My Son is NOT a Widget

J2My son was just treated as a widget, something unspecified whose name is either forgotten or not known.

My eleven-almost-twelve year old son needs 24-hour care and supervision. He can never be left alone. Ever. His life depends on it because of his breathing and swallowing issues. We have nurses who remain awake in his room at night while he sleeps to ensure he is safe, that he is given medication and food via his g-tube at pre-determined times and that his position is changed as required.

Most of the nursing expenses are covered by the government, and I am very grateful for this (it wasn’t easy to get, but that’s an entirely different story covered in depth in my book: The Boy Who Can: The Jacob Trossman Story). For the most part, we have had qualified, reliable and trustworthy nurses over the years and have been fortunate to have established many long term relationships with these professional caregivers.

Due to her own medical issues, one of our regular nurses has been recovering from surgery for the past few months and her bi-weekly (every other Saturday night) shift has been covered by several of her colleagues. But, this weekend’s shift proved problematic and a second nursing agency was asked to step in and provide a suitable replacement.

That’s where the widget analogy comes in.

I was told that the “shift has been filled” by a nurse named Nancy. “Phew,” I thought, “no all-nighter required this week,” but then I asked a few questions. My first question was whether Nancy has ever worked with Jacob (we sometimes have so many nurses that it’s hard to keep track and her name did not sound familiar). I was told that she had not. I then asked if she had any pediatric experience and was informed by the “service rep” (and I use this term loosely) that she wasn’t sure as she did not know Nancy. I then asked why she thought Nancy would be a suitable nurse for Jacob, to which she replied: “I received a call informing me of an open shift needing to be filled, so I filled it.”

As I sit here and type, my hands are still shaking. I’m not sure if my visceral reaction is because I’m anxious about having to stay awake at night and care for Jacob, while needing to be functional during the day for all my kids the day before and after the night shift. Or maybe it’s because I’m heartsick that my son was treated with such blatant disrespect. He is a person and deserves to be recognized as more than a widget. Or maybe it’s because I’m forced to confront, yet again, the fact that his medical condition is so precarious that I am so dependent on the help of others. The reality is that it is probably a combination of all of the above.

Nevertheless, I will ensure that my son has the best care he needs. And if it means I sacrifice some sleep in the process, so be it. I’d much rather know that he is well looked after and not simply “a shift that needs to be filled”.

I’m going to make some coffee now. I think I am going to need it.