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My Adventurous Life Dealing With POTS While Raising Kids

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I grabbed my notes from my cardiologist appointment. Maybe he just sent it to the wrong pharmacy? They told me he had called it in a week ago, but here I was and my medicine was not where it should be. I take a medication that elevates my blood pressure to minimize the pre-syncope symptoms of my postural orthostatic tachycardia syndrome (POTS). I looked down at my bottle — only one pill left. I called one last pharmacy, and they said they could renew my script from my previous doctor because I have one last refill, but it wouldn’t be ready until Wednesday morning, a day and a half away. God help me, that was scary news… and here’s why.

I am a stay-at-home mom with a 4-year-old, a 2-year-old, and a 7-month-old. My most recent POTS flare up began after the birth of my youngest, about seven months ago, which has limited my activity significantly. On any given day I would black out three to four times, feel dizzy upon standing and more than likely experience an arrhythmia once a day. Before I knew that I had a physiological reason for these symptoms, I thought it was due to stress. (As it turns out, I actually have mad stress management skills, given the circumstances.) The medicine I take helps me get by. It’s not magical, I’m not cured… it just keeps me from experiencing symptoms that make my body shut down. Which is what happened on that day I ran out of medicine. I could barely function, my children were getting over ear aches and a sinus infection, the baby wouldn’t sleep… it was a challenging day for any parent, and I was navigating it sans medication.

Life with chronic illness, while caring for small children, is a constant adventure.

My kids don’t yet understand why I spend so much time on the couch, or why I minimized most of our possessions so I can better manage them. To them, it’s business as usual. They are content, they keep going.

They do know I won’t chase them, so they occasionally disobey to my face. This presents the added challenge of how to discipline such behaviors from the couch and since small children have short attention spans. (Pro tip: yelling may make you feel proactive, but speaking soft and connecting makes them feel the weight of their choice.)

We try to put extra priority on discipline that directly affects me. Call it survival mode, call it brilliant… but I could care less if they help take out the trash if they know how to quickly track down my phone in the event of an emergency, or know how to grab a cup of water from the kitchen.

We are no stranger to doctor’s offices and hospitals, so we bought our kids a set of “doctor toys” that more closely resemble the real things. I cannot remove the fear that comes with my illness, but I can empower them to understand what’s going on over time.

So far I have two illnesses and one heart defect formally diagnosed. (I am seeing more specialists soon.) It’s important to me to get answers, because many of these conditions have hereditary components. I want to empower my children with knowledge. I want them to feel safe in their bodies, because I know what it feels like to not feel that way.

I can no longer manage a grocery trip with children in tow. Even on their best behavior, I don’t have the stamina to stand and walk across a grocery store, let alone tend to kids while I do so. Due to my shortness of breath and chest pressure my doctor has asked that I begin using motorized carts so I don’t find myself in a compromising situation (this ought to be fun!)

All in all, I wouldn’t change a thing about choosing to be a stay-at-home parent with my medical conditions. Though it looks different, life wouldn’t be as rich without them and their shenanigans.

Will it always be this way?

No. 1. I could come out of this flare up at any time, and 2. One kid begins kindergarten soon and another will attend school to receive speech therapy. The journey may take many twists and turns, but no matter what I am just a mom, raising kids… who happens to have a life-altering medical condition.

Getty photo by Liderina

Originally published: March 3, 2018
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