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
Loving Them Through What I Can’t Change
I can’t do anything about it.
I can’t fix it.
I can’t make it go away.
I don’t have clear answers.
All I can do is read, research and be here for the hugs, tears, disappointment, and anger.
POTS is such a frustrating disorder. It impacts everyone differently. Symptoms, impact of symptoms…
Have you heard of it? I’m guessing probably if you’ve found this blog.
Postural Orthostatic Tachycardia Syndrome.
It’s a central nervous system disorder; it impacts blood circulation and circulation in the body is what makes it work. Both our teens have been diagnosed this year. It’s a relief that my research and what I thought was going on, is. But it’s so disheartening that this is what they have to deal with now.
Our son passes out frequently with five or more almost pass outs per day that he catches in time. He struggles to play sports and be active. The brain fog and fatigue he feels impacts his day to day.
Our daughter deals with daily brain fog, exhaustion, nausea, dizziness, and near pass outs. She struggles to play sports and exercise, swimming triggers an episode every time, but its one of her favorite pass times. When she gets excited it triggers her entire nervous system and takes something fun and exciting and she ends up hugging a toilet. At almost fifteen that is not where she wants to be.
As their mom, it’s so hard to watch. To encourage through the hard. To acknowledge this royally sucks, but also, we must learn how to continue living and find joy in life. Teaching their friends what’s going on for them, how they can support their friend and how to be sensitive about it.
So much is trial and error.
So much is trying again the next day.
POTS doesn’t come with a roadmap. There isn’t a clear fix, a straight line, or a guaranteed outcome.
Some days feel manageable. Some days feel impossible. And most days fall somewhere in between.
So we keep going.
We keep learning.
We keep adjusting.
We keep showing up.
Not because it’s easy. Not because it’s fair. But because they deserve a life that still holds joy…even in the middle of all this.
And if you’re in this too, feeling just as overwhelmed and unsure…you’re not alone in it.
We’re all just doing the best we can, one day at a time.
You’re not alone.
The Honest Middle
I’m Not Just Raising My Kids, I’m Re-Parenting Myself
I always thought that if I raised my kids differently than I was it would be…clear.
But it isn’t.
It feels like guessing. It feels like questioning and second guessing everything.
I was raised in a strict conservative Christian home. We had strict rules we knew to obey, and there wasn’t wiggle room. I hated a lot of it. But I didn’t know anything different. I was seen as defiant, selfish, and strong willed. Those were not good traits to have.
I didn’t like having to apologize to my sisters before I was ready and hugging them. Even worse was if the conflict was because they were treating me horribly and I finally had enough and I was the one to get in trouble…again. I would have to say sorry, hug them and listen to the “sorry means you’ll never do it again” talk…again.
Why does this matter?
When I had our daughter, I was twenty-five. I was SO excited to be a mom, it was all I ever wanted to do! Holding that little, tiny human I felt intensely protective of her, and I knew I would never raise her in the same way. I was never told “just wait until you have a daughter just like you!” But I was told just wait until x,y,z, and you’ll see. What I learned…parenting is what you make it.
Our daughter is so easy to love. And that forced me to face something hard. Why didn’t it feel like I was loved the same way?
Our daughter brings so much joy into my life. But I struggled because, why didn’t I?
It was around when our daughter was two and our son was one, I began to realize that we could do things differently. We didn’t have to speak to have our kids listen to us. In fact, there was even better listening skills because it required getting down to their level and communicating.
I have been a very intentional parent from the start. Explaining the how’s and whys. “Because I said so” is something that doesn’t get said in our house. I work extremely hard to treat our kids how I wish I had been treated. Explaining things, listening to their ideas and viewpoints. Allowing them to question us, what we say and do and to ask why as many times as they need to get the answer their brain needed.
But it is HARD.
We don’t get manuals as parents. All I knew is I didn’t want their childhoods looking like mine. All I knew is what I DIDN’T want to do…I had no idea how to move forward into what we wanted. We didn’t have family around, we didn’t even have friends around.
It was brutally hard and I was desperately lonely, but there was a blessing that we didn’t have input. Sometimes I cried hard, wanting input and not having it…wanting help in a ‘I’m drowning’ sort of way. But it did allow us to carve a brand-new path.
And that path?
It wasn’t clear. It’s not neat. Its messy. And I started to realize something too. Parenting differently doesn’t mean it feels better right away. Sometimes it actually feels harder, because I’m not just raising our kids…I’m re-parenting myself at the same time.
Its making mistakes and owning it and apologizing to our kids.
It looks like second guessing myself after I walk away from a conversation.
It feels like maybe I’m just to soft…or to hard.
It looks like holding boundaries while still holding space for connection.
It is recognizing that while we are their parents, and they are our kids…they are their own person.
Maybe that’s why it feels so unclear.
Because I’m building something I was never shown.
There’s no map for what we are building. No voice in my head telling me “this is how it’s done.”
Just a quiet knowing that my kids deserve to be heard, respected and understood…even when I’m still learning how to do that myself.
So maybe it’s not suppose to feel clear.
Maybe it’s just suppose to be different.
You’re Seen
The Honest Middle
The Quiet Letdown After Another Appointment
Another deep breath… another medication to look up. Another hug with my kids, while they are angry that their body has betrayed them.
I’m so tired. So tired of telling them we will get through it. Telling them that yes this sucks, yes this is unfair, but you got this, I know you can do it.
I hear children are so resilient all the time. And they are, but sometimes they just don’t want to be. Sometimes, my kids want to swim without feeling nauseous and like they are going to faint. Sometimes, my kids want to play soccer or basketball without having to sit down so they don’t pass out again. Sometimes, my kids want to just feel normal…whatever normal actually looks like. They don’t want to always have a water bottle, salt packets and electrolytes, pulse ox in their bag.
I hate that I have to check with them before they leave, that they have everything they may end up needing. Why don’t they just get to leave?
It feels so desperately unfair.
I am that mom… the mom that has walked a mile in their shoes. I deal with chronic illness and health conditions too. Navigating my own health has been a long journey since I was 13. And now I am continuing with mine, and now both our young teens as well. The fatigue is real. So few genuinely understand. We are fortunate that we do have some that try to understand and are willing to learn about what we as a family go through on the daily.
Today is a day I just want to curl up in a corner with 5 fuzzy blankets, tea and read a book to disappear into another world. I can’t fix this for my kids. We just got back from one of their specialists and just like always its another thing to think over. Another thing to weigh the pros and cons.
So if you’re feeling like you want to tap out… I see you…I hear you. You’re not alone and its okay to feel very very done. But then wake up and do it all again.
You’re Seen.
The Honest Middle
The Honest Middle 