Our son recently had a neurology appointment, and inevitably the topic of the pandemic came up. I was telling his neurologist that navigating the pandemic as a parent of a medically fragile child hasn’t been easy. For the last two years we’ve had a very small bubble. We only see (vaccinated) immediate family members. All three of my boys are home with me and the two school age ones are doing distance and homebound education. We wear masks and take very few risks. I’ve been told that we’re living in fear, but we have extremely different life experiences than most. We are not the norm.
We’re rare. We live in a world of small percentages. We are the family that other people talk about, you know when you say “it rarely happens, but it happened to them.” That’s us...it happened to us.
Our son, Christopher, was born with a rare metabolic disorder, PMM2-CDG, that affects him from head to toe. He’s medically complex and severely developmentally delayed. Historically it’s never been “just a cold” for him and most viruses land him in the hospital for at least a week. His last illness is one that we’ll never forget and also one that we’d like to never repeat. Watching him seize over and over after multiple intravenous antiepileptics were administered is ingrained in my memory, so are the alarms from his oxygen plummeting time and time again. I won’t forget rushing him to the MRI to rule out a stroke after he lost all movement on one side of his body. I remember the worried faces of his medical team standing at his bedside. I recall when the resident poked her head in his room to tell us that they needed to intubate him, although he looked like he was sleeping, he was still seizing and the medications weren’t stopping them. After he was extubated he still had a long road of recovery, but thankfully returned to his sweet self. Honestly, I’ve never been more terrified of losing our son.
Christopher was in the Pediatric Intensive Care Unit for over two weeks from a virus. A virus that took “worst case scenario” very seriously. This is why I am the way I am. Those memories of crying in the hospital bathroom are why I am the way I am. That’s why I can’t just trust in what will be. I’m not ready to go back there. Our life experiences with Christopher are why we don’t take chances. I can’t honestly tell you how I would react to this pandemic if we didn’t have him; because we do. And we live in a world where it
could does happen. Personally, it’s been so hard to take off the lenses that I look through. The lenses of “it happens.” The world I live in is the world most people see from the outside. I always have a hospital bag packed and ready to go. We have a family plan for when we need to call the paramedics. This is our world. I live in a world where those worst case scenarios actually do happen. We live where illnesses require hospitalization. We live where children get sick from a common virus and leave this earth far too soon. We live where life is a little bit unfair and things that “happen to someone else” happen here.
So, although you may still think we’re living in fear. I’m not. I’m not living in fear, I’m just living in a different world.
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