By Paint Her in Color Founder, Laura Spiegel

Do you ever feel the need to talk about your child’s health at the oddest of times? I do. I’m not talking about run-of-the-mill conversations with the doctor, with close friends, or with other parents who can clearly relate. I’m talking about random, the-conversation-is-in-no-way-about-this-but-I-will-bend-it-there-dammit verbal diarrhea.

This usually happens to me when I meet someone new.

Last night, I met a delightful new couple in our neighborhood. When the husband mentioned that he was an ER nurse, I felt compelled to mention my daughter’s cystic fibrosis (CF). Beyond a shared appreciation for healthcare, the one topic has little relation to the other. Somehow, I managed to hold my tongue and steer the conversation back to less personal territory.

But I can’t help but reflect on the urge that came upon me. Why did I feel the need to throw my daughter’s health out there?

The same thing happens when I’m asked about my job. To pay the bills, I ghostwrite (riveting) technical articles for scientists and engineers. But what I really want to talk about is Paint Her in Color. A topic which naturally pivots back to CF…

The agony of the pandemic? An easy link to CF.

The cat’s respiratory infection? That’s got CF written all over it.

The construction down the street? Considerably tougher, but I’ll find a way to steer back to CF.

Why do I do this? Is it possible that while I’ve devoted this very site to not defining our children – and our families – by special health care needs, I’ve gone and done that very thing myself?

I do my best to not define my daughter by her health. She’s a vibrant soul who lives in color every step of the way. She’s a soccer player, a story teller, a devoted friend, a prankster, and a ray of light. Her CF doesn’t define her or hold her back from anything.

But have I defined myself as a medical mama?

I never envisioned myself in a caregiving role, but I can’t deny that caregiving is a big part of who I am. I want to help my daughter live her fullest alongside her brother more than anything in the world. And over the past few years, my professional purpose has become increasingly clear. I want to help other caregivers realize that they aren’t alone on their emotional journeys.

Like many caregivers, my daughter’s diagnosis provided a new lens through which to view the world. It gave me a fresh perspective about what’s important, what’s worth fighting for, and what defines a life well-lived. There is no aspect of my life today that isn’t in some way shaped by cystic fibrosis.  

But the last thing I want to do is shape the way the world sees my daughter because of her health. As I write this, my daughter is with her Brownie troop at an outdoor meeting in the park. They are learning about the senses by tasting foods that are salty, sweet, bitter, and sour. When the troop leader emailed a heads up about the snacks, my first thought was to pack a baggie of enzymes for my daughter to take with her. And hand sanitizer for a pre-snack de-germing of the park’s many microbes.  

On second thought, I had her pop some enzymes before we left the house and gave both her and her friend a Wet One for their pockets. The end result is the same; it’s just not as in-your-face conspicuous.

I never want to encourage my daughter to hide her CF from the world. I think it’s a part of her that deserves to be celebrated. (And her friends who marvel at her ability to swallow 6 pills at once do, too).

But as my daughter grows, I have to remember that her body belongs to her. If she wants to talk about the roller-skating rash on her elbow, her newly painted nails, or her CF, she can. If she doesn’t, then that’s that. Just because I’m a caregiver doesn’t mean I have complete ownership of her health – or any conversation about it.

As my kids reminded me this morning, with my perpetual sweat pants, piercing laugh, and stilted dance moves, I have lots of opportunities to embarrass them. Maybe, just maybe, my verbal diarrhea doesn’t have to be one of them.