A POTS Reality Check. Finding empathy.

(For those of you who don’t know POTS, it’s a chronic illness that reared it’s ugly head into my oldest daughter’s life two years ago. POTS is ugly, but we all have our ugly. And some days, we all have a reality check too. Every kid has something. Whether it’s an illness, a personality quirk, or a fear… as parents we need to “walk a mile in their shoes” and understand what they’re going through.)

For nearly 18 months, POTS was in our thoughts daily, hourly, and sometimes without pause. It was that “new norm” that we wished would go away because my daughter’s case was “severe,” the doctor said, there isn’t a cure and treatment was a guessing game of trial and too many errors to count. So I was diligent and we were on top of it. I knew what was good and what was bad and we fit our life within those parameters.

Then something worked.  There was this amazing moment when she was walking again without holding on, when the dizziness was mostly gone and she wasn’t as tired as before. And the next day, and the day after that, she was still doing amazingly well.

So we joyously praised God for this gift, and embraced this new normal knowing that POTS was still there, but it was pushed aside, on the back burner, and nearly forgotten.  At least for me.

No, my daughter never forgot. She’s the one who manages her health.  At 18 and overly responsible, she remembers each of the 5 medications she needs and when she needs to take them. Some with food, some without. Her water and her salt. She’s brilliant and she never complains. (May be she should a bit more.)20130913-IMG_7064

So everything seemed fine and I pulled away from the POTS forums on Facebook because she was “better” and I didn’t need to worry.  And we planned a trip knowing that she can do roller coasters now and we’d have a blast.

And we did… but I was made to remember POTS and that’s a good thing.  Because though she manages so well and complains so little, I still need to be sensitive. She’s my kid. I should know better.

I knew she could do roller coasters and spinning rides. (We’d spent months focusing on CAN)  But then I saw her face after an intense 3D ride and knew she was hurting. The coaster with flashing lights was horrible too and the drop – I’d known, but hadn’t though about it. I should have known, but didn’t realize how detrimental it was to be startled. At 6pm a pirate walked ahead. We thought he was walking on, but he quickly doubled back, turned right at her and yelled. Anyone would have been startled. Her heart raced. She had chest pain, heart palpitations… the works. Our evening was paralyzed with fear and I began to understand.

She knew. She had concerns, but kept them to herself.  She even thought about making a special t-shirt to wear (and only told me while we were hiding out that evening).  “Cardiac Patient: DO NOT SCARE.”  It would have come in handy at Busch Garden’s Howl O Scream.  It’s a fun, family event, but there are employees in costumes lurking in every corner of the park scaring people. For most, it’s fun. For someone with POTS, it’s painful.

So while her dad and one sister raced to see every haunted house, she and I huddled in one safe corner of the park for nearly 4 hours watching her other two sisters, talking, keeping watch for swarthy pirates, and remembering that this illness is real and hasn’t left yet. For her, this was a confirmation of what she knew.  For me, this reality check was a kick in the pants and a movement towards empathy. Life moves quickly, but I can’t forget what she lives with daily and I need to acknowledge what an amazing job that she does in managing it all.

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