by Jenna Pashley Smith
I’m a mom to two kids aged six and eight. My disability is largely invisible: I’ve had rheumatoid arthritis for twenty years and racked up various joint damages. My limitations change by the day: some days I feel relatively able, others I can barely walk. The unpredictability of this disease has been a challenge for my parenting from the very beginning. But as a result, this is also the only mom they’ve ever known, a mom who winces when they reach for my hand, but also one who can sometimes turn crooked cartwheels with them. Other days, I’m the mom who limps around the house with a cherry red walker.
Being asked to stay home during the COVID-19 crisis has not been the horror I thought it would be. This disease flares up for me more under certain conditions. The normal suburban lifestyle in our area-overextended and extremely active-kept me on a constant rollercoaster of energy drains and physical strain. The permanent damage in my wrists, fingers, and an elbow mean that even driving is uncomfortable on my best days. And a good day could turn bad in a hurry. My children haven’t visited the zoo more than a handful of times, even though our city has a fantastic one. The 45 minute drive, plus miles of walking, means that I’m completely trashed before we’ve finished visiting the elephants! So they miss out on things because of me. I try not to feel guilty about that. But when everything is closed, I don’t have to feel guilty at all!
At home, I don’t have to push to keep up with the myriad activities of school and friendships and activities that used to make up our daily grind. I’ve always managed by juggling the day’s symptoms and adjusting on the fly. When I pushed too hard, I’d cancel all plans and spend a few days in bed, recovering. Our friends never really saw me on bad days, so I don’t know how many people actually really understand the degree to which this disease impacts my life. The pressure to participate or go out was always high in our social circles. It’s a relief to not have any of that now. I don’t have to worry about hurting anyone’s feelings by declining invitations. Instead, we garden. We take our books outside and read in the gorgeous spring weather. The kids have been kicking soccer balls around and practicing their handstands. I offer encouragement from the sidelines and nap when I need to.
My kids are pretty aware of when I need help, especially my daughter. She’ll give me a shoulder massage or rub my hands. I’ve been the recipient of many naptime “facials” complete with abstract makeup and intriguing hairstyles! My son has become a voracious reader, and he likes nothing better than to cuddle up with a fat book. That’s an activity I can always participate in!
At the beginning, I couldn’t rest at all. My anxiety was hammering away at any shred of calm I found. I didn’t know if I could trust my kids to stay home, so I was on high alert all the time. We live in a close-knit neighborhood surrounded by families with kids all the same age. The children have a 1980’s sort of existence, bouncing from house to house as they play all afternoon, sometimes all day on the weekends. Isolation was extra necessary as the neighbor affectionately known as “Everybody’s Grandma” and I were both high-risk individuals.
My inflammation got really bad during those first weeks. I was having difficulty using my hands and I was fearful of using some of the medication options at my disposal because my husband was (at the time), still having to go into the office every day. Halfway through our “quarantine” he was furloughed to half-time. It’s not ideal from a financial sense, but at least we still have health insurance, and the week off is a welcome relief for the whole family.
Once we found a rhythm for our weeks, my symptoms got better. I took care of myself in the small ways I could. And letting go of anxiety through breathing exercises, diving into my writing, and limiting social media really helped. In our “old” life, we realized between school and activities, we only really spent time together as a family for a few hours every day. The quality time with my family has been amazing. It’s allowed my husband and I to get to know our children in a new way.
One thing I’ve noticed during quarantine is that my physical limitations have forced my kids to grow up differently than their peers. Other parents I’ve talked to are carefully curating what their kids hear and learn about the pandemic (and life in general). Not my kids. I keep it age-appropriate, but we haven’t ever tried to shield them from the realities of pain and suffering. I don’t actually want them to have a rosy, innocent outlook. I want them to recognize that pain is part of life. Not ideal, but real. They need to see that pain isn’t to be avoided, but to be faced, whether it’s a scraped elbow, a knee swollen like a cauliflower, or grief. Pain is a signal, but until it’s faced, you’ll have no idea if the signal means “stop!” or “keep going!”
When we talk about staying home, even my extremely extroverted daughter understands that it’s to keep people safe. People like mama. And even if they’re sad about missing their friends, the sacrifice is worth it. They’re not complaining about fairness, because the world isn’t fair. Instead, they pray for the “germs to die” and for all the people working tirelessly in hospitals and grocery stores. Living with me and my disease, they’ve learned a compassion and empathy that gives me hope for the world they’ll be part of rebuilding. They keep going. And so do I.