As I write this, my family is at the tail end of a long series of illnesses. For nearly four weeks, at least one of us was sick. We battled Covid, strep throat, pink eye, and sinus infections. It has been a particularly bad winter for germs, but then again, every winter seems to be bad for families like ours.
As you might imagine, fear of illness plays a large role for families who have a child with complex medical needs. My youngest daughter, JJ, is vulnerable enough that we can never let our guard down. Guests in our home must wash their hands the minute they cross the threshold. We will not shake hands or hug until this is done. In addition, every invitation to an event, opportunity for travel, or social occasion must be examined from multiple angles before a decision is finally made.
JJ does not have a documented immune deficiency, but it seems like she catches every germ that comes along. When she is sick, it lasts twice as long as it does for other people and hits her doubly hard. She struggles with sleep, moaning constantly throughout the night. Before she received her feeding tube, she would refuse to eat or drink for a frighteningly long time. Even with her tube, she still coughs and chokes unless the feed is run at a very slow rate. When she is ill, she is also usually so tired that she refuses to walk, stand or—sometimes—even sit up. All of this results in a terrible domino effect. She often falls behind on her therapies, gives up on communication, and rapidly loses skills.
Sometimes even something small can spell disaster. For example, one cold this winter led to an ear infection, complete refusal to drink, severe dehydration, a brush with death, and a week in the hospital. The only thing that saved her was the insertion of a feeding tube.
JJ is far from the only child with complex medical needs who struggles like this. In fact, she is one of the lucky ones. Though she is prone to colds, they rarely turn into anything more. There are many families with children who regularly suffer from bronchitis, pneumonia, or other more dangerous respiratory illnesses. Often, their parents are expert caregivers and well equipped with things like nasal suction machines, nebulizers, traches, ventilators, and cough assist machines. Despite this, these children can be in and out of the hospital all winter long.
When it comes to germs, in addition to a healthy dose of fear, families like ours also experience feelings of extreme vulnerability. Of course, our children are highly vulnerable, but we, the caregivers, are as well. This is because we often have specialized knowledge about our children and medical skills other babysitters and helpers have not mastered.
Even on my most miserable day of Covid, when my husband was at work, I still had to set up JJ’s formula in her feeding tube, prepare and administer her medications, resolve some pressing Medicaid issues, reschedule therapies and medical appointments, and get up in the night to help troubleshoot screaming tantrums. Though I was lucky enough to have family visiting and willing to help, I still didn’t have the time or energy to train them on this complex array of tasks. Never before had I realized just how essential I was to JJ and just how vulnerable this irreplaceability makes our entire family. I was haunted by visions of what would happen if I ever landed in the hospital, underwent major surgery, or—heaven forbid—passed away.
When we are part of a family whose child has complex medical needs, we are not only vulnerable to germs. We are also vulnerable to other people’s decisions. Whenever any of the four of us ventures out in public (especially in the wintertime) we are at the mercy of others, entirely powerless and almost completely ignorant about the situations around us. Is that person next to me just clearing their throat or in the beginning stages of Covid? Is that child not wearing a mask because they are healthy or because their parents forgot to bring one? We’ll never know, and yet our entire family’s well-being depends on these important pieces of missing information.
And yet, the last thing we want to do is cut ourselves off from the rest of the world. Like most people, we enjoy seeing friends and family and circulating in the world. Unlike most people, however, we constantly face difficult decisions and ethical dilemmas whenever we consider doing these things. For us, a social event is never just a social event. An invitation is never just an invitation. Instead, they are potential disasters but also possible sources of joy.
One of my favorite times with JJ was an event I almost bypassed in the name of safety. JJ was invited to a bowling party to celebrate the birthday of another girl with Rett Syndrome. However, the event was held in January—the height of cold and flu season. JJ had never met another girl with her syndrome in real life before (mostly due to our desire to protect her and other children like her), so I decided to take a chance and attend. In the end, it was wonderful. After trying out adaptive bowling, JJ squealed, clapped, and used her talker to ask for more turns. She came home laughing and giggling in the car, never knowing how close I had come to shutting the whole thing down before it had even begun.
One of the thorniest issues in the world of caregiving is that of quality of life. Many of us struggle with how much we are willing to risk in order to give our children good memories and social connections. Every child is different, so no parent is ever going to weigh the factors in quite the same way. Sadly, sometimes factors can include things like a child’s life span and what they can reasonably be expected to process, appreciate, and remember. In JJ’s case, she is a clever little girl who is very aware of her surroundings and appreciates collecting fun memories. At the same time, she gets sick easily and her future is wildly uncertain. Some days it doesn’t feel like we’re examining pros and cons or making thoughtful decisions. It really just feels like we’re winging it.
I don’t have any grand takeaways to end this post about germs and illnesses. Instead, I have a plea. The next time you have to make a health-related decision that could impact others, I’d like you to remember that there are families like mine out there.
It might seem like such a simple thing to choose to keep that appointment even though you’ve got a cough, to skip wearing that mask you kind of hate, or to return to work a day or two before you’re fully recovered. If everyone around you is healthy, resilient, and only responsible for themselves, then everything will probably be fine. But there are many things you will never know about that person sitting next to you in the waiting room or standing behind you in the checkout line.
We are all only as strong as our family’s most vulnerable member. That person could be helping an elderly relative, caring for a medically fragile spouse, or a treating cancer patients. Or they could be a parent just like me—going home to a child just like JJ.
What are your thoughts about our responsibilities towards others when it comes to germs and protecting people from illness? Let me know in the comments below.