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Parenting When My Invisible Illness Became Visible

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My 8-year-old daughter has noticed kids can be mean to other kids over different body shapes and sizes. Although I’ve heard her express these concerns for a few months now, it was yesterday that she worried about people making fun of me. I’m swollen from the steroids I take to manage adrenal insufficiency, in tandem with the extra water I’m carrying around to keep the POTS dysautonomia symptoms at bay. Let’s face it, I don’t even recognize myself sometimes when I look in the mirror. Up until a month ago, I was taking in four liters of IV fluids a week. Now I drink a gallon of water a day to “keep my tank full,” as the experts say. Swollen is an understatement.

My daughter and I have always had an open dialogue about health related issues, especially in the wake of the traumatic brain injury that changed my life when she was just 2 years old. In consultation with experts, I learned that kids have more anxiety when there are “secrets.” So I focused on age appropriate honesty about my healing journey that has unfolded since 2011.


This approach has been especially important as my body has changed time and again. There are months when my disability is “invisible,” and there are times when the struggle is readily apparent. The thing is, my little girl will tell you she loves my body because I am “cuddly” right now! Thankfully, our home is filled with positive conversation. She didn’t know me when I was anorexic (through my entire 20s), and she doesn’t remember what I looked like before the TBI. We simply accept and love each other unconditionally as both of our bodies are changing, albeit for different reasons.

Today, though, I was proud of her for communicating one of her worries with me — again, the benefit of open dialogue. With school, she expressed concern that others will judge us (yes, her too) because I “look different than the other mommies.”

It’s sad that we live in a world where an 8-year-old is aware of such things. However, it’s also an opportunity — people look different for a variety of reasons. It wouldn’t matter if I was in a wheelchair, or losing my hair, or with a prosthetic leg, or swollen as I am from life saving steroids — when a condition, illness or injury becomes visible, there is always the opportunity for judgment and misunderstanding. But there is also an opportunity to educate and raise awareness. I am grateful to have a little girl whose first reaction is compassion and kindness.

My daughter has lived with a mom with a disability for as long as she can remember. She doesn’t see any weakness in me, just the incredible strength I bring to her as her mother.

There are all kinds of disabilities out there, I just happen to have one that’s visible at the moment…and that’s OK.

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Originally published: September 14, 2017
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