I’m a parent to an amazing little human with an incredibly complex and challenging genetic disorder, weathering the never-ending pandemic storm of 2020 and 2021.

My husband, Ryan, and I brought our sweet son, Leo, into the world on May 5th, 2014, via the most incredible water birth experience. Leo Russell was a healthy 7 pound, 8 ounces, and 21-inch baby.

He was also born with an extremely rare, incurable, and terminal genetic disorder.

Through the grim prognosis and years of adversity, we’ve kept him remarkably healthy, primarily with the use of holistic measures, which include regular chiropractic and acupuncture appointments, homemade functional nutrition based purees given through his g-tube, lots of time out in nature, and other activities that go into his routine. Ryan and I are beyond proud of how well he’s living, despite his small stature of 16 pounds, at seven years old.

Our last seven years have been blood, sweat, tears, sacrifices, and massive joys—but truly, we wouldn’t have it any other way. Leo is our bright, shining star.

When the pandemic hit, we were midway through a cross-country move and settling phase. Relocating from the upper Midwest to Colorado was an exciting opportunity for us to cultivate a life we weren’t able to live in Wisconsin. Since we both worked remotely (well before it was a “thing”) and had no family or friends for a jumpstart to a local community, Colorado was our oyster.

Carpe diem and no rush, we gleefully assumed there would be apartment-hopping prior to settling into our ideal location and, eventually, buying a home.

Having had enough of the much-bigger-in-real-life compared to our imagination, Denver, we were excited to spend the next year or so just outside Boulder, Colorado.

Our new place had an epic panoramic view of the Flatiron Mountains and the iconic Longs Peak, which we were able to enjoy from two balconies and a cool open layout with tons of natural light. We loved it! This was a good thing because one month into our move, the “safer at home” pandemic orders were in place.

Part of Leo’s diagnosis includes the potential severity of respiratory issues, putting him into the extremely risky category for COVID-19.

Basically, if he were to catch this virus, he would not likely survive.

The privilege of both of us having remote work and not needing to navigate the newness of a work-from-home lifestyle, all while balancing the reality of a global pandemic, has never been lost or taken for granted. We know how incredibly lucky we are in this regard.

Our first couple of pandemic months were full of after-work and weekend hiking in the Boulder area, always pulling our vintage bandanas up from our necks and over our noses when meeting fellow hikers, just in case. Most others did the same. We appreciated the thoughtfulness of this widely practiced gesture in our new temporary home, even though we were outdoors, and the potential transmission was highly unlikely in open air. It felt good to know we were all conscientiously in this together.

As time wore on and cases continued to rise, our plans for visitors and for going back to see family and friends were postponed, further postponed, and, eventually, cancelled until further notice. Our high hopes for cultivating community and making friends had come to a screeching halt with the perpetual mindset of “once it’s safe, we’ll be able to.”

I’ll be the first to admit that Ryan and I were slightly reluctant at first about getting the vaccination from the perspective that we could still carry the virus, and likely transmit it to Leo regardless. We were already social distancing and opting to not gather with others, grocery shopping at off hours of the day, masking up when out of the home, and taking additional precautions seriously with Leo in mind.

Do we really need the vaccine too?

Yes. Because, what if? What if one of us, despite our continued above-and-beyond measures, comes in contact with it? What if our immune systems aren’t as strong as we assume and we end up being a casualty of the Delta variant? What if we survive the virus but end up with long-haulers syndrome?

Being vaccinated hasn’t come with the same “vaxxed and waxed; let’s travel” attitude we’ve witnessed our friends and family welcome with the opportunity of a post-pandemic life. It’s all the same for us. We continue living along with The Centers for Disease Control and Prevention (CDC) guidelines, because we have to.

Remember, the vaccine would benefit us, but we could still unknowingly catch and carry the virus, putting our son’s life in grave danger.

A friend of mine shared a meme on Instagram the other day that went something like this:

Out grocery shopping (wearing a mask).

Other customer to me: “Living in fear, huh?”

Me: “Yes. I work with vulnerable, critically ill, immunocompromised children. So, yeah. I’m afraid of killing a child. Thanks.”

Boom. Thank you! This is how we, parents of our extra-special kiddos, feel—and it’s only getting worse.

I try not to pass judgment. I try to see the medical freedom side of the coin, and as someone who relies heavily on the holistic side of medicine, I do get it. But, I can’t let go of the simple fact that many who refuse to get vaccinated also refuse to wear a mask. It now feels personal, as if my child’s life is worth less than their hill of “not being a sheep,” or, “not being complicit.”

I had a rude awakening upon leaving our little Boulder bubble on our camping trip to Grand Tetons National Park last summer. While passing fellow tourists on the magnificently scenic, yet often narrow, Jenny Lake Trail, pulling my teal bandana over my face, my cheerful “good morning” was frequently met with glares and eye rolls. In those moments, I genuinely did consider stopping to explain my situation and attempt a heartfelt conversation. I’m doubtful it would have mattered.

These days, as the numbers continue to surge, it’s a new level of demoralization for us. Wondering if, in our unique situation, we’ll ever be able to live normally again.

I miss my friends. I miss my family. I miss the opportunity to make new friends. I miss sharing Leo’s exuberant energy and belly laughs with our loved ones.

I miss being free from additional anxiety and crippling fear of a mutating virus that could kill my child for whom we’ve left everything on the field to keep him miraculously healthy thus far.

The discomfort I have writing this publicly is real.

I’m afraid of the hurtful comments that will undoubtedly be shared—the “fact-checkers” stating I’m wrong and, above all, those who will choose to simply shrug their shoulders proving that my son’s right to live isn’t as important as their right to not wear a mask.

Like many millennial moms, I’m a big fan of Brené Brown’s work, so I’m mindfully avoiding shame and finger-pointing. As she says:

“Shame corrodes the very part of us that believes we are capable of change.”             

Instead, I’m encouraging tough conversations full of vulnerability with loved ones as well as deep down within oneself.

There are millions out there, just like our little Leo, who are busy with enough cards stacked against them already.

Like it or not, we’re all truly in this one together. Let’s all do our best?