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The first POTS t-shirt

October is Dysautonomia Awareness Month and the beginning of the school year, so it’s the perfect kick-off time for a little project that my girl and I have been stewing on for a while. Though an estimated 1-3 million Americans are living with POTS (postural orthostatic tachycardia syndrome), most people have never heard of it […]

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Handle with prayer

Our children learn from us. Good and bad. My oldest learned independence and a severe aversion to ask for help. Asking for help seems weak. We can handle this on our own. We handled POTS at it’s worst. We can handle anything? WRONG. Sometimes we can’t. But we try. And flounder. And then, eventually have […]

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The second good-bye…

…is easier. I feel like it shouldn’t be. Like somehow I’m not a good mom because I wasn’t sobbing all the way home. But it was easier. This morning Tiara packed up her things while I tidied up my office and the girls worked on school assignments. We made a list of errands just like […]

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One hundred likes.

Last night, three days after saying goodbye to my oldest daughter and closest friend, I sat down to type a post on one of the POTS Facebook pages that I belong to. I rarely post there, but it was time. This morning it had 104 likes and a flood of comments. “I got quiet when […]

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Memories without photographs

My three youngest girls are all at summer camp leaving just Kirk, T, and I home in quiet. This is our week, T’s and mine – our week to spend together quietly before the craziness of the next two months and the big move to university too far away. We had a million plans. Manicures […]

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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, […]

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POTS: Emergency Preparedness For POTS

I remember moving to Maryland just days before a hurricane knocked out power for days.  No power = no water.  Of course, then we’d planned.  We’d filled bathtubs and water bottles and buckets.  We did the best we could, but then, there wasn’t a Potsie in the family and you can’t always plan because you […]

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POTS: Four Days Later (and no falling shoes)

There’s no fanfare or momentous bouts of joy.  Though I think joy is there, this new freedom has come as quietly as it left.  The dizziness of POTS is nearly gone, we hope, for good. Though we feel so blessed to see that she’s finally found something that works, the house is eerily quiet and […]

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POTS: Her Extraordinary

“When their normal is her extraordinary it’s a very, very precious moment. I know your heart tonight precious friend… It’s full. ♥” – HB   This is all so new.  It’s just been 24-hours since she stood, put her arms out, and broke down crying.  Just 24-hours since that walk to the mailbox and that […]

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POTS: When Hope was Napping.

Kids get sick.  You take them to the doctor.  They get 10 days of some foul-tasting antibiotic.  The next day, really, usually within 24 hours, your kid perks up.  She feels a little better.  Even before the antibiotic is done, your kid seems good as new. That’s the expectation because that’s the norm. And then […]

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