Our Roller Coaster {epilepsy}

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.

I pray.


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.

So bad.

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.

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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.

Please donate to our fundraiser page here.


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.

Donate directly HERE.  Shop HERE.




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I'm a mom to four. A wife to one. I believe in story. I love telling you about mine and would love to hear yours. There's really no sense in wasting our suffering and not sharing in each other's joy. We're all in this together...even if it doesn't always feel like it.

Latest posts by jeannett (see all)


  1. 1

    Beautiful and heart-wrenching. I’m attempting to fight back the tears because if I start it’s going to be the ugly cry, and I have to give a talk tonight and I don’t want my face to be all swollen. Also, I want to punch that lady in the face. Love you guys and your family.
    Brianna´s last blog post ..Are you in Denver?

  2. 2

    Proud of you. Can’t even pretend to understand, but will share the love today! Love is written all over this post …
    Sandy @ ReluctantEntertainer.com´s last blog post ..Pear Quinoa Salad for The Lemon Bowl’s Baby

  3. 3

    By the end of this post I found myself with my hand over my heart and biting my lip to try to stop the tears. Thank you for this. Thanks for your vulnerability and your transparency in what is a difficult, difficult thing. I definitely have new eyes to see others, and a bigger awareness of my words. I never want to be the one to give the easy cliche, the passing pat-on-the back. Just love. Just an “I’m with you in this.” {newly discovered you, btw, and am so glad I did}
    Sarah´s last blog post ..From the archives – potty training

  4. 4

    A rollercoaster ride it is indeed. Even though the seizures have stayed away for 21 months, my heart and mind are always still bracing for the worst. Thank you for brining awareness to epilepsy! Go #teamjilly!
    Laurie´s last blog post ..So long, depakote!

  5. 5
    sandy sato says:

    dearest Jeannett and Andy,
    we love you and pray for you and your sweet family. thank you for sharing your journey that we may have a glimpse of your life, your love and your struggles. xoxo sandy and ryan

  6. 6

    Oh how I wish I didn’t “get” this. Oh how I wish NOBODY had to “get” this, either. Now I don’t know this because my child is suffering, which I honestly think is probably harder, but it’s me. The living day to day not knowing that the next SECOND could change on a dime. Not knowing if I’ll be able to see my sweet babies’ faces ever again, to be able to drive them to school, to watch them dance like ballerinas or play T-ball like Kirby. This is what makes us stronger, more appreciative, more compassionate, more easy-going people who TRULY don’t sweat the small stuff. Indeed it stings a little (or a lot) when people say trivial things about something they likely haven’t taken the time to truly understand (I’ve been guilty of that very thing myself before all this), and it’s SO hard not to want to try to explain to them every little detail that’s rattling through our brains….so instead we smile and say “yes, we’re okay.” I applaud you for saying it how it is – REALLY – that takes guts and apparently I haven’t grown those yet. Holding back has greatly hindered my blogging posts and my Caringbridge journals, etc – because while I want people to understand what being me feels like, I also don’t want them to think I’m extremely depressed. I’m afraid of how I’d come across and while YES, THIS IS A HARD LIFE, I really AM fine. This life is God’s plan for me – no matter how difficult I think it is. So thank you, for being Jill’s voice, as well as mine and many others, I’m certain.
    Lindsay´s last blog post ..Hello, October.

  7. 7

    Oh mama! I read this and re-read it try to grasp it better. But that’s just it- there is no grasping it. I am sorry for you and for Jilly and for Andy and for Henry, Owen and Lucy. Not pity sorry. Like genuinely sorry that you go through this. My heart aches for you. While our circumstances are different, I know the feeling of everyone going on their merry way and acting as though nothing has happened. The unknowing is the worst. Will this be the time J sneaks out before any of us wake up and is never found? (so far, luckily he has always been found. But that little sucker has snuck out with only pjs – no shoes or anything- opened the garage door with the door opener to a crack that he could crawl under before we woke up!!!! I still have anxiety just thinking about it). Being on alert is a hard way to live. But you do it. And you do as best you can. Just know that while the Provost fam wears blue for the Dodgers, we cheer on Team Jilly in purple too. Love you!
    Mique´s last blog post ..5 Ingredient Blendtec Blender Peanut Butter Banana Muffins

  8. 8

    Just wanted to say thank you for sharing your story. I am so proud of families who take care of children with epilepsy. I worked with mentally handicapped kids for 1 year (it was voluntary service) so I know what you all are going thru.

    I don’t remember at the Home children having seizures that lasted as long as your sweet little girl’s did. But i remember watching children at the Home having seizures and my heart breaking as I watched them suffer thru them and not knowing what to do to help them.

