Blog - Page 5 of 13 - COME SO ALIVE

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

Anticipation, Part 2

By Carrie

On 10/28/2022

In Beauty in the Storm (epilepsy), His Vast Strength (stroke)

I woke up Sunday morning reciting a verse in my head: “He has sent me to bind up the brokenhearted.”

I have a reminder on my phone so that verse, Isaiah 61:1, pops up every Sunday morning, but this week I thought about it before I even reached for my phone. Actually, I know that verse so well that I don’t really need the reminder to know those words. I have lived those words.

Last week, I wrote about anticipating my peonies popping open every spring. Lately though, I’ve been anticipating another yearly event, although I guess dreading it is the more accurate way to describe it.

You see, Sunday was the 8^th anniversary of Cody’s epilepsy diagnosis.

My greatest joy was born in October.

Four years later, October ushered in my greatest heartbreak.

Obviously, I knew it had been coming for…well, since the 7^th anniversary. But this year, we had scheduled our fourth fundraising concert on the same day so at least something good would come from something bad.

But once the planning and preparing were finished, I spent a day depressed. Because no matter how much we were eagerly anticipating the concert, the dread of facing one more anniversary and starting one more year of epilepsy also loomed ahead of us.

Anticipation, Part 1

By Carrie

On 10/21/2022

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

I anticipate with excitement a certain day of the year, every year. I can’t tell you what day it is, though, because I don’t actually know. To be more specific, I don’t ever know the exact date until the day it happens but the event that I anticipate, that I can tell you, I love the day my peony opens! Or peony, depending on how you pronounce it.

That day also happens to be a day I dread, because it rains that day and beats down my beautiful peony blooms, light pink, double blooms as big as my hand on tiny little stalks. It rains that day. Every. Year.

This year the gloriously painful day was June 15^th. I know the exact date because I took pictures of the bloom. It was sunny in the morning when I awoke to several massive blooms that had popped open overnight – but by 11:30 a.m. the sky had turned cloudy. I decided to take a picture so I could enjoy their beauty longer, knowing they would only survive a day or so.

As I squatted in the dirt so my camera was even with a bloom, thunder clapped somewhere in the distance.

Seriously, I’m not making that up.

Smiling for the camera

By Carrie

On 10/07/2022

In Finding Breath, Peace

I went on vacation this week. Well, a staycation. Ok, I spent a few hours relaxing on my deck. But I nursed three mugs of tea and just sat. It was amazing!

…

I have tried for ten minutes to figure out what to write. I type, then I delete. Because, I finally realized, that morning was so relaxing that I just really can’t write about it. Writing about it feels like it makes it work and that morning was not about work at all.

So, I’m going to share a few of the pictures that I took over the course of 2 1/2 hours of sitting on my deck – a very quiet, still time that calmed my body and started to restore my soul.

I enjoyed just being present to what came into my backyard. To the little gifts God sent my way that morning. I hope you find a few moments of peace as well. And maybe a chuckle about the squirrel that Cody thinks was smiling for the camera.

The secret of the healing power of beauty is learning to receive it as a gift.
John Eldredge, “Get Your Life Back“

“Look! He’s smiling!” said Cody when I showed it to him.

I finally captured an upside down nuthatch!

Be still

By Carrie

On 09/30/2022

In Beauty in the Storm (epilepsy), Peace

“And just like that, it’s gone! I’m sad – that was beautiful,” said Cody, commenting on the gorgeous sunrise this morning.

It didn’t start so great as he sat at the kitchen table while it was still dark outside. Suddenly, there was a huge flash of light. “Lightning?” he said. “Well, it’s not supposed to“ BOOM!! “rain today…,” I said.

Ok, apparently it may rain today. Sure enough, as the sky lightened, we saw rain clouds over us. We also saw an amazing pink sky that was making our backyard and even our living room pink.

I took a picture and then, as the color changed ten minutes later, another picture. Ten minutes after that, Cody opened the east-facing front door and the colors were gone.

As we were on our way to school, we turned east and faced straight into the sun breaking through the clouds. Cody commented on that beautiful sight too.

“We aren’t storm chasers – we’re cloud chasers!”

The fings I need

By Carrie

On 09/23/2022

In Gratitude

No, that’s not a typo. It’s how Cody said “things” when he was five. Or more accurately, it’s how he sang “things” when he was five.

I needed to do something a little mindless one afternoon this week so decided to download some of my pictures and videos from my Google backup (I keep getting “FULL!” messages from them so it’s time).

The oldest item in my Google Photos account was a video from April 2016. Cody learned a song at preschool which we had been singing as grace at meals. Thankfully, one morning at breakfast I decided to record it.

He didn’t quite remember all the lyrics, but the video was adorable! Five-year-old Cody singing? Oh, my goodness! I’d forgotten how little five looks…and sounds. Just what I needed.

