Tag: epilepsy Page 1 of 2

Normal, Not Normal

On 11/20/2023

I received a Facebook notice last weekend that I had a memory to look back on. Oh boy! Looking forward to something cute or funny, I clicked the notice and saw this post:

Oh. That’s right. Just an EEG. Nothing fun or cute or exciting. Except in rereading it, I realized I had caused some excitement for our friends, but not the good kind. More accurately, I had freaked out my friends who thought something bad had happened to Cody because he needed an EEG.

The thing is that EEGs are normal for us. Cody doesn’t remember a time when he didn’t have to have regular EEGs. I’m starting to not remember it either.

Epilepsy is chronic. Even if medication controls the seizures, epilepsy doesn’t usually go away. In general, there is no cure for epilepsy.

Once it’s your new normal, it will likely always be your new normal. Which means abnormal electrical activity becomes normal. EEGs become normal. Regular hospital stays become normal.

This month is Epilepsy Awareness Month – and I am so sick of epilepsy that I had planned to take a break from posting about it. But when it’s your normal, you never get to take a break from it.

Cody was invited to a birthday party this summer…which coincided with an overnight EEG. Fortunately, the party was a sleepover so started later in the day and Cody was discharged from the hospital in time to attend, the supper and gift opening part of the party at least. (He can’t do sleepovers…because abnormal electrical brain activity…that causes seizures especially with lack of sleep…)

Before we knew what time the party started, he had texted his friend group that he may or may not be able to attend because of an EEG. Again, freaking out of friends occurred. All the boys on the thread responded, some asking if he was ok. Two responded with information they had researched to better understand EEGs and share their new knowledge with the group (💜💜💜).

But they were all concerned – because an EEG is serious. It is scary. It is not what most people ever have to deal with (thankfully).

Yet it is our normal. Seeing my old Facebook post reminded me of something I have forgotten over the years: adjusting to a “new” normal doesn’t make it normal.

*****
1 in 10 will have a seizure in their lifetime. Click here to learn about seizure first aid:
https://www.epilepsy.com/recognition/seizure-first-aid

Afraid of storms

By Carrie

On 10/27/2023

In Beauty in the Storm (epilepsy)

I am not afraid of storms,
for I am learning how to sail my ship.
Louisa May Alcott

Nine years ago, just weeks before we heard, “Cody has epilepsy,” I started writing. I didn’t actually know WHY I was writing, wasn’t sure if it was a book or maybe just a new way of journaling, and didn’t intentionally sit down to write.

The words just came out of nowhere and I had to write or type them as quickly as I could.

Months turned into years…of seizures…and of writing.

At one point, I added a title page to the Word document that had grown quite large: “Beauty in the Storm.”

But it took many years to be able to see any beauty. Or rather, to be able to see the beauty that had existed throughout but was easily overshadowed by the storm.

Two months ago, we hosted a concert to mark the 10th anniversary of Cody’s first seizure. As I introduced the singer, I was brought to tears while sharing the beauty God has added to our journey. I listed several things with no difficulty but barely managed to speak when it came to sharing about the people we have met – people we have met only because we’re all in the epilepsy storm together.

“Amazing people who, if I had never met them, I think I would have felt an ache from their absence but never known why,” I struggled to say as the truth of that sentence overwhelmed me.

A storm so intense I wasn’t sure I would survive it overcome by beauty so unexpected I could never have envisioned it. I would never have chosen epilepsy but given the chance now, I don’t think I would wipe it from our lives. The beauty in the storm is too precious.

Last week, we spent 5 days in Tennessee for a family wedding and some sightseeing. We stayed in a cabin in the Great Smoky Mountains for one night…and were awoken by the fiercest downpour I’ve ever heard.

Not to be outdone by mere rain, a flash of light lit the bedroom and I thought, “Uh oh,” a second before a thunder crack seemed to BOOM from the backyard and reverberated back and forth against the mountains. It was just a little unnerving but I also almost laughed, it was so shocking…so unexpected. So beautiful.

The one day we planned to spend exploring the mountains began with a thunderstorm which turned into mist, gorgeous mist blowing and billowing and literally crawling up the sides of the mountains.

Later, our drive up to the tallest peak included rain, thunder, mist, and sleet. Our hike to the very top pelted us with hail in the 40-degree air and buffeted us with wind gusts so strong Cody had to grab a railing on the final ascent.

And we laughed. Cody walked in puddles and posed with virtually every tree we passed.

We asked, “How much farther?” of people walking down as we struggled to walk up the path to the 6643-foot peak – and then cheered on others as we hiked down: “You’re almost there. Keep going!”

