When Your Child Realizes You Have a Chronic Illness

“Mom, will you get sick and go to the hospital again?”

My heart stopped. I could see the mixture of hope and anxiety written all over my daughter’s face. I so desperately wanted to tell her no. I wanted to reassure her that this was a one-time thing that would never happen again, but I couldn’t. The truth is, in her short 3.5 years of life, I’ve already been to the hospital three times. One of those times, I was taken away in an ambulance.

I have Crohn’s disease, rheumatoid arthritis, Ehlers-Danlos syndrome, asthma, SVT, and dysautonomia. I try as hard as I can to avoid the hospital and manage my illnesses at home, but sometimes that’s impossible. My most recent hospitalization was because I had an SVT and could not get my heart rate to go down on my own. (If you don’t know what it is, SVT stands for supraventricular tachycardia. It’s an extremely rapid heartbeat caused by a disruption of electrical impulses. My heart rate was hanging out around 190bpm.)

Because I’m currently pregnant, I had been told to go to the hospital if that happened. I tried every trick in the book to bring down my heart rate at home. (I even stuck my face in a bucket of snow. Twice!) Unfortunately, nothing worked. The only thing that eventually helped was medication at the hospital. I was kept overnight so the doctors could monitor me and the baby. This particular hospitalization was more of a nuisance than anything for me, but I know it didn’t feel that way for my daughter.

Every parent wants their kids to see them as an invincible superhero. In reality, though, none of us are perfect. Everyone has something they are struggling with. Perhaps the children of parents with chronic health conditions simply learn that lesson a little earlier than most. I wish I could shield her completely from the more frightening aspects of my illnesses, but I do believe that allowing myself some vulnerability is shaping her into a more empathetic and understanding individual.

At only 3 years old, it is abundantly clear that she genuinely cares about others. She is quick to offer stuffed animals, hugs, her favorite foods, calm down bottles, snuggles, and more if she thinks you’re not feeling well. I currently have a plethora of her favorite toys and calm down bottles by the side of my bed to help if my heart rate “gets bad” or I feel anxious. I may not be an invincible superhero, but I know my little one wouldn’t choose another mama.

“Probably,” I answered, “but I only go to the hospital when I need extra help because I know the doctors there will take good care of me and help me feel better.” I’m sure that’s not the answer she wanted, but it was the best one I could give her. She is still learning to process her emotions. I can tell that she is anxious and worried about me being sick. I do my best to reassure her that I have good doctors and I’m doing well.

My husband and I are working on normalizing disabilities and helping her to understand that some people just need a little extra help. We want her to understand that mommy is one of those people, but it’s nothing to be afraid of. I am extremely grateful to have an excellent care team who works as hard as they can to keep me healthy and functioning. I sincerely hope it’s a long time before I have an unexpected hospital stay again, but for now, we’re going to try to appreciate the time we have together instead of dwelling on the dreaded “next time.”