It was a much better day today than yesterday. it started in the morning, when Jorge told me that the group coming from Abancay was arriving a bit late. After the long day yesterday, even a few minutes to linger over a morning coffee was very welcome. The group from Abancay left in a large van at 3:00 am to be at our clinic. The things that parents will do for their children.
To my mind, there were two very memorable children today. Elmer is a young man who has just graduated from “secondaria”, the Peruvian equivalent of our high school. He is a very personable, very determined, very independent young man. He cannot control his limbs so they are apt to fly out at any second. Since he is so socially aware, he really wanted to have us help him control his legs in particular. He is very verbal and apparently does a lot of advocacy work for people with disabilities in Peru. His wheelchair was one where we did a lot of modifications meet his needs. He wanted a fairly low base so he could move himself to the ground. He used his armrests a lot to help move himself in and out of the chair; those that came with the chair were not strong enough. So Scott, our resident wheelchair hardware wizard, fabricated unusual armrests out of four unused back canes. The other problem that Elmer identified for us was that the twitching in his legs meant that he would injure himself on any metal surface, and specifically in the area of his knees. So Pam, the therapist working on his chair, and Scott devised pads on the wheelchair to protect his knees. They also did other things that Elmer specifically asked for. In the end it was an unusual wheelchair, but totally functional for Elmer. The most amazing thing was Elmer’s final test for the chair. Painstakingly, with arms and legs flailing about, he undid his seatbelt and foot holders, lowered himself to the cement floor, then pulled himself back up into the chair, and redid all the buckles. It was hard to watch – I wanted so much to help him, but his independent spirit was so strong that I knew I would hinder rather than help. What an example to the other children and parents there!
The second memorable child was Lillibeth. Hers was the last wheelchair finished for the day. As usual that also meant that it was one of the most complex. Lillibeth is a very cute nine year old girl who has a lot of spasticity. Her mom and a cousin were with her. Because of her spasticity, her chair needed to tilt in space, and a lot of adaptations very specific to her needs. Kim, the lead therapist on this chair told me afterwards that twenty different people had helped in some way with the chair. There were so many adaptations that it would bore you to list them all. Suffice it to say that it was a real work of art.
It is late, and the twelve hour days are getting to us all. But the parents of these kids have much longer days than that, with travel.