A few weeks ago, though, I signed up with our local homeschool co-op and began researching curriculums for next year.
My daughter was diagnosed with Juvenile Idiopathic Arthritis (JIA) when she was four years old. The diagnosis came after several scary months of ER visits and invasive tests. JIA was actually the least terrifying possibility that had been presented to us as an explanation for her symptoms—I had been told to prepare myself for everything from brain tumors to leukemia and multiple sclerosis along the way.
As a single mom, those months were the hardest of my parenting journey. Until now.
JIA is an autoimmune condition where the immune system attacks a child’s joints. Prior to diagnosis, my little girl had been limping, struggling to get up stairs, and dealing with a hand and wrist that were becoming increasingly non-functional.
Once we knew what was causing the problem, she was put on a weekly regimen of a chemo medication meant to calm down her overactive immune system. I give her the injections at home and she’s generally a champ about it. The medication gives her headaches and sometimes makes her Sundays a little rough (she gets her shots on Saturday nights). But this treatment protocol halted the progression of her disease and allowed her to get back to running and playing like she had prior to getting sick.
For that reason alone, it was a miracle to me.
Of course, there were other complications to consider. The combination of her diagnosis and the required treatment rendered her immunocompromised. And at first, that really scared me. But as we got used to this new normal, I realized it mostly just meant that when she did get sick, she typically had to fight whatever illness it was off longer than other kids her age might. I learned it was best for us to see the doctor early and often when she started getting ill, and to let her have as much time as she needed to rest and relax as her body fought off various infections.
For the most part, over the course of three years on this treatment protocol, we got lucky—while she battled several illnesses, none ever got so bad that they warranted hospitalization. I learned to take a reasoned approach, allowing her to live her life without fear of germs, only forcing her to slow down when illness seemed imminent.
Then COVID-19 happened.
As part of her treatment protocol, my daughter is required to get bloodwork done every three months. Her last appointment was March 13th, the day after the first case of COVID-19 was announced here in Alaska.
The office was empty. Her doctor told me people had been canceling appointments all day. We weren’t wearing masks yet—at that point, public health officials were still advising against doing so. But my daughter’s doctor was very clear in her advice as we left the office that day:
“Keep her in a bubble if you can,” she said. “Complete lockdown until we know more.”
I was resistant at first. It had taken me a long time to get to a point of not living in fear for my daughter’s safety every single day, but I’d gotten there. I’d worked hard to let go of my worries and let her have a normal childhood, despite her condition and the medication required to treat it.
But now I was being told to keep her inside and away from other people? For a period of time that was still completely unknown?
It seemed impossible. I’m a single, working mother. My daughter is an only child. We have no family nearby, but a very close group of friends who have served as our support system for years. How were we supposed to go forward without seeing them? Without being with them?
How was I supposed to go forward without any help at all?
It took me a hot second to come around to accepting the doctor’s advice. And I did so only because I truly trust her. She’s always been reasonable and has never fallen on the side of fear before. She’s always supported my desire to give my daughter as normal a childhood as possible.
If she was advising extreme caution now, there was a reason.
So one day at a time, we embarked on lockdown. I ordered all my groceries to be delivered to my doorstep, wiping items down before bringing them inside. We didn’t go to restaurants, or even order takeout. We took our dogs on remote hikes where we didn’t have to worry about running into anyone else. I handled my daughter’s education, and my workload, by basically giving up on sleep entirely. And my little girl learned how to entertain herself for hours a time.
She actually handled it all pretty damn well. I was the one who was struggling, eventually having to reach out to my own doctor for a prescription to help me overcome the depression and anxiety I was experiencing.
The hardest thing for me was not knowing when this might end. I missed my people. I missed our support system. I missed having time to myself.
But most of all, I missed not having to fear for my daughter’s life every time we stepped outside.
After 10 weeks of lockdown, I followed up with my daughter’s doctor again, hoping something might have changed. Instead she said, “Leah, if you could keep her in a bubble for the next year, that is what I would tell you to do.”
My heart broke a little during that call. Especially when she suggested I plan on homeschooling my daughter next year, even if schools open as normal.
It was the answer I had been dreading. But it’s also one I had been preparing myself for.
I have friends in my timeline arguing for schools to reopen as normal. “Our kids deserve to live a normal life,” they say.
I have to bite my tongue and fight the urge to write back, “My kid deserves to live.”
I know none of this is their fault. I know they aren’t responsible for the fact that my daughter is at greater risk.
But I wish more people understood the reason restrictions are being put into place is to protect people like my little girl. The ten million people in this country who are also immunocompromised. The over 55 million who qualify as elderly.
That’s nearly 25 percent of our population at risk of dying or developing serious complications from COVID-19. And yet, while I’m planning on working full time while also homeschooling my child and doing whatever I can to keep her safe, people are complaining about wearing masks. Or having reduced school hours. They’re complaining about kids being encouraged to maintain safe distances while they play and proper handwashing techniques being enforced.
“Our kids shouldn’t have to live in fear,” they say.
And I agree. But the thing is, our kids shouldn’t have to watch their friends and loved ones die either. This actually is something worth fearing. And denying it doesn’t make it go away.
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