A few months ago, CNN highlighted a photography series of intimate pictures of daily life while parenting a chronically ill child, compiled by the Lucile Packard Foundation for Children’s Health. I just happened upon the article today.
As a parent of a child with chronic illness and developmental needs, the article resonated deeply, but it’s only the tip of the iceberg.
Upon doing my taxes this year, I found that roughly 45% of our income went to medical insurance and medical care, the bulk of which was for our son. But as the article alluded, my husband and I had a fairly hefty share as well. Our lack of quality sleep and chronic high stress levels mean that when we get sick, we often get really sick. In fact, just this week, my doctor had me tested for C Diff. After completing my appointment, I had to chug some Imodium and run Ben to two different doctors. I literally bleached my hands as I left the house, after changing all my clothing, doing my best not to spread my illness at the children’s hospital, and praying it was enough. At another time my husband could have taken him, but daddy is fighting bronchitis. It’s a no-win situation.
We are the “Super Parents” the article referenced, but it seems that our only super powers consist of sucking it up and doing what we need to do, even on the days that we are least able to do it.
Many people seem to assume that we automatically get respite or supplemental security income (SSI) for our children but that’s not the case. Those programs vary from state to state, and we live in Michigan, which doesn’t add anything to federal dollars for these programs, like 31 other states do. My husband and I usually tag team. We’re really good at it, giving each other brief respites, taking turns managing the extensive daily care for our child with complex medical and developmental needs.
But we have 2 other children at home too, and one of them also has Down syndrome. His needs are significantly less complex than Ben’s, but significantly more than a neurotypical child his age. He’s 14 years old, and cannot be left alone, even for a few minutes, and won’t be any time soon. At this point he’s more like a second grader and we’re not sure when he will be ready to be home alone. Add in extra school meetings and doctor appointments, and even though to us his care seems easy, it’s far more complicated than is average. Often in our juggling, the other children are the balls that drop – it seems impossible to keep them all in the air.
No, Super Parents we are not, but we are resilient, resourceful, resolute and steadfast. Most days it’s enough, but some days it isn’t even close.