    God’s blessings to you and your family! Praying for you all!

  9. 9

    i am so sorry about this whole story. I pray for all of your strength. I have now been diagnosed with epilepsy. I had a concussion over a year ago and it has brought on quite a few other brain disorders, Epilepsy being one.
    I have it at an older age though. I can only imagine being a parent is so very difficult. I can pray for you. I always say with my illness there is not too much I can do, but I can pray & I do. I pray often. I will add you & family to my prayer list. I thank you for sharing your story.
    Lots of love to you.
    lisa serrano diaz´s last blog post ..I appreciate Customer Reviews!

  10. 10

    just bought a shirt, shared on twitter and plan on running 5k myself on nov. 17 for Jilly. Love your guts girlfriend.

  11. 11

    Thanks for the post and for sharing your story.
    Jenni´s last blog post ..You might be a Texan living in Colorado…

  12. 12

    oh, dear. came here via little miss momma. your daughter is now in my prayers and close to my heart… as is your family. we are in the 29th week of our second pregnancy {we have a toddler boy already} and have learned 12 weeks ago that our little girl has trisomy-18… a fatal chromosomal disorder, and likely will not live to birth or much beyond it. i know what it feels like to read paragraphs about conditions that you “effing” hate reading. and i know what it feels like to not breathe. and what it feels like to love your little girl so much that you don’t want to lose her… not for anything. so i will be praying for you and your precious daughter. God bless you all. thanks for sharing your story… and for this blog. i don’t understand much about epilepsy, but i understand how people don’t understand what they have never experienced or had placed in their path. some day i will also share mine and my daughter’s story so that people might better understand. love what your last post says, too. God IS always good no matter what. finding that to be so true, even in this difficult time.

  13. 13

    I was a pediatric nurse for 19 years…and lived through what you described with many families. I do want to tell you of one child…who for no known reason around his 6th birthday suddenly stopped seizuring…from daily seizures to none…he went to school…played sports, no longer needed help to walk and is just a kid with all the other kids now…Have hope, keep praying, and know God is with you during every seizure, pacing with you.

  14. 14

    I’m right there with Brianna, holding back the ugly cry. Thank you for sharing. Thank you for being honest. I had a boyfriend in college that had epilepsy and I remember how terrifying it was for a grown man to not know when the next one would be.
    I look at my babies, think of yours, and can’t imagine. But I can pray and hope and talk about it. And I will.

  15. 15

    Thank you for sharing your story! <3
    Michelle {Daydream Believers Designs}´s last blog post ..TUTORIAL: TRICK OR TREAT TOTE BAG WITH REFLECTIVE TAPE

  16. 16

    Wow. I can’t even imagine going through that. You’re right though. I thought epilepsy was basically the 30 second convulsions you see in movies and on TV. I’m glad you shared this and I will definitely be donating for Miss Jilly,
    Nikki´s last blog post ..Scootch (It’s a Verb)

  17. 17

    My daughter started her seizures right after her first birthday. They aren’t like your daughter’s in that they don’t last that long but our little girl can have anywhere from 1 to 10ish of them per minute. She is on adult doses of medicines and right now we are up to 3 different kinds. It breaks my heart every.single.time I give her them. I know I don’t understand the pain you go through watching your daughter. People think our daughter’s seizures aren’t a big deal either. It makes me feel so… I don’t know, overlooked? If that makes sense? No seizures are good seizures so it’s frustrating when people brush us off. In the same way, when I rolled our pickup truck down a mountain this weekend, people seemed to think it was no big deal because God blessed me in being able to walk away. It could’ve ended very different. Praise to Him that it ended this way, but there is still a lot of heartache that goes along with situations like this!

  18. 18

    I am new to the world of seizures and Epilepsy. Although I am a pediatric RN I had NO idea the details inside the life of a child/family with Epilepsy. My daughter was diagnosed this week..1seizure last month and 4 seizures this week. Only one seizure so far has been less then 5 minutes. Unfortunately I know the stupid SE initials, what they stand for, and heard the words that I HATE so much. I am in love with this blog and the fact that you are raising awareness. I am SO happy to have been directed here at a time of such discouragement! Thanks for your posts!!! GO TEAM JILLY!
    Gracie’s story is recorded here


  1. […] Our Roller Coaster {epilepsy} (liferearranged.com) […]

  2. […] a text saying “jilly’s in the ambulance.  please pray.”  jeannett wrote this beautiful, eye-opening post about how epilepsy is part of their lives.  go read it.  now. (i’ll wait here for […]