A few years back my family was recommended to a world-renowned doctor at the Cincinnati Children’s Hospital. We were planning for neurosurgery that, if successful, would permanently reduce the spasticity or stiffness in my son’s left leg. Studies show that, long term, this would improve his mobility outcomes and hopefully reduce or eliminate the need for later surgeries to elongate muscles that were likely to become contracted over time. Easy to talk about and explain in terms of medical benefits and statistically-backed positive outcomes, but emotionally daunting to say the least for my wife and me. As we prepared to depart, we knew we were decided on the surgery and committed, but we simply had to swallow our fears and live with the risks because, like any surgery, there were no guarantees.
After we arrived and got settled in a nearby hotel (that was kind enough to have a special rate for extended stays involving children who were patients), we attended our pre-surgery day visits at the hospital. You get inundated with paperwork and explanations, and they reinforced that my son would not leave the hospital for at least five days post-surgery. My wife and I started planning our overnight schedule at the hospital, alternating between hotel nights of respectable rest and hospital nights comforting my son with absolutely no rest. Suffice to say, we were pretty self-absorbed in the whole process and desperately working to stay upbeat around our son while we managed our internal trepidation. This was the last situation I ever thought would provide me some needed perspective. Children’s Hospitals have a way of doing that.
His surgery went very well, thank God. And after the deepest of exhales, we settled into the hard work of making his five post-surgery days in the hospital as good as possible under the circumstances. That’s when I first noticed the boy next door. At first I thought someone was upset, almost constantly yelling, in the room right next to my son’s. In the late evenings, when the hospital was relatively quiet, the loud noises became clearer. Nobody was yelling; it dawned on me that, instead, it was a child with a significant condition where he yelled out uncontrollably. Perhaps it was a child with Tourette syndrome, or another condition. I never found out, but the experience pulled me out of being so singularly focused on everything in my son’s room. That was where I needed to be focused, of course, but I became more aware of the family next door, the rhythms of the staff and night nurses and everything else happening beyond our room.
In the last three days we were in the hospital, I especially noticed the parents of the boy next door, coming and going. They didn’t appear upset, or at wit’s end – as I imagined I might be in their position. They were simply managing their family’s challenge as well as they could. I developed a real appreciation for them, as my wife and I both acknowledged we weren’t sure if we’d cope as well. I also developed a greater admiration for how the nurses and other staff, working in challenging and fatiguing conditions, kept an incredibly positive demeanor around the kids. It was really inspirational to see. I don’t think I’m good enough to do that job, and I’m sure for many of them it was much more than a job.
When we were discharged, I departed with a strange feeling about the Children’s Hospital. While I wished we never had to go there in the first place, I gained a great deal of necessary perspective about what so many families and caregivers deal with and overcome. In a way, I felt like we had it easy and, against all my instincts, I appreciated having been there and the valuable dose of serious perspective it gave me. I got my first real look at the massive spectrum of challenges that families of children with special needs have to manage. Sometimes perspective is priceless.
– CP Dad
Read the next post in this series here!