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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.