By Paint Her in Color Founder, Laura Spiegel

For the past four years, I have struggled to resist the urge to isolate my daughter, who has cystic fibrosis. How ironic is it that after finally overcoming this instinct, I am right back where I started? Not leaving the house. Lysoling every surface in sight. Keeping the Purell business booming.

If that’s not Mother Nature pulling a fast one on me, I don’t know what is…

From the moment our daughter was diagnosed with the genetic disease cystic fibrosis nearly seven years ago, my husband and I suited up for an all-out war on germs. As a cold could easily put our baby in the hospital, we were instructed to keep her home as much as possible from October through April of her first two years of life. She left the house for RSV shots, doctors’ appointments, and trips to her grandparents’ house. Nothing more.  

When our daughter was two, her pulmonologist told us that her lungs were big enough to withstand the “real world.” Quarantines during cold and flu season were no longer necessary. Socialization was critical. And thus began our journey to remain diligent in the war on germs while still allowing our daughter to live a full and normal life.

We began to venture out in winter using shopping cart covers and loads of hand sanitizer. Before attending social gatherings, we emailed friends and family to make sure everyone in attendance would be healthy. We learned to treat chronic hedgers with caution. You know the ones. Their kids are snotty, hacking up a lung, and green in the face. But don’t worry; they’re not contagious.

Like many CF mamas, my ears evolved to detect coughs from miles away. I’m not proud of it, but I tackled my toddler off a slide, off a (plastic) train, and out of countless movie seats in efforts to distance her from others who could be sick. Sure, I tried to play it cool. But it’s hard to be subtle when your three-year-old is shouting “Why are we moving seats again?” at the top of her lungs. Apparently, not everyone relocates thrice during Finding Dory.

Avoiding germs took center stage many times during those early years. We once fled a family vacation due to illness in our shared rental house. It was either that or spend the week staring down every communal chip bag reacher. One year, we cancelled Thanksgiving. Trust me. Hell hath no fury like a woman forfeiting pie.

It pains me to admit it, but when our daughter was younger, she was in many ways defined by her health. She had to be. That’s what kept her safe. But as she grew, my husband and I realized how important it was to fight this limited definition. Our daughter has cystic fibrosis, but that alone is not the entirety of who she is. She is a bright, kindhearted, brave little girl who loves Frozen 2, catching ladybugs, and dancing with her best friend. She also lives with cystic fibrosis.

With the help of my daughter’s doctor and other CF moms, I slowly learned to be cautious, not crazed, with my daughter’s care. I still want her to avoid people who are demonstrably ill, but in a classroom of twenty first graders, she can’t musical chairs it every day. And I do still like a good clean set of hands. Most days I scrub up like I’m headed into the OR instead of over to the couch. But the knee-jerk reaction to leap in front of my daughter to block her from germs? Let’s just say I’m not tackling kids off playground equipment anymore.

Instead, I have watched my daughter embrace the vibrant mess that is childhood. At six years old, she attends a huge, happy public school along with 700 of her closest friends. She is a Daisy Scout and plays soccer and basketball. She runs the neighborhood with her brother, digs for worms, and plays hide-and-seek with the best of them. Since she joined the nomadic crew of cul-de-sac playmates, my only rules have been “No shoes in the house” and “Wash your hands when you come inside.”

But when March hit, I felt a familiar fear in the pit of my stomach. At first, I swatted it away with “No big deals” and “Be cools.” I was a changed woman. I would not regress into a mama bear on roids. But the feeling of dread seeped into my bones more each day.

On March 13th, I told my daughter’s doctor that I felt an unsettling urge to pull my kids from school. “Am I crazy?” I asked. “Tell me I’m being crazy, and I won’t do it.”

Three days later, schools were closed, and we were catapulted back to square one. Stuck in the house. Warily eying passers-by. Lysol out the wazoo.

After years of slowly breaking down my daughter’s cocoon, I built a fortress for my family overnight.

First things first. If you haven’t built a fortress around your family, do it now. Glue your butt to the couch for a hot minute (or month). Find a new show. Dust off those Billy Blanks workout tapes. I don’t care what you do; just stay home. If you’re not going to do it for my daughter, do it for your own friends and family. Do it for the healthcare professionals who deserve to safely go home to their own families. If nothing else, do it so that if you have a heart attack or get into a car accident or experience any of the 900 potential side effects on your bottle of medication, you’ll have healthcare resources available to treat you.

I have no doubt that one day, this terrible time will be tucked safely away in the “past,” and our communities will come together stronger, wiser, and more compassionate than ever.

Just don’t be offended if you see me changing seats. It may take some time to reprogram myself after this one…