When you have a child that doesn’t look sick, has no cognitive impairment, and no visible physical disability, it is extremely difficult to explain to others why he is always at a doctor appointment, or gets hospitalized for weeks to months at a time. When he is well, he blends in with the other children in the neighborhood, choosing a weapon and chasing each other, running from yard to yard, even jumping on the trampoline with his friends, at least in the summer.
Unfortunately for my son, viruses and bacteria are life-threatening. Every parent of a newborn understands the dangers of their baby contracting a viral illness or bacterial infection. But as babies grow into children, for some reason, many parents become just a little less obsessed with the possibility of their child getting a common cold. It seems many parents almost expect their baby to “catch” something once they are placed into daycare or begin to attend school.
For some parents, though, this possibility can mean serious upheaval in their lives. A child with a primary immunodeficiency cannot fight a common cold as easily as a person with an intact immune system. When my son gets the common cold, we usually get a culture at the doctor’s office or ER and within a short period of time we are well-informed on the name of the virus and the course it can take within the body. Your average parent can’t determine parainfluenza from regular influenza, enterovirus from adenovirus, etc. But as a parent to a child with a primary immunodeficiency, I’m well informed on how easily my son can contract a virus and how devastatingly impactful that virus will be to his health and the adjustments our family will have to make should he be hospitalized.
Parents often share responsibilities within their household, but when you have a child with a rare disease those responsibilities multiply. Not only are we doing laundry, taking out trash, and doing dishes, we are choosing who will take which child to their doctor appointments, or who will be spending the night at the hospital while the other adjusts their work schedule to get the other child to and from school in the other parent’s absence. As time goes on, the siblings in the family also become more in tune with the shift in responsibilities and pick up chores and tasks they wouldn’t normally do at home (whether they like it or not) while their sibling is hospitalized.
Many people in our community have extremely weak immune systems — you can compare their immune function to that of a newborn. If you felt you might be coming down with a cold, would you visit a loved one with a newborn? I only wish we lived in a world where everyone would ask themselves this question before sending their child to school or going anywhere within the community while sick.