Parenting When My Invisible Illness Became Visible
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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There are terms to describe my creativity…words like “Synesthesia, Acquired Savantism and Accidental Genius” are all thrown about among experts talking about how I suddenly discovered the ability to paint in 2011 after a Traumatic Brain Injury. But this isn’t just a story of painting; it is my experience of transformation. I was an award-winning entrepreneur and nationally recognized business strategist in home health and hospice before the “mild” traumatic brain injury that changed my life. I was married at the time, at the pinnacle of my career, with a 2 year old daughter. In between business trips, I went to Costco to get a bag of cat food. While loading groceries, the hatch/tailgate of my SUV suddenly dropped on my head. Although I never lost consciousness, my life changed in an instant. Immediately, my career ended and I began a walk into the unknown. Shortly thereafter, I discovered that I could paint. I was not an artist before the accident; but suddenly, painting was as easy as breathing. With a new language – that of color – I transformed into an insatiable artist overnight. This is what it means to be an Acquired Savant. I am self-taught, and I have never taken an art class. I simply sat on the floor of the art store and allowed my hands to explore what felt right. That was the Summer of 2011. I am very fortunate that I do not have many of the tradeoffs that go with Acquired Savantism; Dr. Treffert calls this scenario “Accidental Genius.” My journey through art heals me, even as I continue to discover new health conditions as a result of the injury. I have Dysautonomia (POTS), Pituitary Dysfunction, Adrenal Insufficiency, Migraines, and other issues that impact day to day living. Still, I feel called to help others. Today, I am the same person that I always was; I have simply deepened in ways I never could have imagined. With my CEO days in the rear view mirror, I now study Theology – I’m getting my Masters of Divinity. I spend time with people that live outside – they are my teachers. I have a little menagerie of animals including goats, bulldog, cats, fish and horse – my horse is my physical therapist. I paint constantly in order to express the inexpressible. And…I am a single parent to a beautiful daughter – she is my greatest gift.
novelorica