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What Post-Pandemic Looks Like for Us as the Family of a Child With a Rare Disease

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Spring has sprung, I’m fully vaccinated, and all around me people are starting to climb out of their bunkers. My newsfeed is filled with articles about post-COVID travel and what to wear after quarantine. People I know are dining in half-capacity restaurants or going maskless with vaccinated friends.

I, on the other hand, am renewing my Netflix subscription and ordering more yoga pants. Because even when COVID becomes as small a threat as polio now is, when being socially distant is once again a choice rather than an imperative, I’ll still be hunkered down.

That’s life when someone you love is living with a rare degenerative disease.

My 16-year-old daughter has not one, but two extremely rare diseases – one of just six in the world with her dual diagnosis. Once upon a time she could run and jump and sing. Now she is immobile, attached to a ventilator and nourished via a feeding tube. The world of fear and uncertainty that everyone encountered over the last 13 months is one in which my family had already been living for a decade.

We knew how to weigh the risks vs. the rewards of every outing way before Dr. Fauci explained it to us. We were permanently grounded, unable to fly with the array of equipment that accompanies us everywhere we go. We slathered on the sanitizer and obsessed over oxygenation. We had a supply of masks at the ready, which we pulled out at the slightest cough or sniffle.

And suddenly, everyone else met us where we were. There were no party invitations to decline or crowds to avoid. We didn’t have to reserve the disability seats at the movie theaters because all of the movies were being shown in our living room. Doctors Zoomed to us rather than us spending hours battling downtown traffic to get to them. We were no longer the only people we knew with pulse oximeters and daily temperature checks.

But now, just as our daffodils are peeking their heads out of the ground, our friends and neighbors are tentatively venturing out. Some experts say we’ll be “back to normal” as soon as summer, with vaccine cards being the passport out. But how can those of us in the rare disease and chronic illness community return to normal, when our normal is anything but?

For us, things won’t change too dramatically. Sure, I won’t hyperventilate at the thought of going to CVS or make my other kids shower the second they return from school. (Actually, I might keep doing that anyway; they are teenagers, after all.) But we’ll still be hunkered down and we’ll still be justifiably germaphobic.

It’s not just the medical mayhem we know so well that the rest of the world experienced during COVID. Over the last year issues, of life and death became paramount for everyone. People were forced inward literally, which for many led to a figurative turn inward as well. There was more time to reflect on what matters and to reexamine where they were spending their energy. This isn’t about learning to knit or becoming a master bread baker. It’s about recognizing the victory in greeting the challenges head-on and tapping into reserves of resilience we may not have known were within us.

Those of us in the rare disease community have had no choice but to draw from those reserves since Diagnosis Day. When our daughter was 4, my husband and I were told of her extremely rare mitochondrial disease and given a vague snapshot of what her future was likely to look like in a brief meeting with a geneticist. We were entirely unprepared for the news, unsure even what the word “mitochondria” meant. “Degenerative disease” was as unfathomable to us then as “global pandemic” was to us 15 months ago.

When the appointment was over, we were quiet in the crowded hospital elevator. I leaned against the back wall as we descended, needing the support to keep from disintegrating on the floor. On the wall next to the elevator door was a sign that read, “In case of emergency, push alarm.” I wanted so badly to push that button. I wanted bells to go off and sirens to ring and people in uniform to rush in and do something. But we just kept descending, feeling as though the floor was falling away beneath us.

And yet, fast forward to a Saturday date night when our nurse called out sick. No nurse meant no date, or so we thought. But our other two children cooked us a delicious meal of risotto and chocolate cake. They set up a table at the foot of our daughter’s bed, brought in two desk chairs, and waited on us. The candles they lit outshone the glowing numbers on her oximeter and ventilator; the music drowned out the thrumming of her food pump. It was easy and romantic and way less expensive than going out to dinner would have been.

As Brene Brown put it, we learned to “embrace the suck,” or perhaps to embrace life despite the suck, something I saw friends and neighbors do this past year with things like drive-by birthday parties and porch-band jam sessions.

While I’d venture to say that most in the rare disease community wouldn’t join by choice, as long as we’re stuck here, there’s something to be said for our collective ability to focus on what really matters. We simply don’t have the time or space to do otherwise. We know how to hold joy and fear simultaneously. We are able to thrive in unimaginable circumstances and to create corners of beauty in times of chaos and confusion.

With COVID, the rest of the world saw what it’s like to live a bit more in the moment, to celebrate the small victories and ride out the daily defeats. And I wonder if any of that will go with them as a souvenir when they clutch their vaccine passports and dash out of our town.

In the meantime, we’ll still be here, bathing in Purell and stocking medical supplies. We won’t be waiting for the light at the end of the tunnel, we’ll focus on making the tunnel itself as fabulous as we can.

After all, what other choice do we have?

Originally published: May 12, 2021
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