Parents of medically complex children are well-prepared to follow much of the advice about how to avoid theWe 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.
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 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.
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.