“This is the longest I’ve ever stayed home!” my daughter crowed triumphantly. “Forty-five days!”
I didn’t have the heart to point out her error.
Six years ago, when my daughter was first diagnosed with the genetic disease cystic fibrosis, she stayed home for six months straight. The following cold and flu season, she did it again. She only left the house for doctor’s appointments, RSV shots, and a Christmas Eve celebration with her grandparents.
When our daughter turned two, her pulmonologist announced that her lungs were healthy enough to brave the winter months. Seasonal isolation now posed a social risk. She needed to be around other people. See new places. Experience new things.
Slowly but surely, our family ventured out of its protective shell. We learned to practice strategic avoidance. Every birthday party or holiday gathering began with a quick text to make sure none of the revelers were sick. If they were, we stayed home.
We backed out of Thanksgiving one year. We left a vacation with extended family days early. Our ears evolved to hear a cough from miles away.
We kept Lysol wipes and hand sanitizer within snatching distance at all times. Like angels, these creature comforts swooped in and provided a sense of control amidst the great unknown.
As the years passed and our daughter grew, we slowly began to realize that we could not define her solely by her health. We wanted to do everything we could to help her lead a long and full life. We also wanted her to experience all the vibrancy and messiness that childhood has to offer.
We sent our daughter to public school. We signed her up for soccer and basketball. We encouraged her to join the Daisy scouts and smiled as she ran around the neighborhood with her brother and her best friend.
It wasn’t easy letting go, but we did it. Each time we felt tempted to put our daughter back inside her cocoon, the pulmonologist would gently pull us back. With patience and planning, our daughter could live both a safe life and a full life. Aside from hot tubs and ponds (two of the stealthiest breeders of bacteria around), very little was off limits.
We began to breathe more easily and laugh more freely. Our daughter had burst into the outside world with all the vibrancy of a butterfly. We had finally found our balance.
Then COVID-19 entered the scene, and overnight, we were catapulted back to square one. Inside the house. Warily eyeing any neighbor who ventured too close. Patting the bottle of Purell just to know that it’s there.
I looked up the definition of “déjà vu” the other day and smiled when I saw it. “Tedious familiarity.”
Nearly seven years after we cocooned our infant daughter, we stuffed our butterfly back inside. And while I think “tedious” is the perfect word to describe our days, she seems to think differently.
Our daughter completed a time capsule for her first-grade class last week. When asked to describe how she was feeling, she wrote “happy.”
She can be found most days reading, writing, and making art around — you guessed it — butterflies.