a wrestler. If I made “oof” and splat noises when the doll smashed against the table, Maggie laughed. We named her Dolly Lama and spoke of peace and of being in the moment while Maggie tossed her hither and yon.
The chair is improved. Not perfect, but improved. They cut down the back of it and trimmed the sides so she doesn’t look like she is in someone else’s chair. But now her head is so close to the bolts which attach the headrest to the chair that it seems dangerous. We have to figure that out. Even without that issue, there is more to do. But next time they don’t need Maggie. Her chair will go back to the repair shop and Maggie will go to school in her old chair. That one is creaky and held together with duct tape, but it will do the job for a day.
Until the next repair.