The Isolation of Parenting Medically Complex Kids During the Pandemic

There was a time period after my daughter was born when I felt the isolation that comes from parenting a child with health conditions. That comes from having a kid that is more complex than others. It was a time when I watched other parents happily breastfeeding, formula feeding, or just successfully feeding in general while I stood in the distance just trying to keep my child alive. People joke about keeping their kids alive, but for a parent with a medically complex child, it’s not a joke. It’s life.

There is often a divide between parents of healthy children and parents of children with health concerns. Even well-meaning mom friends can’t cross that divide, because you never have to walk in our shoes, although we do appreciate you peering in to ask if we are OK.

Eventually, my daughter grew up and things got a little easier. The divide closed a bit as she was able to join dance,  gymnastics, and Girl Scouts and my mom group grew. But it wasn’t like they were close friends, and our days didn’t look anything alike. I spent my days driving my kids to doctors and therapies and ended with group activities. They spent their days at work while their kids were in school and then took care of the functional duties. My entire day was functional duties. But still, at the end of the day, I sat there and chatted with those moms and we complained and compared days together. There was still a slight divide, but I was able to sit there and commiserate among others.

All those casual groups we were able to fall into over time made it easier when I had my second medically complex child. I had some close friends who offered me the much-needed support, but I had casual friends at normal functions that made me feel normal (-ish).

That is why the coronavirus pandemic is hitting the parents of medically complex kids so far. We are all struggling to make the right decisions, but for us, the decisions are already made. Other parents get to decide about acceptable risk levels, while we effectively shut the door on normal lives.

For a few months, it was OK, because everyone was shut inside the door with us. We all complained together, but now kids are going back to school. Dance and gymnastics have started again. Fall sports are in full swing. Zoos and museums are open. If you look outside it almost looks normal, but we know it’s not.

We have sat in hospital rooms unsure of what tomorrow would bring. We know how it feels to have a sick child who screams and cries, and how it feels to know you can do nothing to stop it. We also know we would do anything to prevent ever feeling that again.

And so we sit in one place. The world is moving on again, and we sit in one place. We are isolated once again and the divide between us and those other parents grows again.

We haven’t spent the last three months deciding whether or not to send the kids back. About whether or not it’s acceptable to play with the kids down the street. We know those are firm nos. In fact, it’s a privilege to even have those things be your big concern.

We have spent our last three months attempting to weigh the benefits of in-person therapy versus the risks. Carefully calculating the best time to reschedule missed surgeries because of the pandemic. Determining when to get all of our specialists in so we can hide during the next wave.

And places we have begun to feel secure in — hospitals and clinics — are now the epicenter of the pandemic and the one place you want to avoid at all costs. Which is hard to do if you have two medically complex children and a host of appointments.

Our priorities are different and we feel it every single time we see a picture of your vacation or unmasked gathering. The things you are doing are making a mockery of our efforts to keep our kids alive and make it clear that inclusion was actually never anyone’s priority. Because in a public health crisis the world prefers to ignore its most vulnerable.

So here we sit isolated again. For me, it’s crushing because I have been here before and thought I had overcome it. But that is life with a child with chronic health difficulties — you never overcome it. The calm can be more frightening than the flare because you are waiting for the other shoe to drop. The good news for parents like us is that one talent we have developed over the years is resilience. We know how to stand tall when the world is crumbling. We know how to make difficult decisions that seem to have no good answers. And we know how to stand apart for the sake of our children.

The pandemic may be hitting parents of children with chronic conditions harder than others, but we have the toolkit to rise above. So on those days when that feeling of isolation hits, remember there are thousands of us across the country cheering alongside you.