I want to write a little bit about donations. I am prompted because a mom who I haven't heard from in a couple years stopped by my office recently and made a donation of equipment that her son used. He died a couple years ago, and the mom (in her words) was able to finally sift through some things in the basement and decided that the therapist would make good use of the items with other children and families.
I can't write about this particular situation yet because to be honest it is too raw and too recent.
Instead I want to write about The Billy Williams Chair. I can write about this chair now without crying, mostly.
Billy had a full 18 year old life before I ever met him for his final year or so. He was a high school student, a singer in the chorus, a big brother, and so much more. Unfortunately, when I met him he was stuck in a hospital bed in a pediatric intensive care unit for most of his time. Billy had transposition of the great arteries, which means that the important vessels in his heart were connected to the wrong places. He had surgery to correct this as an infant, but he had long term complications including pulmonary hypertension that contributed to congestive heart failure. He had a few surgeries over time to help his failing heart, each complicating his condition more and more until he was at the point when I met him. He had a permanent tracheostomy and could not tolerate a Passy-Muir valve so all of our communication was through signing or lip reading or writing or wild gesticulation. It was really frustrating for Billy, and I think it was especially hurtful because he loved to sing.
Multiple surgeries and the need for long term mechanical ventilation kept him bedbound. Poor fluid balance complicated his mobility and range of motion and physical activity - which of course cyclically impacted his fluid balance. The ICU team was incredible in all that it did to manage the complexity of his medical condition - and although I am no expert in such matters it is difficult to imagine that they could have tried harder.
OT and PT were integral team members in the pediatric ICU, and we saw Billy on a daily basis to help him move to whatever his tolerance was, to have him sit up, to have him participate in simple self care activities. Every day we interacted with his mom or dad, and we frequently saw his little brother and sister as well. They were just an incredible family, and they were trying to cope with the most impossible of situations. So many things went wrong because of the medical complexity of his situation - and I just don't remember them complaining. They were the most supportive family I have ever met.
Humor abounded and there was an amazing bond between Billy and his mom. I especially remember the time that his mom made a sign that said "Mulder and Scully! I am in here! Please get me out!" Perhaps the only way to make sense of his impossible situation was to imagine that he was an X-Files case.
I have written before about the futility of working with children who are terminally ill. Billy was terminally ill, but no one really said that out loud. Or maybe they did, and I wasn't listening. It was a hard situation. The doctors kept pushing to fix things, because that is what doctors do. We did the things that the doctors told us to do, because it was a hospital and that's how things work. The ICU team wanted us to maintain Billy's range and mobility throughout all these medical trials - but it was a losing battle. In particular, fluid retention and long term bedrest was causing contractures of the hamstrings so they asked us to use dynasplints which did not work and then progressive serial casting. After one cast application I got a beeper call after hours because Billy just couldn't tolerate the stretch from the cast and it had to be removed. It was all just matter of fact to Billy - but I will never forget the way that he told me with his eyes that the cast was not comfortable and he just couldn't take it any more. That night I removed the cast, and then sat with him for an hour watching The Incredible Mr. Limpet. I couldn't think of any other way to make sense of the therapy at 10pm than to sit with him and watch TV and laugh a little into the lonely night of the ICU.
Somewhere along the way we got Billy a wheelchair. It was a monstrosity of a wheelchair because it needed to have elevating removable legrests, a solid seat, a solid and reclining back, and room underneath it for a portable ventilator. It may have been the bulkiest wheelchair I have ever worked with, but it met his need, and got him out of the bed at least a little. I think he hated it, or maybe he just hated that we were coming down and trying to drag his very frail body out of bed a couple times a day. It was probably all just part of the X-Files to him - more equipment that looked more like it belonged on an alien spaceship that he was being poked and prodded and strapped into.
I don't precisely remember the day when Billy died, but I remember writing the discharge note in matter-of-fact medical terms that grated against every sense of moral order that was in my brain. I remember his wake vividly though - with the Phantom of the Opera music that he loved so much playing in the background and the wonderful picture boards. I especially loved the picture of him with Vulcan ears on when he was younger. It was priceless. I mourned for Billy, and mourned that I did not know the Billy who got to smile like that and wear Vulcan ears and sing. I never heard his singing voice.
I mentioned that his family was amazing, and they were amazing to the point that I can't even explain my feelings. I have no doubt whatsoever that his younger brother and sister have grown into amazing young adults - because that is just the way that family was. Billy's mom donated his wheelchair to the therapy department and we used it many times with other adolescents who needed that kind of large and bulky and heavy duty wheelchair that could accomodate a portable ventilator. The family placed a simple placard on the back of the headrest that said, "In loving memory of Billy Williams." The headrest was curved and the placard was somewhat stiff with an adhesive back. Every time I saw that placard I pushed on it hard to make it adhere better to that chair so it would never come off.
The chair became known throughout the hospital as "The Billy Williams Chair." It was something that the PT and I initially used to describe the chair, and it pleased me immensely to be sitting in a planning meeting and to hear a floor nurse say, "Do you think that we could use The Billy Williams Chair for this child?"
I left that position over ten years ago now, and I doubt that the chair is still being used. I doubt even more that the stiff placard stayed on that curved headrest. More importantly though, I think it is a good time for me to talk about The Billy Williams Chair so that families know that when something gets donated it really does get used - and even when something is done being used and even when the adhesive is off of the memorial placard - that the memory of amazing people like Billy and his family is stuck in my mind forever.