When I was a child, I watched this hilarious episode of Seinfeld. Jerry was going to a cabin, and along the way, there was a fan that wanted to meet him. The fan was a child that was chronically ill and lived inside a bubble. As with most Seinfeld episodes, it took some ridiculous twists and turns. One of the funniest parts is when Jerry’s friend, George, ends up at the home of “Bubble Boy.” They are playing a game of Trivial Pursuit, and George and “Bubble boy” end up in an argument over the answer to a question. As they are fighting, they begin to have a physical altercation, and the boy’s bubble pops. The scene cuts to an ambulance coming, and everyone hates George for destroying Bubble Boy’s life.
Seinfeld was never one of my favorite shows but this episode, in general, has always stuck out to me because the entire premise of the episode seemed so unbelievable. Fast forward to my world in 2017, and I am a raising a child that lives in a bubble. Our bubble doesn’t exist, of course, but he does live a very sheltered life away from the outside world of germs. Since his birth in 2012, we have always gone into hibernation mode during the winter months to shield him from influenza and cold season that infiltrates our state.
Winter is a natural time for most families to hunker down, stay inside, and reduce their social calendars. However, in our world, the walls of our house become our world, and the only time we venture out is for groceries or trips to friends homes. I find myself continually screening family and friends before connecting to verify if they have a cough, stuffy nose, sniffle, rash, stomach ache, or any random pain that might infect our home. We have missed family holidays, birthday parties, social gatherings, church events, and nights out to ensure our families exposure to germs is reduced.
Obviously, this is not perfect, as we do have to go to appointments, go to stores, and my husband works outside of the home. Germs will and do get into our house, and over the years we have all had our share of illnesses. No one has been more hard hit that our son who is medically fragile. When I get a stomach bug, I am laid up for a couple of days in bed. I can typically manage dehydration and pain without medical intervention. These infections end up being minor inconveniences for me. Unfortunately, it is not the case for my son.
Over the course of his life, he has had to be hospitalized for infections that were minor for my husband or me. At three months of age, a simple cold landed him on life support for eight days and a hospitalization for 18 days. He’s had dozens of trips to the ER for IVs, asthma attacks, hospitalizations, injections, and clinic visits to manage his symptoms. A stomach bug that had him vomiting rendered him unconscious in our home and four days in the hospital. This gastrointestinal virus landed my son on oxygen, he had a high fever, and he needed IV fluids the entire time. Nothing for him is “just a virus.”
Our family has heard a lot of comments about our management of his health. We have had people be very critical of our choices to shield him from germs. People often say things like:
“He needs to be exposed to germs.”
“He can’t live in a bubble.”
“You are just being overprotective and exaggerating how sick he is.”
“All kids get sick.”
I often realize these comments are made out of ignorance, and I find myself educating a lot of people that make these comments about the severity of his chronic illnesses. We also know that unless you have walked in our shoes, most people will never understand what it’s like to raise a child that is medically fragile.
There are families all over the world just like ours making the tough choice to limit their child’s exposure to germs to ensure their child’s long-term safety. Most of us would much rather go out and see the world. We want to give our children memories, go to parties, participate in events, and be active with our communities. Unfortunately, for many of us, doctors have also been very clear about the ramifications of what viruses can do to our children. For many of us, we don’t have to look far to find a story about a child like ours that has died from a cold, virus, or bacterial infection. Our children don’t have immune systems that work as efficiently, or they have underlying diseases that make their body incapable of fighting off infections.
Living in a bubble can be incredibly lonely and isolating. There are weeks we can go with only seeing doctors, therapists, or members of our care team for our son. Our relationships with friends begin to separate, and we watch people move on from our lives. We are not accessible to most of the world, and it’s hard for most people to stick with us. Our lives are not lived in the world; they are lived in our bubbles. As we remain in our bubble to keep our children safe, the rest of the world moves on from us. Our lives stay stuck in a virtual reality of care management, doctor appointments, and trips to the pharmacy.
Raising a child that is medically fragile isn’t just about managing the disease, but also maintaining our child’s exposure to germs. We have to make tough choices that we know will keep us away from everyone we love. I know that many of us are in desperate need of social interaction, but we see the ramifications of how one social event can land our child in the hospital. Most of us would love to be less careful, throw caution to the wind, and take our kids out and be a part of the living world. We want our kids to live, and we know their bodies cannot manage the world filled with virus and disease.
If you are reading this and have a friend or family member with a medically fragile child, please do not give up on them. Many of these children will grow stronger and be able to manage viruses as they get bigger. You may not get to see them as frequently as you like, they may break plans, and you may not be able to rely on these families. However, it isn’t because they want to let you down. Please understand all families in this position are making these tough choices to make sure their child lives. No one wants to bury their child, and for many families taking these steps ensures their child will live to see another day.