October 15, 2017 marked exactly two weeks since the fall that led to the ambulance ride to the local hospital for stitches and resulted in the transfer to Columbia’s Neuro-Intensive Unit for a life-saving shunt surgery.
In those two weeks, G, H, and I were forced to develop new routines at home without Matt. Our old life—the normal life—was still spinning while Matt was at Kessler and we had to adjust. Bedtime story arrangements needed to be reorganized and Saturday morning chocolate chip pancakes needed to be restructured to adjust to one less plate.
G and H still needed normal–or at least something closely resembling normal. I tried to strike a balance, hoping to give G and H normalcy without normalizing living like a family of three.
While Matt’s sister visited him during the day, I filled G’s and H’s calendar with all the Fall outdoor activities we hadn’t had a chance to do. In the morning, we went apple picking and found empty McIntosh trees at the orchard—we were, apparently, a little late in the season for those particular apples. In the afternoon, we went to Fall Fest at G’s and H’s summer camp. They decorated pumpkins, painted their faces, played with the chicks at the petting zoo. We ended the day with Matt.
He was having a difficult day, aggravated and annoyed at being cooped up all day. No one could blame him. He hadn’t breathed fresh air in two weeks. He was forced to shower on the nurses’ schedule. He was sick of the food and the walls and the feel of Kessler. He wanted to go out to a restaurant for dinner. I asked the administrative staff if we could go out—with the wheel chair—and they told me no. Due to liability issues, they could not release Matt; he hadn’t even proven he could stand from the bed consistently without help, yet.
Matt blamed me, for their denial and for the length of his extended stay at Kessler. A part of me agreed that the blame was mine to bear. After all, when the physical therapists at Columbia had assessed Matt’s strength and balance and recommended Kessler, I hadn’t refused. I’d agreed to an acute in-patient rehabilitation center. Everyone (the doctors and Matt’s parents) had been on board with the idea, but ultimately it was my choice. Had I made the best decision for Matt or had something else influenced my decision? Had I been influenced by the fear that I wouldn’t be able to care for him when the brunt of the responsibility was on me rather than a nursing staff?
In hindsight, I am sure in-patient care was the right choice for Matt. The twenty-four hour care and intensive therapies gave him back some of the pieces of himself he’d lost to headaches and seizures and emergency surgeries. But also, in hindsight, I can admit that my decision was influenced by fear. I was terrified that Matt would fall again, and I would, again, not be able to catch him, that we’d continue the cycle of ER visits, hospital stays, and discharges we’d been stuck in since September.
In hindsight, I know I made the right choice for Matt. He got back some of himself before the next down cycle and that was a gift for all of us (him, me, G, and H). I wish I could say the decision, right as it may have been, was not stained by fear, but it was.
In the coming weeks and months, we (I) would be faced with more decisions, some of which were simply impossible, many of which were influenced by fear, all of which were made with a heart full of love and hope. And that’s the truth I hope G and H always remember.