COME SO ALIVE

Finding breath and beauty amidst the storm

Category: Beauty in the Storm (epilepsy) Page 3 of 7

Be still

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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!”

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I AM THE WARRIOR!

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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?

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It’s the most wonderful time of the year!

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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.

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MINE!

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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 8th 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 40th 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.

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Hello, my name is…

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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?)

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Singing with God

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On 07/22/2022

In Beauty in the Storm (epilepsy)

“I thought for sure you’d end up at the Grand Ole Opry!” My great-uncle said this to me one of the last times I saw him. When I was three, we lived across the street from Uncle Ole (what I called him even though his name was Leo) and Aunt Betty, my grandpa’s sister.

One night a week, I’d use my parents’ cassette tape recorder, hold the little microphone up to the TV, and record the Donny and Marie Show. The next day I would take the recorder across the street to Ole and Betty’s house, play back the previous night’s show, and sing along with it and perform for them.

Not sure if I was any good but I had the heart of a singer.

Age 3 – big sister by day, singer by night

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Saying “Thank you”

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On 02/04/2022

In Beauty in the Storm (epilepsy)

Almost exactly three years ago, my husband and I learned that his heart condition that hadn’t changed in 16 years suddenly changed.  In a matter of six weeks, he had his (we thought) routine yearly imaging, we had two appointments with his cardiologist and then with the surgeon, and, finally, he scheduled open-heart surgery.

It was terrifying.  He was 51 – too young to need open-heart surgery!  But that’s where we found ourselves.

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Punching a hole in the darkness

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On 01/28/2022

In Beauty in the Storm (epilepsy), Light and Dark

Live where you are planted.

That was my takeaway from a Bible study called Stepping Up that I started almost 12 years ago.  It actually took me almost four years just to finish the study!  When I first started it, Cody was a few weeks old and I didn’t get very far – shocking, I know.  But one of the things I underlined was “The psalmist meant that he was a long way from home and from where he wished to be – that he felt like an alien.  Can you relate?”

YES!  I could relate.  We lived among mostly families with much older children than Cody and didn’t have any close friends in our own town.  Within two years, we decided to move to my hometown to at least be near family…a decision we tried to make a reality for another two years until we finally accepted it just wasn’t going to happen.

I started the Bible study again, randomly it seemed, and wrote words of the same theme:

“I am living in the wrong place.”

Yet within a few months, I wrote,

“I am where God wants me.  He wants to prosper me here.  My part is to live and serve where He has put me.”

Fast forward almost eight years and “Live where you are planted” has regularly popped into my head, not as a reminder of what to do but as I’ve seen the outcome of choosing to live that way.

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Sitting with sadness

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On 01/14/2022

In Beauty in the Storm (epilepsy)

I realized, a long time ago, that I was depressed – once someone pointed out to me that I was depressed, that is.  I talked to my therapist about medications, but she called it “situational” depression as opposed to clinical (chronic) depression.  She believed that, once the situation resolved, the depression would too.  I continued talk therapy and, over time, the situation changed and I pulled out of the depression.

Years later though, I still closely monitor where I am at when depressing hardships come.  But while depression is a reality, so is sadness.  And the two are not the same thing.  Too much grief can lead to depression but sitting in your grief does not mean you are depressed.  It does not mean there is something wrong with you, something that needs to be addressed and fixed immediately.

Grief means you are suffering.

And suffering just needs to be experienced.

Grief needs to be sat with for however long it sticks around and again during those times when it suddenly returns for a visit.

Fighting it, ignoring it, trying to rush it along – those things only make it more determined to stay and pop out when you least expect it.

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I had hoped to write a new blog post this week, but a three-day migraine put the kibosh on that. Then, I decided to write a short Lifeline Friday post about the various resources on Come So Alive but I wanted to update the Music page first. Two years ago, Mike Marcotte, a Twin Cities TV personality who also has epilepsy, asked to write about our life and how we’ve learned to live with adversity. I went to our story on his website today to copy part of what I said there to add to the Music page and instead realized his article was my post for the week.

I didn’t think I would ever share this story on Come So Alive because it feels really weird “promoting” my family, but as I reread the article, written at the start of the pandemic, I realized, sadly, we are still dealing with so many of the same fears and challenges. The start of 2022 doesn’t feel as hopeful as a new year used to because we don’t see an end in sight yet.

So, if you are feeling the weight of what we are living through pressing down on you instead of the hope of a new year lifting you up, maybe something in this article will help:

When adversity hits: how one family copes with a child’s health concerns

By

On 01/07/2022

In Beauty in the Storm (epilepsy)

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