One part of having a medically fragile child I struggle with is the constant anxiety of her catching an illness, and the havoc it will have on her body. Having a brain injury can make it very difficult for the body to interpret illness or how to properly respond to it. That’s why the idea of a pandemic could be particularly stressful for a special needs parent.
When it comes to your average cold and flu season, I find myself in a constant state of running the odds-on risk/reward for pretty much everything. I may take a trip to the zoo which has large groups of people but is an open-air environment. The threat level feels lower. I may however, avoid other children’s birthday parties which can sometimes present itself as a germ factory when small children are involved.
With the growing numbers of COVID-19 cases it feels like the world is closing in on us.
I do everything I can to mitigate risk, but it’s not unusual for us to need hospital attention for extended periods of times throughout the year. I’ve always felt so confident about the care in our local hospitals, but in the current health crisis it no longer feels like the safe place it had once been.
I have been criticized in the past for the level of paranoia common illnesses bring me. I struggle to internalize fears, so I always seem to wear my heart on my sleeve about things. She contracted a common stomach bug, and it landed us in the hospital for two months. It resulted in two procedures that required general anaesthesia and a central line. We were told her organs may never fully recover from it. A typical child would probably recover without medical intervention within 48 hours.
She also has weak throat muscles that can make keeping her lungs clear an issue. Her aspirating is a constant concern of ours, and even on good days she struggles to handle secretions. It makes the idea of a virus that can have such impact on otherwise healthy people terrifying.
I find myself getting frustrated with others that have less concern about this. I hear statistics on the probable 97% survival rate. This means very little to a family that has been in the “3%” on multiple occasions. Only 1 in 200,000 mothers will experience a placental abruption yearly, only 1.5 in 1,000 live births will experience HIE, only 16% of babies with moderate/severe HIE will develop epilepsy, and I think you catch my drift. I’m just not one that is comforted by statistics.
I have tried to refocus my energy on things I can control in this situation.
Practicing social distancing, and also allowing my family to take this time to refocus on each other. I’ve also begun FaceTime therapy sessions to remain productive throughout this. This whole situation has been an emotional roller coaster for typical and special needs families alike.
I hope we will soon see the light at the end of this. I hope people outside the special needs community get a broader perspective on how isolating it is to live in fear of an invisible threat. I’m working hard to recognize the silver linings in things. I hope we will walk away from this more connected than ever.