"Thank You, God, for giving me the fings I need
The sun and the rain and the apple seed
Amen. Amen. Amen, amen, amen.  Amen!"

The thing is I realized that it was, in fact, just what I needed that day. As I played it a second time, the words sank in and I heard God talking to me from a six-year-old video and a five-year-old boy.

Breakfast in bed with a side of lament

By Carrie

On 09/16/2022

In His Vast Strength (stroke)

Still in bed and propped up against pillows one Saturday morning, I read my daily devotional a few weeks after Chuck was discharged from the hospital and inpatient stroke rehab. The plan was a study on the book of Ruth, and that day’s reading began with this:

“Naomi has experienced a great deal of sorrow and loss in her life, and she is in a very dark place. She doesn’t understand why God would allow all this tragedy to happen.” Love God Greatly: Ruth, YouVersion plan, Day 5.

And I thought, “Amen, sister!”

(In case you aren’t familiar with that book, Ruth had lost her husband and her adult sons, which, in that time and culture, meant she had no one to take care of her anymore.)

I next opened Instagram to see if something could lift my spirits – and encountered this post from the previous day:

“When the world as you understood it falls apart, God’s invitation to you is to lament. Lament consists of two things: allowing yourself to feel your sorrow, and then expressing that sorrow.” Adam Young, quote from the “Why Lament (Surprisingly) Leads to Life and Freedom” podcast.

Lament. Yes, I can relate to that.

Then Cody walked in with a big smile and a plate full of pancakes to treat me to breakfast in bed. And, of course, my dark mood lightened.

But, after breakfast, I started asking God how to keep writing for Come So Alive when I wasn’t feeling that way now, feeling “so alive.” How did I give people hope when I barely had enough for myself?

I AM THE WARRIOR!

By Carrie

On 09/09/2022

In Beauty in the Storm (epilepsy)

If you are of a certain age, I’ve just triggered Patty Smyth singing, “Bang bang!” in your head. You’re welcome.

If you have no clue what I’m talking about, I’ll wait while you find it on YouTube (“shooting at the walls of heartache”🎵🎵).

Actually, this isn’t a light post but that song came to mind so I decided to share the torment.

A friend’s daughter watched Cody recently when Chuck and I had to be gone for four hours for a stroke assessment appointment. As I dropped her daughter off at her house, my friend came running out her front door, “You can’t leave till I talk to you!”

I hadn’t seen her in many months, since before the stroke.

We talked in her driveway for an hour, about the stroke and about the recovery. About how hard it had been. About things that made me cry in front of her.

At one point, she told me I was strong, “stronger than 95% of the people in the world.”

But no, I’m not strong.

I mean, I was standing there crying – how is that strong?

It’s the most wonderful time of the year!

By Carrie

On 08/26/2022

In Beauty in the Storm (epilepsy), Gratitude, His Vast Strength (stroke)

It’s the most wonderful time of the year
With the kids cannonballing
And everyone calling, Happy Birthday, dear
It’s the most wonderful time of the year

I love my birthday. I love opening presents. And birthday cake – don’t forget the cake! Or, as I woke up to this year, fresh out-of-the-oven chocolate chip cookies for breakfast.

I love my birthday.

It’s in August and I love summer so maybe I just love having something to celebrate this month. Or maybe August is my favorite month because it’s my birthday. Regardless, I still enjoy birthdays, even after almost 50 of them!

A friend’s birthday is the day after mine so we started celebrating together several years ago. A little playdate (and cake – don’t forget the cake!) with our kids and some other friends at a park. Or time at the local beach – again with friends and kids and cake.

Another group of friends, called the Birthday Club, gets together…well, for our birthdays. For my birthday this year, several of us spent a sunny, summer Sunday afternoon at a restaurant, eating and talking for almost three hours.

Then, of course, there’s the August celebration with my family because my mom’s birthday is August also. So, that was earlier this month. And finally celebrating with Chuck and Cody on the actual day. Which, this year, began with the previously mentioned “breakfast cookies” as Cody called them and ended with pizza on the beach for supper and Cody doing a “6th grader cannon ball!” off the dock. And there were texts and Facebook posts and emails from friends and family all day long.

After all of these people had thought of me, took time out of their day, and sent me birthday wishes. After God spoke to me all day long through all of those people, telling me over and over again, “I love you, Carrie.”

After all of that, I told God this morning I was disappointed with what He’s given me.

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.

COME SO ALIVE

Finding breath and beauty amidst the storm

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

Other resources:

Anticipation, Part 2

Anticipation, Part 1

Smiling for the camera

Be still

The fings I need

Breakfast in bed with a side of lament

I AM THE WARRIOR!

It’s the most wonderful time of the year!

MINE!