Worried About Living in Isolation?
By Laurie Strongin, CEO, Hope for Henry Foundation
Imagine. You can’t attend school. You can’t invite friends to celebrate your birthday. You can’t play team sports or go to the movies, ball games, grocery stores, libraries, museums, or festivals. With the threat of COVID-19, none of this is hard to imagine. We are all facing the very real prospect of living in isolation, cut off from much of what brings us pleasure. But this is what many kids with long-term illnesses — and their families — face every day.
When my son Henry had a bone marrow transplant, it was the beginning of 2 ½ years in virtually total isolation — an eternity to a four-year old. Henry’s colorless, quiet, sanitized, lonely hospital room was a shocking contrast from where we had been just two weeks earlier: school, an amusement park, a soccer game, and a huge, crowded going-away superhero party. Instead of the sounds of kids laughing or screaming with delight, the only noise was the constant swishing and beeping of Henry’s IV pump or the squeaking of the nurses’ shoes. Instead of colorful classroom walls featuring kids’ artwork or Henry’s bedroom filled with soccer trophies and Batman posters, the hospital room walls were white and bare. Replacing the scent of fresh popcorn or cookies or cut grass was the antiseptic smell of clean. We had traded everything for almost nothing at all.
We understood that while Henry was immune compromised, we would be stuck in a complicated maze of difficult options, having to constantly weigh the risks associated with exposure to germs with Henry’s and his younger brother Jack’s emotional well-being. We lived moment to moment, hour to hour, day to day — but never longer than that, in fear of what would happen next.
Chaos reigned as we attempted to straddle our yearning for a normal life (whatever that is) with the reality that the only truly predictable things were fear and loss. In spite of that, we did our very best to savor each day. We didn’t feel sorry for ourselves or even waste much energy wishing things were different. We just did what we had to do.
COVID-19 affects all of us. But few people understand the threat of exposure to deadly viruses more than families of kids with suppressed immune systems fighting for their lives. As we all work as hard as we can to keep the most vulnerable among us safe, Hope for Henry is ensuring that these amazing children and families don’t suffer the psychic damage of prolonged isolation. So, we are filling our Hope for Henry Super Duper Fun Carts with everything from Funko superheroes to March Madness swag to St. Patrick’s Day decor, Georgetown Cupcakes, and much more to bring hope, optimism, entertaining distractions, and incentives so they feel more supported, less alone, and so they keep on fighting.
