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Bright by Text Response to COVID-19: Free Community Partnerships through 2020
How Our Daughter’s Diagnosis Has Helped Me Cope During the Pandemic
By Megan Nix, CMV Advocate and Soon-to-be Mom of 4
Having a child with special needs can feel like a totally different parenting experience than raising typical kids. When our second daughter, Anna, was diagnosed with a disease called congenital cytomegalovirus, or CMV, I immediately felt like my entire understanding of motherhood had shifted. I learned that CMV is a common virus, but if you catch it while pregnant and it crosses the placenta, it can impact every system in a developing fetus. I learned that
means “from birth.” I learned that my seemingly typical pregnancy and my healthy medical history did not exempt me from having a child with lifelong challenges.
When Anna was one month old, we received the news that she was completely deaf, would have gross motor delays, and potentially vision loss, epilepsy, and a host of other issues. All that we’d taken for granted had been reorganized into unanswerable questions by a virus we had never known.
The world is facing a similarly shaken feeling today, in the wake of COVID-19. It has upended much of our collective stability and forced us into a “new normal,” which isn’t so acceptable as the term can sound. And if you have a child with special needs, these additional layers of isolation, confusion, and unceasing parenting can feel especially heavy.
While Anna is now five, hears through cochlear implants, and has caught up on many of the delays she had when she was a toddler, we still feel acutely affected by the pandemic because of her vulnerabilities. It became clear to us, early this spring, when I first ordered our family cloth masks, that she couldn’t make out speech half as well or lip-read at all behind the thick squares of fabric. With her low-muscle tone and prior hospitalizations for things like RSV (another common virus), we didn’t know how well her immune system would hold up to an infectious respiratory illness even if it was only mildly affecting most kids. And when her pre-kindergarten class switched to online learning, we saw her fail to engage in the barrage of multiple people speaking or signing at once.
For me, this all translated into more anxiety than I’d had since her diagnosis five years ago. I felt that every question led to more questions, just when we had reached a point that she was loving school and falling into a groove with her peers. I found myself reverting to the ways I had first survived her diagnosis—and, realizing that these coping skills are just as necessary for me now (and will, hopefully, be helpful for some of you), as the world adjusts to the changes of another widespread infectious disease. Here are the three things I continue to do to make our family’s wellbeing a priority over the uncertainty that can easily overwhelm me:
: While Anna’s online therapies continued after the closure of schools, I realized that some of them were bringing more stress to our lives than they were any noticeable benefit. I tend to become the queen of cancellations in the midst of stress, and this meant drastically reducing the amount of time we Zoomed. Some days, we had seven or eight Zoom sessions in our house between my husband’s work, both families, my CMV advocacy work, and homeschool/therapies. Plus, we now had a two-year old who liked to climb all over the table any time she heard the computer turn on. I full-blown discontinued one therapy that didn’t seem to be moving us forward. And when friends wanted to have a “Zoom happy hour,” with our kids, I said, “sorry, we’re all Zoomed out.” Other ways I reduced that have worked for our family: we’ve ordered more takeout in the last six months than ever in our lives. I don’t do elaborate crafts—or even entertain the idea of Pinteresting colorful, complicated things—with my kids. They play outside, they fight, they play again better the next time, and I allow them to watch a movie every day so I can keep my sanity.
: Usually, I try to do everything myself. But this summer, while my husband’s business was faltering, we sold our house and moved into a new one. And…I am five months pregnant with our fourth. I needed some help. When friends asked if there was anything they could do, I figured out contactless favors that would truly help me and honor their ongoing offers: they brought things to the post office I needed to mail; they grabbed a few extra groceries for me and left them on our porch. Also, instead of using social media to feel connected, I deleted the Facebook app on my phone and relied on my most trusted Deaf friends and CMV moms. I didn’t apologize to myself or to these friends, for failing to do what is expected of me, which often feels like too much for all of us. We should expect to be helped. We should expect to help others when we can. To refuse this cycle of generosity is to deprive our communities and ourselves.
: I know that I haven’t been the best mom in the last few months. I’m often on edge, I’m tired of my—wonderful, beautiful, and amazing—kids, my hormones are making me crazy irritable, and I have yelled more than I care to admit. So at the end of each day, I think of one thing I could have done better, and I tell my kids what that thing is. In the evenings, when I have the energy, I’ve been revisiting parenting books I respect and jotting down just one thing I can work on each week. It’s the same lesson I learned with Anna’s development: slow, small changes end up being much more long-lasting than looking towards a horizon we can’t yet clearly see.
When Anna was first diagnosed, it felt like everything went through a narrowing: I didn’t have time for many friends, I didn’t have time to do anything for myself, and I felt bitter about the life I had lost. What I couldn’t see then was the deepening of my life that was all the while happening, quiet and invisible alongside the initial trauma of change. I hope—and I truly believe—that we will see the fruits of this pandemic in time. I can already sense some of them: a new kind of intimacy with my family, a rethinking of how to make the ordinary more meaningful, a deep appreciation for what will one day return—and, mercifully, what won’t.