Dear Mom, It’s My Turn to Take Care of My Chronic Illness


Dear Mom (the best mom),

I love you so much, but I know I don’t understand what it’s like to love a child and the love you have for me. I realize when you were pregnant with me, this long, hard road wasn’t what you expected. You never expected to have to press your face against the isolette of a baby struggling to breathe; or to have to practice so many words so I could learn to communicate with the world around me; or to have to buy a home with a downstairs bedroom because there will be a day when your adult daughter can’t walk up stairs.

You always put on a brave face even when your eyes gave you away. Sometimes you were my verbal punching bag. We’ve been through countless doctor’s appointments, too many ambulance rides and more than my share of tests — always as a team. When I was a child, you were the captain, always carrying the handy list of medications and diagnoses, bullying the front desk to get me an appointment to see specialists and earning a PhD in our insurance coverage. You decided what tests we consented to, which doctors were a good fit and when a trip to the hospital was a necessity. This has been our system for many years, but it isn’t really working for me anymore.

I turned 21 this summer (not that I have to tell you that), and now it’s hard for me to balance the many parts of my life where I need you with my need for independence. It now frustrates me when doctors look to you for your opinion first or only approve me for procedures with your OK. It’s my life, so I wish you understood that your “helpful” reminder texts to pick up my meds from the pharmacy or call about lab results or to follow the cardiologist guidelines make me feel like you don’t trust me to take care of myself. You’ve put countless hours and a multitude of grey hairs into helping me stay alive and flourish, so I know it’s hard to hand over the reins to someone so inexperienced.

I’m not saying I can do it all alone. You’re the only person who has been down this whole road with me, the only person who can force the insurance company to show their hand — and yours is the lap I want to crawl into on my worst days. I’ve been told it’s normal to have friction when mother and child have to learn what their relationship is when they become mother and adult child.

I love you so much, and now that I’m an adult, I can appreciate how much you’ve done for me throughout my life. But I also need you to let me work for myself now.

The Mighty is asking the following: Write a letter to anyone you wish had a better understanding of your experience with disability and/or disease. If you’d like to participate, please send a blog post to [email protected] Please include a photo for the piece, a photo of yourself and 1-2 sentence bio. Check out our Share Your Story page for more about our submission guidelines.


Find this story helpful? Share it with someone you care about.


Related to Other

When Dystonia Put Someone Else in Control of My Body

I have a movement disorder called dystonia. I didn’t always have it. Gradually it started to take over my whole body: generalized dystonia. It started when I was in my 40s and no one knows why. At first it appeared as a slowing of movement. I couldn’t keep up with my swim buddies. I was [...]

Film Starring People With Down Syndrome Takes Aim at Misconceptions

When Roderick Stevens’ younger brother Andy moved in with him in 1993, there were lots of changes happening. Andy Stevens has Down syndrome and was 18 years old at the time. The brothers had just lost their mother to cancer when Roderick moved Andy into his home in Sierra Vista, Arizona, with his then-wife and [...]

To the Pharmacist Who Works Hard to Keep My Family Alive and Safe

To the pharmacist and techs who strive to keep us alive and safe, I took you for granted. I never even thought about how pivotal your jobs can be. An antibiotic here, some cough medicine there. No biggie. Then my kids came along. First allergy-induced hives. OK. So I notice you now.  Some steroids. Then nebulizer medicines. Then prescription antihistamines. Then EpiPens.  You are [...]

What You Miss When You Call a Child With Autism a ‘Public Nuisance’

“You have to stop hitting your head on the walls. If you do, they’re going to make us move,” I said, crying, trying to help my son calm down, desperate and not knowing what to do. He was 8 and having meltdowns every night after school. We had already received complaints from our neighbor in [...]