As published in Buffalo Healthy Living: Caring for a Child when You're Disabled

Caring for a Child with a Prolonged Illness

Take Care of Yourself and Rely on Your Instincts

by Helaine Sanders, LMSW and JD

I lived most of my adult life believing that if I worried enough about a bad outcome, it wouldn’t happen. With my pessimism and low expectations, what actually occurred would always be better than I thought. My son’s malignant tumor and current chemotherapy treatments shattered that belief. While I never had control, I had the illusion of control. That realization has made me more optimistic.

The only constant thing in my son’s treatment is its unpredictability. Following his first chemotherapy treatment, he had two bacterial infections. Three weeks later, after another chemotherapy treatment, his blood levels were off, and he was unable to come home.

You might think caring for a seriously ill child while you’re disabled is doubly challenging. It’s not. I am actually coping better because I know what it is like to have to struggle. Despite feeling like I am living through years, not weeks, I keep going. I’m making sure my own needs get met. After I posted my needs on Facebook, my friends responded offering girls’ nights out, food shopping, and food preparation. I’m was so grateful for this outpouring of love.

Even in these early weeks of a 29-week course of chemotherapy, I’ve learned some lessons that might help others. I particularly want to assure the disabled community that they can handle a child’s serious illness.

First, don’t underestimate your own value. You’ve got this because you’ve already learned to advocate for yourself.

Second, there’s no shame in asking for help. As I learned from a helpful counselor while I was recovering from my first depression, “Your job right now is not to prepare the food. Your job is to eat the food prepared.”

Third, simply be physically present. If 90 percent of life is showing up, being near your child suffices. There’s no need for constant engagement. You can do something you enjoy while he plays a video game.

Fourth, don’t forget about your other children. Let them know the distinction between quality and quantity. You may not be physically present, but they are always in your heart.

Fifth, the hardest part for any parent is an emergency situation. You will need to rely on your instincts. However, it’s no different than daily parenting. You’d know what to do if you had to pick up a child who became sick at school. Emergencies during a prolonged illness are no different. Trust yourself.

All parents, especially disabled ones, should remind themselves they always have more control than they think.

Helaine Sanders has found that her bipolar diagnosis does not limit her ability to parent a child with a prolonged illness and instead benefits her. Check out her website at www.JanesPlace.org which focuses on stigma in mental health, the immigrant population, and religious groups.