I don’t remember the first day or moment when the reality of the pandemic finally set in. I don’t remember exactly when my kids stopped going to school. The past 15 months in many ways has been a blur, but today I’m taking time to reflect on disabled parenting during a pandemic.
We are extremely fortunate to have
a pool, which was a complete godsend in the summer. Texas gets extremely hot in the summer and it was wonderful to be able to cool off in the pool with the kids. The pool provided endless hours of entertainment. The kids begin a tradition of roasting marshmallows in the evenings in our fire pit which I think they did almost every week through the whole summer.
We continued our bike rides, our nature walks, and new crafts. I learned that there is a type of knitting called loom knitting that I can actually do with only one arm, so I ended up making the kids a whole bunch of scarves and hats that of course they didn’t need in the summer (I had no way of knowing they would
need them in the winter of 2021). One of the hardest things for our family was that we were not able to visit my grandmother, the kids great grandmother whom they call GG, except through glass. The loss of touch was particularly difficult for her because both her hearing and her vision are impaired. I know she still enjoyed those visits. Our youngest graduated from pr
eschool — outside, socially distanced, with a vehicle parade. She hadn’t actually attended in months.
I continued to work full-time so a lot of the caregiving and supervision fell to my partner who had to sacrifice his work. Much of my professional and personal energy was sucked up by watching people with disabilities be de-prioritized and denied equal treatment for COVID-19. It made everything that much scarier. If I contracted COVID and had to go into the hospital, would the doctors find my life as a triple amputee worth
living? Would they know that I am the mother of two young children and that I matter to them? That I’m a wife, a daughter? We lost so many disabled brothers and sisters, disproportionately, to COVID. This was one of the scariest times in my life as a disabled person and parent.
By September 2020, our family was starting a new school year totally virtually. All four of us were at home all the time and as much as we love each other, we have also gotten quite sick of each other. We resumed outdoor activities like soccer and baseball. I learned that if you have a wonderful, talented, caring teacher, even Kindergarten can
be successful on Zoom. We discovered a new science show called Emily‘s Wonder Lab and had a great time making slime. Somehow the number of streaming services we subscribe to seemed to double. We visited the local STEM museum – we had to sign up in advance and be very careful about socially distancing. So many things that used to feel normal became a novelty, like the first haircut and finally getting back in at the dentist. We had a fantastic neighborhood Halloween costume party that was extra special for the kids because they had been isolated for so many months.
On January 4, I received my first dose of the Moderna COVID vaccine, because I am a healthcare worker. My husband would not get his until March 2021. Slowly but surely, all of the elders in our family and those with chronic medical conditions received the vaccine. We’ve been able to visit grandparents again and finally hug and kiss (masked) GG. Just when it seem we were turning a corner, Texas was hit with the snowpocalypse in February. We were one of the many families who experienced intermittent rolling power outages. It was freezing cold and we were not able to go anywhere because the roads were not suitable for traveling. We didn’t have water and we had to get really creative to stay warm and to stay busy. The kids enjoyed using candles in the house, which was a big point of fascination. My husband used a power adapter to rig his truck to provide electricity for a few high priority things in the house. I wasn’t able to charge my power wheelchair for a several days, but it wasn’t like I was going very far with it so the charge lasted. All that pandemic knitting finally came in handy! All in all, we were very lucky. Many people died as a result of the snowstorm and freezing temperatures.
At long last, we
decided to send our kids back to school in person in April. There seems to be so much controversy about parents’ choices about that, but everyone should be so fortunate to be able to do what is right for their family. And many people don’t get choices. Although life is more normal now, we know this pandemic is not behind us. We’re still wearing masks pretty much everywhere, washing our hands like crazy, and social distancing. Interdependence was also a major theme for us. I could not have done it alone, and I relied on my spouse as well as other family members, even if they could read a story to the kids over video conferencing. My mom shared many ideas and supplies for the crafts and projects we undertook during quarantine. It was nice to be able to have her drop off some craft in our mailbox, even though it wasn’t the same sense of connection we took for granted pre-pandemic. Disabled parenting during the pandemic requires a lot of creativity end determination. Luckily, living with a disability has probably helped you to fine tune those skills. How are you parenting during the pandemic?