Some of you may already know Jeannett and her blog, Life Rearranged.
If you don’t, I would put it at the top of your “to-read” list.
This week she shared a story very close to her heart.
And when I read her words, I felt a part of my heart break a little.
Somehow, I felt both powerless and inspired at the same time.
Jeannett has a gift with words and an important story to share.
With her permission, I am sharing her post with y’all today.
A few days after Jill’s first seizure, we went to church.
A woman I vaguely recognized cooed over my girls, then not yet 1, and then leaned over, whispering “Did you hear what happened with the Gibsons?”
“Yes. We are the Gibsons.”
“Oh. I’m so sorry. But you’re here? At church? Already? It must have not been that bad. Thank the Lord!”
I smiled and murmured something about yes, it was all very great.
While she may have been the most forward in her assessment of our situation, I hear some version of it every time. Everything goes back to normal so quickly. Surely it wasn’t that terrible. Right?
But here’s the thing: epilepsy is a crazy world to live in. It’s quite the roller coaster, as I would imagine many disorders and conditions can be…but there is so little understanding of what it means and what it entails, that people often don’t understand or know how to respond.
People don’t seem to have much of a grasp on what epilepsy even really means. In fact, I would guess most people assume a seizure is the flailing, convulsing that you see in movies and on TV. I mean, that’s totally what I thought.
Until, of course, my daughter had her first seizure 2 weeks shy of her first birthday.
Epilepsy comes in many different shades, and honestly, it looks different for each sufferer. So I can’t tell you what everyone else’s life looks like. But I can tell you a little bit about our journey.
Most seizures last a few moments to a few minutes.
Status epilepticus (SE) is a life-threatening condition in which the brain is in a state of persistent seizure. Definitions vary, but traditionally it is defined as one continuous, unremitting seizure lasting longer than 5 minutes, or recurrent seizures without regaining consciousness between seizures for greater than 5 minutes. Treatment is, however, generally started after the seizure has lasted five minutes. It is always considered a medical emergency. There is some evidence that five minutes is sufficient to damage neurons and that seizures are unlikely to self-terminate by that time.
I effing hate that paragraph.
I come across a similar version often. Each time I try to skip it as quickly as I recognize it coming.
Because Miss Jill? Her shortest seizure EVER was 45 minutes.
The longest, 3.5 hours. HOURS.
The mortality rate of status epilepticus has the potential to be quite high (at least 20%), especially if treatment is not initiated quickly.
It’s considered SE after five frickin’ minutes.
45 minutes was our shortest. Shortest.
A dizzying amount of medication is required to stop them. And as hard as it is to type, the fact is that without that medication, it is unlikely that her seizures would EVER stop on their own. That is, until her body gave up completely.
So. Yeah. That’s what we deal with. Every. single. seizure.
So far we’re averaging about twice a year.
Twice a year we are thrown into a world from one, normal, just like everybody else moment into pacing the emergency room and wondering if this is the dress I bury my girl in.
I can’t even believe I admitted that out loud. Much less put it in print.
Doctors are scared. Nurses look to me with trembling hands. I pray and pray and pray. Not today. Not this time. Just a little more time.
I so wish I was being dramatic.
But when your doctor admits that not only is your daughter one of her top 3 most complex cases…but that it’s amazing her little body can tolerate that much medication to stop said seizure…because the sheer volume she receives would kill many other children.
More meds. More meds. More meds.
But not too much.
Once the seizure is finally stopped, everyone in the room, mamas, daddies, and medical professionals alike, take a collective breath. Because I’m not sure a single one of us remembered to breathe the entire time.
We are monitored for a few more hours, just to be sure she doesn’t start up again.
And then, we go home. Taking our floppy, rag doll, exhausted, drugged up little blonde home with us.
The next 24 hours are hideous.
Seizures, particularly prolonged ones, leave the sufferer exhausted and with a migraine. Or so I’m told.
Add to it what amounts to withdrawals from the heavy duty drugs that saved her life…my poor girl is beside herself with pain. She doesn’t know what to do, how to cope, or likely, what on earth is even really going on. So she cries. Acts out in frustration. Hits me. Scratches. Bites. Screams.
Because it hurts.
For all of us.
I am left a puddle of tears with skin raw from little hands that can’t think to do anything except lash out against their own pain.
But it ends.
By day 2, she is back to her usual self. Perhaps still a bit tired and diluted from the previous days’ trauma, but she’s there and smiling.
By day 3, she’s rebounded entirely and goes to school or church or therapy. As if nothing happened.
To those who don’t live within these walls and under this roof, it seems to be no big deal. Sure, stressful and scary, but within 48 hours, she’s happy and playing. Being a goofball and making messes.
What people do not realize is that just 48 hours earlier, and the end result could have been very very different.
That it was a very VERY big deal.
Except that now it’s not.
And that is a surreal place to live.
To go from one extreme to the next with a short “recovery” time. Not weeks of slow change to normal. But one or two days and it’s as if nothing was ever wrong.
Twice a year. Sometimes three.
Like the roller coaster where you swear you’re going to puke any second, but then it comes to a screeching stop and you jump off the ride and go skipping down the ramp to the next attraction. All better. The fear mostly forgotten if not for your frayed nerves.
A friend of mine has a son who battled childhood cancer. I texted her once admitting “You know, at least with cancer people get it. They understand how it must feel for you as a mom. I don’t think people get that I live that too. Just differently.”
While we do not live our lives paralyzed by fear, we are always at the ready. Always on our toes. Always ready to spring into action. Always worried if she’s been playing quietly for too long. Or taken an extra long nap. Or…anything really.
And that’s how it goes. Is it exhausting? I don’t know. Because truthfully it’s a life we’ve lived for so long. I don’t know. It’s our normal, I suppose. I would imagine that all mamas worry all day long about something or another.
I guess my point…with this post…with this series…with this fundraiser…is to teach everyone a little bit about epilepsy. After all, it affects 1 in 26 people in America. And while it’s different for each of those 26 people, more awareness from our friends and family…for research…for finding cures…for developing better technologies…it’s important.
Not just for Jill. But for Henry and Lucy and Owen too.
We all have epilepsy.
And this is where I’m humbly asking for your contribution to help end epilepsy and fund more awareness and research. I know it’s not a hot button issue like providing clean water or funding adoptions for orphans, but it’s hot button for us. And I’d love your help.
Don’t feel like it has to be a huge amount. We raised almost $9,500 for Cliff’s adoption fund a few years ago. The average donation was less than $10.
$5 at a time we can do this.
Heck, $1 at a time.
And/or shop our Team Jilly store.
FRIDAY is the last day to place your order for shirts and bracelets. Take the plunge. Join us.
That’s this week. Just a few more days.
Be on #teamjilly.
It’s a pretty rad team if I do say so myself.
And while you’re at it, hug your little one. Life is so fragile.