For a brief period following the birth of my daughter, I felt an isolation that only a parent of a kid with medical conditions can describe.
A child whose medical condition is a lot more complex than your average sick child.
This was a period of silent suffering when I had to watch with envy as other moms happily breastfed, bottle-fed, or simply fed their babies successfully while I struggled to just keep mine alive.
You’ll often hear parents joking about their children having near-death experiences, but for a mom of a child with a complex medical condition, this is reality.
The divide between moms with healthy children and moms of kids with medical issues is very glaring.
Even our most well-intentioned mommy friends struggle to get across that divide. You’d have to walk in our shoes to know how we feel, but we appreciate your love and concerns.
So, that was 5 years ago, my daughter is all grown up now and my situation has improved.
She got into things that young girls like – gymnastics, soccer, and dance – and my group of mom friends got bigger.
This helped narrow the divide a bit, but I still noticed differences between our daily routines.
My typical day involved visiting doctors and therapists with my kid, often ending with group therapy, while their typical day involved going to work with the knowledge that their kids are safe in school.
I cry a little, worry a lot, and get exhausted throughout the day, but I still sat with my mom friends at the end of the day, comparing our day.
I felt sympathy and love from my group despite the slight divide that still remained.
I found that my groups of casual mom friends were a valuable source of comfort while I raised my second medically complex kid. My closest friends were valuable too, but the friends I made at group functions gave me a sense of normality.
The COVID-19 (coronavirus) pandemic has hit parents of kids with medically complex conditions pretty hard.
Everyone is going through tough times trying to figure out what to do, but for us, there is only one decision.
We’ve had to essentially go into complete lockdown because we are scared of what might happen if our kids get the virus.
Parents of healthy kids can weigh the risks and decide what is acceptable, but we don’t have that luxury.
Lockdown is our new normal until scientists come up with an effective vaccine against the coronavirus.
The first couple of months of the pandemic felt less isolating because we were all in the same boat.
Everyone was in lockdown because no one understood what was going on.
Things are different now, with most people going back to doing things the way it was pre-pandemic.
Children are back in school, soccer, and dance seasons are back. Amusement parks, zoos, and restaurants are opened.
I step outside my door and it’s like life is pretty much back to normal, but as a mom of a kid with a complex medical condition, I am acutely aware that the coronavirus is still out there.
I can’t go out to meet my mom-friends because I’m too scared of bringing the virus back to my kid.
I get groceries delivered to my door, which I thoroughly disinfect before bringing them into the house. I have a strict no visitors policy, which only increases my isolation.
However, this is a sacrifice I have to make for my kid because of COVID-19.
The hopping from doctor to doctor and the helplessness I felt when she cried endlessly, are memories that remind me to do everything I can to protect her.
I can’t go back to feeling the way I felt back then.
And so, my lockdown continues while everyone else seems to be back to normal.
I feel isolated again and that gap between parents of healthy kids and I have widened again.
They get to decide whether to send their children back to school or not or if it’s alright for them to play with other children.
I don’t even have the privilege to worry about making those decisions because I know that answer will be a no for every scenario I can think of.
I have tried to weigh the risks versus the benefits of taking my kid outside our “bunker” for face-to-face therapy sessions.
Meticulously looking for the right date to reschedule surgeries missed because of COVID-19. We are staying put at the moment because hospitals seem to be an epicenter of the pandemic at the moment.
I have to admit I get a little angry when I see videos and photos of you on vacation, wearing no mask, and gathering in large groups with no physical distancing.
I get mad at your selfishness, which mocks my efforts to protect my kid and prolongs my isolation.
It’s like no one cares about what others might be going through during the pandemic. The world has declared a public health emergency, but we live in a time where sticking a middle finger to science and authorities is more important to many people than working together to defeat a common enemy.
So, once again, I find myself sitting in isolation. I feel crushed because this is a return to a feeling that I didn’t want to go back to.
But this is the reality of life when you’re a parent of a child with chronic health issues – you soldier on. The good thing about parents in my situation is that we have built a strong resilience over the past few years.
We’ve learned how to persevere when our world is falling apart. We’ve learned how to make difficult and often unpleasant decisions for the safety of our children.
The COVID-19 pandemic has hit parents of kids with complex medical issues the hardest, but our experiences have prepared us to overcome the situation.
So, I just want to let you know that when your feelings of isolation hit the hardest, you’ve got your own army of supporters cheering you on. We are a community and together, we shall overcome.
Danielle Noble is a fulltime mom of two medically complex kids and avid lover of sewing. She writes about sewing and sewing machines on at Sew Broidery. She enjoys writing about her experiences on various topics.