I shared knowing smiles with several other equally exhilarated hikers. “Bring it on, storm! I can beat this.”

The storm obscured the view from the mountaintop but what we experienced within it was so unique. So unexpected. So beautiful.

Would the view have been stunning in sun and blue skies? Of course. But if that day had been clear, I think I may have felt an ache from the storm’s absence but never known why.

Note to self: you don’t need to be afraid of storms.

Clingmans Dome, Great Smoky Mountain National Park

Imperfect Perfection

By Carrie

On 09/29/2023

In Beauty in the Storm (epilepsy)

Hurricane Cody. Octopus on speed. The Little Dictator.

To say Cody has been a handful is an extreme understatement, as those nicknames that we’ve given him (starting at about 5 months of age and into toddlerhood) testify.

My husband and I also frequently say that while we may only have one child, we are having the full experience. And I realized this morning: I really am.

I shared this photo early this morning with another social media mom who also has a son with epilepsy and ADHD (as well as autism). She had posted a photo of herself standing behind her two sons with a hand on each of them. The caption read,

“How do you recognize the mama of a child that had autism, adhd, and is a constant flight risk? Look at how they’re positioning their hands on their kids for pictures. 🤣”

Which made me laugh because I have been there so many times that, before I even read “constant flight risk,” I thought it. Yes, those exact words.

Constant. Flight. Risk. Oh my.

(Note the FULL ARM wrap I’m utilizing to capture “The Hurricane” for the photo.)

I didn’t necessarily laugh in the moment but, reading that post and thinking back, I can definitely laugh at the struggle now. Maybe being able to share it with someone else makes it easier to laugh.

And Chuck and I have laughed day after day for over a decade about something Cody has said or done. Years later, we still laugh about some of those things.

Yet, I’ve also cried more in those years than I ever thought I would, from fatigue, fear, and even anger at our life’s situation.

It seems impossible that something that cuts out a little part of me could also make my life so full.

I guess a life doesn’t have to be perfect to be perfect.

Why I wear purple hair (& how to save a life)

By Carrie

On 11/04/2022

In "Come So Alive" Origins, Beauty in the Storm (epilepsy)

As I’ve mentioned recently, I’m almost 50. Fifty-year-olds probably shouldn’t be dyeing their hair. Well, not purple at least.

The picture I chose for Come So Alive’s “About” page shows me with a full head of intense purple hair. I wore purple hair for the first time on the day of our 2020 fundraising walk for the Epilepsy Foundation of Minnesota – which was cancelled due to covid.

More specifically, the large, Twin Cities’-wide walk was cancelled. EFMN suggested individual teams walk around their neighborhoods, inviting others to join them and raising awareness through yard signs and chalking sidewalks (Remember chalking sidewalks in covid? Someday people won’t know what that means).

Our team of two families decided to meet another family new to epilepsy at a county park with lovely hiking trails. We all wore our purple epilepsy shirts, the moms painted their nails purple, and, for some reason, I wanted to dye my hair purple.

I’m still not sure why.

But I found a spray that washed out on the same day it was used and so bought a few cans to take to the park.

As the families congregated, I pulled out the spray cans, explaining I wanted a swipe of purple on my bangs and down the side. My friend’s husband’s eyes grew huge as I explained I had enough cans so we could all spray our hair purple. I’m sure he went home grateful to be married to her that day and not me.

As it turned out, five of us sported some purple hair for our hike. I was the only adult.

The picture my husband took of my swipe of purple got so many “likes” on Facebook that I thought I must be on to something. The next day I created a Facebook fundraiser for EFMN, offering to spray all of my hair purple and attend our city’s upcoming pumpkin festival – and take pictures to post to Facebook.

Shockingly, I exceeded my goal. Friends were thrilled to embarrass me…I mean, support a good cause.

I have worn purple hair in public for three years now as friends have continued to support our yearly fundraiser.

And by supporting that good cause, those friends are supporting us. They are supporting my son as he grows up with epilepsy, maturing faster than other kids because he has to manage meds and sleep and missing out on evening activities with friends.

I wear purple hair so he doesn’t feel alone in epilepsy and so he is never ashamed or feels he has to hide it.

I wear purple to bring awareness to a disease that is often hidden and largely misunderstood.

It’s Epilepsy Awareness Month, but if epilepsy isn’t part of your life, do you really need to be aware of it? Well, 1 in 10 people will have a seizure sometime in their life. Would you know how to respond?

If you get nothing else from my blog posts, please remember this:

>>For a convulsive seizure, never put anything in someone’s mouth. Yes, it sounds like they are choking or will break their teeth. They won’t choke unless something is put in their mouth and what is forced in their mouth can damage teeth more than the seizure itself.

