I wasn’t prepared for this.

I wasn’t prepared for the tears.

I wasn’t prepared for the research I would do.

I wasn’t prepared for how angry I would feel.

I wasn’t prepared for how I would be learning.

I wasn’t prepared.

And no one could have prepared me.

Growing up I had a lot of social and learning struggles. I had a lot of friends around me, but I was always the back up friend. My so-called friends mocked and belittled me a lot. The learning differences I had were extreme. I knew when I had kids there would be a high chance, they would have the same or similar learning differences. What I didn’t know… what no one knew… the things I wasn’t diagnosed with, but struggled with, have a name now.

And my kids got it so much worse.

Our son almost passes out every day, multiple times a day. Sometimes He goes out completely when he doesn’t catch it in time. And has a resting heart rate most have when exercising. Our daughter lives with fatigue that no 15-yr old should have. She shouldn’t need 2 hr naps mid day, and then still go to bed at 8pm. She shouldn’t need to be careful about her emotions and how excited she gets, but she does because if she forgets the nausea wave ruins the rest of the day. Hang outs with friends ruined, simply by being excited for it.

Compression garments, insane amounts of salt, sodium, and water every day. Avoid excess heat. Have portable fans. Ice packs on standby. AC is necessary. Exercise is haphazard, even though they truly need it sometimes their body quite literally can’t.

POTS.

I hate that word. I LOATH that word. That word has consumed so much of my time reading about what it is, what it isn’t, what has helped others. The word has changed our lives.

My daughter says it well, “we have so many letters attached to our name, and we haven’t even gone to school to become doctors”

We aren’t new to diagnosis. We aren’t new to being told new about their health. Our daughter has spent more time in hospital than many will in their lifetime. But this diagnosis hit hard.

I had been researching for a while, and I was confident this is what we were dealing with. But getting the confirmation was something else entirely. I could advocate for ADHD and Autism. But this was something totally new.

I have years of researching and reading about ADHD and Autism. But POTS, I knew nothing. How on earth was I going to support not one, but two kids with this condition.

To say I felt behind the game is an understatement.

This condition alters the way you live. It alters how you have fun. It alters your day-to-day life.

I am beyond thankful we already homeschooled because with our daughter’s fatigue, she would miss so much school. With our son feeling ill and almost passing out on the regular, he would miss a lot of school too.

They feel cheated. They feel let down by their own bodies.

And if I’m honest… so do I.

But here’s what I’m learning, slowly and sometimes unwillingly:
we don’t have to love this to learn how to live with it.

We are figuring out new rhythms. New limits. New ways to show up for our kids.

It’s messy. It’s exhausting. It’s unfair.

But it’s also ours.

And while I wasn’t prepared for any of this…

I’m here now.

And I’m not going anywhere.

They aren’t alone in this, and neither are you.

The Honest Middle