THE QUARANTINE THAT NEVER ENDED: SURVIVING 2+ YEARS OF QUARANTINE WITH A MEDICALLY COMPLEX CHILD

When our sweet 4 pound baby girl came home from the NICU in September 2018, we broke the news to all of our friends, family and church that per our pediatrician’s recommendations, we would be entering a six month quarantine to protect our sweet Dallas’ lungs from viruses, we were generally met with a somewhat perplexed response...

“Quaran-what?”

Most people had no idea what we were talking about, much less any idea why we would do such a thing, but we took it in stride.

My previously social husband and I said “no” to all visitors, met grandparents at the door with hand sanitizer, and asked gracious church members not to expect a visit when dropping off meals for us. I got a big red sign that said “STOP I am a premie!” for the carseat and learned how to do a not so subtle “side step” away from the so-called Karens of the world whose hands reached for those of my precious girl’s while on walks. Mama Bear vibes strong from the get-go.

At first, quarantine was….nice! Our life had been nonstop as long as we could remember, and being home with our baby was peaceful - sleepless, but still and calm. I Facetimed friends and saw my parents when there was not a sniffle to be found. We breezed through the holidays, watching Christmas movies, doing cute little Instagram updates and generally enjoying the coziness of being a new little family.

Then January came.

Despite all of our best efforts, sweet Dallas caught RSV and we ended up back in the hospital. She was extremely sick. On day 5 of the virus, while my husband ran home to take the dogs out, Dallas’ O2 sats plummeted, codes were called and I found myself uttering the only words I could think of - “Jesus, help her!” while medical teams rushed around me reviving my tiny girl. We had already nearly lost her in the NICU, I couldn’t go through this again...but I did. And she made it, again. Having crossed the PICU off our list of *fun* vacation spots, we settled even more into the quarantine, with a gut instinct that this decision was inexplicably life-saving for our baby girl. Many thought we were nuts! Most misunderstood. But we knew it was temporary - or so we thought.

That winter I learned a lot of ways to keep my mind busy, a true act of self care for my anxiety disorder and undealt-with PTSD. I listened to every podcast I could find about the NICU and motherhood. I dove headfirst into a wild TED Total Elimination Diet to help my baby’s food intolerances. I watched every episode of Call the Midwife and relished in my evening glass of wine. Stuck in isolation, I can’t say my mental health was good, but I survived. It’s what us mamas do.

And then...Spring came! And we were free! (Or so we thought.)
We made it through the long winter and despite Dallas’ challenges with RSV, food intolerances, reflux and colic, plus seeing only a handful of humans for 6 months - we were in relatively one piece. I remember the first time I took Dallas into Target with me. Prepared with hand sanitizer, toys, snacks, and water, I carefully situated her in the cart, looked at her sweet little chubby cheeks and said “We made it, baby girl!”

Summer of 2019 was JOY to us in so many ways: friends, pool time, big family gatherings, church, eating out, coffee shops, day trips to the zoo and the aquarium.

But that Fall my girl’s health started to go downhill again....she was sick constantly and strange and scary neurological symptoms had begun to pop up. That December, Dallas was hospitalized again for a week, at first we thought with the flu, but then suddenly everything changed: my one-year-old was getting a CT and neurology was contacted for an emergency appointment...something was seriously wrong. And just like that we were thrust into the medically complex world.

We made the heart-breaking decision to return to quarantine again until Spring.
No more coffee shops, no more church, no more friends, no more Target!
(Can someone say “No more Llama llama drama!?”)
It’s just one more Winter, I said to myself. You can do this.
So we stayed home once more.

This time, though, it was anything but peaceful. We were in the midst of a rare diagnosis process for our 1-year-old, who was having daily migraines and terrifying attacks of seizures, paralysis, and bizarre neurological episodes. Tests were being ordered, specialists referred, therapies beginning and it was HARD. It felt like a pretty strange world when I found myself dressing my toddler in cute party outfits for her specialists appointments because when else would she wear these? I spent most of the second wave of our quarantine learning how to be a caretaker and an advocate, reading research articles I barely understood, joining a thousand Facebook groups and diving headfirst in the beautiful secret that is the special needs community. We kept pushing for a diagnosis. And we kept pushing for April, our light at the end of the tunnel.

Then, one day in March my husband told me to stock up on toilet paper...
And suddenly everyone knew what Quarantine was!
At first I thought it was convenient (and a little funny) that everyone would join us in our last “month” of Quarantine #2. Ohhhh my sweet, sweet little mind, how little I knew...
I’ll spare you the details of the Corona Quarantine in our house because I have a faint notion you may already know what it’s like.

So now, it’s almost 2021 and with the exception of that beautiful Spring in 2019, we have been living in quarantine for well over two years. It’s more normal to us than life outside of our little house at this point. It’s often boring, usually messy, and my husband is nearly always the only one to make it out of pajamas. But as I sit here on my couch in the same sweatpants I’ve been in all week, watching my beautiful 2-year-old next to me work on standing, I thought I would share a few things I’ve picked up along the way. Now, I’m not here to tell you to get dressed and I have no clean diet tips (I’ve drank my weight in wine in 2020 alone). But I have lived in the lonely, seemingly forgotten place of a long-term quarantine for years now, so I would like to share what has helped me stay sane.

Reframe Friendships. Relationships can grow and even begin during a quarantine.
We are so used to in-person friendships that it can feel impossible at first, but it’s a real thing.
Katie. Annie. Rosie.
These are the names of three women I met in 2020, became friends with, and talk to nearly every day now. I have never met Katie in person and Rosie and I have really only seen each other through our porch windows during Starbucks drop-offs for each other.

Find Your People. Join the Facebook group for your child’s diagnosis. Use hashtags to find people in similar situations. Reach out to the mom who you relate to. Just find humans who make you feel less alone! This has been vital to our journey.

Listen to human voices (actual voices) that resonate. Podcasts and audiobooks have been my “friends” when I had no friends to talk to. Hearing other adults talking, and even moreso, talking about things you relate to can help keep your brain busy thinking about positive, productive things (rather than the dumpster fire that is the news or the feelings-a-thon this enneagram 4 loves to bask in on a bad day.)

Get Lost in a Story. My go to is a good YA novel series on audiobook. Sometimes a good series to stream. It gives me something to look forward to and makes doing the dishes a b it less dull.

Trust That it WILL End.
We’re still quarantined now and will be until COVID is well managed in our area.
So whether you’re isolating by choice or by mandate.
Or you’re a mom of a NICU baby staying home for the winter.
Or whether you’re feeling stuck and alone for any other reason.
This too shall end.
And I can assure you, we’ll be right here.