>>Make sure they are lying down, something soft is under their head, and roll them onto their side. People often can’t swallow during and/or may vomit after a seizure so being on their side can prevent them from aspirating fluid.

>>No matter the type of seizure (there are many like staring or lip smacking), stay with them until the seizure ends.

>>If the seizure doesn’t stop within 3 minutes, call 911.

>>If they turn blue, don’t regain consciousness after the seizure stops, or another seizure starts, call 911.

>>If you are scared spitless (because they still terrify me even 8 years later), call 911. EMTs are trained to assess if the person needs medical assistance.

>>Most seizures are not life threatening. But some may be.

There, now you are epilepsy aware.

So, I wear purple hair because it’s noticeable.

And maybe by noticing it, you’ve read this post.

And maybe someday, because you’ve read this post, you can respond to a seizure and possibly even save a life.

Because I wore purple hair.

Click the link for a downloadable seizure first aid chart.

Other resources:

Epilepsy Foundation of America

Epilepsy Foundation of Minnesota

CURE Epilepsy

MINE!

By Carrie

On 08/19/2022

In "Come So Alive" Origins, Beauty in the Storm (epilepsy)

Or as my niece used to say, “Miiiiiiiiiinnne” with big, blue eyes and a small, plaintive voice. I swear, as a two-year-old, she had a whole legal argument in that one long, drawn out word.

Almost a year ago, I wrote about reclaiming the 8^th anniversary of Cody’s epilepsy diagnosis on October 23, 2014, by hosting our fourth fundraising concert on that day this year, but, really, we had started riding the epilepsy rollercoaster August of 2013 – we just didn’t know it yet.

Cody’s first, out-of-the-blue seizure was on my 40^th birthday. Well, technically, it was at 2:00 a.m. the day after my birthday but close enough.

Because the ER doctor that night thought the seizure was provoked by a fever, we didn’t get an accurate diagnosis for another 14 months (and two more seizures).

There have been minutes in the last eight years since hearing, “Cody has epilepsy” that were unbearably, painfully long, where I literally had a hard time breathing, and yet the years have gone by in a breath.

If I knew then what the epilepsy rollercoaster was going to be like and how long it would last, I would have spent those years living in terror instead of living each day growing in strength. Each day since then was needed to get me to today. Carrie at Day 1 wasn’t able to do this for eight years. But each day has been like training, making me a little stronger. . .and a little stronger, so Carrie today can do this for eight years.

I don’t want to but I can.

Hello, my name is…

By Carrie

On 08/12/2022

In "Come So Alive" Origins, Beauty in the Storm (epilepsy), His Vast Strength (stroke)

I wrote this for the ComeSoAlive.com “About” page almost two years ago as I designed a website for the new blog idea I had…the blog I didn’t really want to write. I also wrote it when our worst storm was my son’s epilepsy – before we knew a stroke storm was on the horizon…the storm I thought may be the end of my writing. But since deciding to continue writing from within this new storm, a lot of you have somehow found your way to this page. So, I thought it was time to introduce myself.

First of all, let me just say that I don’t normally have purple hair.

Secondly, I don’t like blogs (seriously). But I think I’m supposed to write a blog (seriously??).

Finally, if you join me on this journey, you’ll learn the beautifully bizarre story of how I ended up having purple hair (ok, it was just temporary but you still want to know, don’t ya?)

For this week’s post, a plog

By Carrie

On 06/10/2022

In His Vast Strength (stroke)

“What are those things that Chewbacca ate called again?” Cody looked at me slightly disgusted. “Porgs. And don’t remind me. That’s just so sad.”

Cody is a sensitive child. I think every day that I picked him up from preschool he had a dandelion, a twig, or a pine cone as a gift for me (I actually still have the pine cone collection in my car by the gearshift).

Chuck and I often hear him talking to bugs, “Hello. Who are you?” I heard that this morning actually. We had some weird bug in the house that I had unsuccessfully tried to swat last night. Cody found it this morning, used the fly swatter to scoop it up, and then opened the patio door and gently let it out.

Calling them his outdoor pets, he loves the birds in the backyard too. He was quite concerned about who was going to keep our bird feeder filled while we were at the hospital for his daddy’s surgery. Thankfully we have some very good friends!

