Parents of medically complex children are well-prepared to follow much of the advice about how to avoid the coronavirus.
We have been using hand sanitizer by the gallon since our children were rushed to the neonatal intensive care unit shortly after birth. We have known about proper hand-washing techniques, making sure to reach to wash the backs of our hands and between each finger, since our child’s first surgery years ago. During cold and flu season every winter, we avoid large crowds. We always keep our children home from school when they are sick and always encourage others to do the same.
My 13-year-old daughter, Claire, is one of the at-risk children. She has a rare chromosomal abnormality that impacts nearly every part of her body. She is immunodeficient, requiring an antibiotic every day because her body cannot fight off germs on its own. She requires treatments to help her breathe because she has asthma. Her heart is in the wrong place, making her more susceptible to cardiac complications.
While other parents reassure one another that their children are unlikely to get sick from COVID-19 and hope for schools to remain open, I am working on managing my fear that this virus will kill my daughter.
Since the outbreak, we have stopped taking public transportation. We have avoided the playground. We have canceled plans to attend events like ice skating and parties. We have ramped up our already intense hand-washing and sanitizing routine. I wash the towels more frequently and wipe down doorknobs and faucet handles regularly with disinfectant.
I am making plans for what happens in the very likely event the virus continues to spread. I am thinking about how I can keep my four kids separated at home if one of them is exposed at school, and looking into any policies that might allow me to pull Claire’s siblings out of school for her safety. I am stocking up on board games, books and other activities that will keep my family of six occupied if we are quarantined because of exposure or because I make the calculation that the threat of going out is too dangerous to Claire. I have gone to Costco to stock up on foods Claire can eat easily.
At night, I lie awake wondering how Claire would manage such a serious illness. My fear is magnified by two different, but equally dangerous, trends I have seen develop.
The first is those spreading the information that “only” the elderly and medically complex individuals are at risk. This may convince someone they do not need to take the threat COVID-19 poses to my daughter and others like her seriously. They may skip washing their hands or may go to the movies with their only mildly sick child who may very well be spreading this virus even though they feel OK. They may break quarantine to attend a school dance.
I want to tell these people who say “only” about my daughter, about how much she enjoys being in the water, tickle fights and playing with her siblings. I want to tell them how much joy she brings her family and how loved she is at school. I want to tell them that her life is just as meaningful as theirs and that she deserves a chance to make it through this pandemic.
The second danger is the group that COVID-19 has turned into a selfish mob looking out only for themselves. I want to keep doing what I have always done to keep my daughter healthy, but I cannot keep my hands clean when our friends and neighbors are hoarding soap and hand sanitizer. I cannot follow recommendations to wipe down surfaces when there are only spaces on the shelves where disinfecting wipes used to be.
There is also the role that privilege plays in the pandemic. I cannot afford to keep an extra month’s supply of medication on hand for my daughter because to do so would cost thousands of dollars. Even those that mean well may go to work when they are sick because they do not have paid sick leave. A parent at my daughter’s school may send her sick child in because otherwise her child will not get breakfast or lunch that day. There are no easy fixes for these problems.
But, the truth is that we are all in this together. I cannot make anyone care about the health and well-being of my daughter and the thousands of people like her, but I can emphasize that we are all better off when we do our best to keep everyone healthy.
Keeping everyone healthy means not buying more than a bottle or two of hand sanitizer at time. It means texting your at-risk friends and neighbors to let them know you found some disinfectant and will be dropping some off for them. It means asking anyone you know is at higher risk if you can pick something up for them from the supermarket so they can avoid the crowds. It means inviting your friends with medically complex family members to your events and parties but letting them know you understand if they cannot attend. It means staying home if you feel sick.
And, please, continue to use soap even after the threat of COVID-19 passes. The well-being of my daughter hangs in the balance.
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