Cody is so sensitive that he had a seizure three years ago the day of Chuck’s first surgery. Needless to say, we were quite worried about him surrounding this surgery too. That may have been the biggest stressor for us quite frankly. When friends asked leading up to the surgery how they could pray for us, we’d ask them to pray for peace for Cody during the surgery and good sleep at night at the hotel. He also sleeps very poorly any place other than his bed and consequently regularly has seizures when we travel – which we have pretty much stopped doing.

So, facing a 7- to 10-day stay was anxiety-producing to say the least.

Who you see

By Carrie

On 12/03/2021

In "Come So Alive" Origins, Beauty in the Storm (epilepsy)

I have been pondering two different things recently. One is that I wrote my first blog post one year ago. When the thought “start a blog” first popped into my head, my response was, “No!”

As I wrestled with that idea, I didn’t believe I’d attract many followers but at the same time thought maybe something I shared about my life would resonate with someone else. Probably just one “someone else.” So, I resolved to write for the one person who may read what I would write each week.

I have also been thinking about purple hair – because I currently have purple hair. More accurately, I have 3-4 inches of purple tips as a result of my incredible friends donating to a Facebook fundraiser for the Epilepsy Foundation of Minnesota. If donations totaled $1000, I would semi-permanently dye the ends of my hair purple. They raised $1101!

I have since actually dyed my hair three times. The first showed up only as a light burgundy color and didn’t really stand out enough to embarrass me, which, of course, is part of the reason people donated in the first place! The second time (with bleach) turned my hair purple but faded to pink in less than two weeks, and I had promised to sport purple the whole month of November. I took a picture after dyeing my hair for the third time to assure everyone that I was, in fact, staying a very obvious purple for the whole month (which is Epilepsy Awareness Month by the way).

So, I had these two separate thoughts floating around in my head until one day when they became one thought. I scrolled past this photo in my camera roll last week and realized she is the one person I’ve been writing for this last year. She’s the one person who has read everything I’ve posted, to the website, to Facebook, and to Instagram.

It’s time to let go

By Carrie

On 11/11/2021

In Beauty in the Storm (epilepsy), The Mystery of God

My view of the sunrise this morning. From my son’s hospital room. That faces west. Not how I envisioned seeing today’s sunrise yesterday. (After only four hours of sleep, it took me an hour to realize the reason the sun didn’t seem to be rising over the bluff was that I was facing west – even though I had known the whole time I was facing west. Just thought I’d share that…)

There’s a pandemic and nursing shortage. Hospitals are slammed. And the staff here is asking what else we need, if there is something else they can do for us.

Last night when we checked in, the hospital bed had a handmade fleece blanket on it for Cody to keep. The room number outside his door had a personalized sign with his name and a puppy dog stamp on it. A volunteer just came through with a free beverage & snack cart. A volunteer – amid covid!

This is an incredible hospital; we are very fortunate to live only 20 minutes from it. To even get a bed.

And I really hate being here.

Riding the rollercoaster, Part 1

By Carrie

On 09/14/2021

In Beauty in the Storm (epilepsy)

Won’t you take this cup from me
Cause fear has stolen all my sleep
NEEDTOBREATHE, “Garden”

As with any chronic illness, epilepsy is a rollercoaster. Some days are relatively smooth and even look like things are on the rise. Then suddenly you’re holding on for dear life as the support below you drops away and you find yourself plummeting straight down toward earth. Seizures cannot be predicted. The saying in the epilepsy community is, “The only thing predictable about epilepsy is that it isn’t predictable.”

For example, Cody’s first three seizures were each several months apart. Since then, he has had seizures back-to-back, just seconds apart. Most recently, he went 51 weeks between seizures. We were planning a joint 1-year seizure-free celebration with some friends whose son’s last seizure was the day before Cody’s last seizure. Ten days before the anniversary, she and I got the “where, when, how” scheduled . . . two days later, Cody had a seizure. We celebrated anyway – 1 year for their son and only 1 seizure in a year for ours, something that had never happened in eight years of seizures.

Eight years of seizures . . .

I can tell you the exact day and time of Cody’s first seizure. It was the night of my 40^th birthday. We celebrated with my family over supper and cake, then drove home. In the middle of the night at 2:00 a.m., in the middle of deep sleep, I heard Chuck saying, “I think Cody’s having a seizure!” He went to call 911 and I went to stand by Cody’s toddler bed – he was 2. I just stood there, not comprehending what was going on. I just stood there because how do you stop a seizure?

I just stood there.

Cody stopped seizing and I picked him up to take him to the bathroom. One of Chuck’s coworker’s sons had febrile seizures and that was the only thing I could think of that was happening to Cody. “He must have a fever,” so I took him to the bathroom to get a cool washcloth to wipe him down.

And I realized as I carried him that he wasn’t breathing.