Wish you could see Wish you could know Can you hear My voice Through the winter cold?
Matt Hammitt, “Even Though”
Almost ten Decembers ago, through the winter cold, I heard a verse I’d never heard before from a book in the Bible I don’t think I’d ever heard of either. Our pastor asked our family to read this verse and light the candle on the Advent wreath at the start of the service one week. My husband read Habakkuk 3:17-19:
17 Though the fig tree does not bud and there are no grapes on the vines, though the olive crop fails and the fields produce no food, though there are no sheep in the pen and no cattle in the stalls, 18 yet I will rejoice in the Lord, I will be joyful in God my Savior.
19 The Sovereign Lord is my strength; he makes my feet like the feet of a deer, he enables me to tread on the heights.
The service was about six weeks after Cody’s epilepsy diagnosis, six weeks of walking in a fog from the diagnosis itself as well as lack of sleep from listening for nighttime seizures. (And it just dawned on me that the pastor maybe chose us to read this verse because of our new reality…I’m a little slow sometimes…)
Regardless of the intention behind it, I heard this verse and it grabbed me:
“You’re speechless! I don’t think I’ve ever been around you when you didn’t have something to say.”
“Ha! I’m not sure I like what that says about me.”
I hadn’t planned to write a post today because it’s been a long week, and I just didn’t have much to say. Then the executive director of the Epilepsy Foundation of Minnesota called me – and suddenly I was both speechless and had so much to say that I had to write a post!
I’ve worked with Glen a lot in the last three years, so it wasn’t strange to get a call out of the blue from him.
What was strange was his saying, “Someone just gave a donation in Cody’s honor. Were you aware of that?”
Um, no. No, I wasn’t. I clarified that he meant recently, and he said yes, just in the last week.
“No, I didn’t know that. That’s great!”
He sort of paused so I thought he was going to go into a different topic…except he shared with me the amount of the donation.
You know those cute otters on social media, floating on their backs and reaching out to hold…well, paws? Have you seen that one? It’s adorable.
Then there are the social media stories by parents of children with epilepsy talking about several days of administering rescue meds. Rescue meds are valium-type drugs given to stop seizures that have no intention of stopping on their own. Seizures that become a medical emergency.
When my website crashed a few weeks ago, I began to wonder if it was time to let it go. Not stop writing, because I can do that directly to Facebook and Instagram, but let the website itself go…because, really, I’m the only one who looks at it. It’s a creative outlet for me to design the font and photo layout for each post, but maybe that was time I needed to start focusing elsewhere.
So, I started evaluating my personal and blog social media accounts, which have evolved over the last two years. This was an unexpected pause, but it gave me a chance to stop and plan how each account should look. I lost count of the number of edits I made to my personal Instagram profile because to say my writing is eclectic is a bit of an understatement.
I fixed ComeSoAlive.com but I still wondered if I should keep it. I wondered how to “market” Come So Alive, especially in a world of social media-worthy pictures and the right hashtags, neither of which I excel at.
Then I reread one of my very first posts, “My Armor for fiercely facing the storms of life.” Someone I had just met asked for a sample of my blog posts, and I knew I wanted to include that one because it explains why it’s called Come So Alive. I opened it to send her the link…and read my own words for why I write.
“I woke up and had the thought,
’I should start a blog.’
‘I hate blogs. Why would I write one?’
‘To share hope and light the path for others,’ came the reply.”
Huh. I had forgotten that in the last two years.
Then the pieces fell into place. I don’t write to cover a certain topic. I write about where I find hope and beauty so I can remember them, so I can hold on to them. Because I forget. Regularly.
The last five years have taught me to be mentally prepared for bad things to happen.
Oops, sorry, we misread Cody’s MRIs for the last three years. He has a different kind of epilepsy, one which not only will he not outgrow it but he will need brain surgery for it.
Oops, I was wrong four years ago when I first met with you, Chuck. You do actually have a genetic issue and it’s likely what’s killing your family members. You need to have it monitored and will need open-heart surgery at some point.
And yes, those are mostly direct quotes – no candy coating going on with either doctor.
We heard both of those about two months apart. One year later we heard it was time to start brain surgery assessments and then time to have open-heart surgery.
A few months later, we had a flooded and destroyed formerly fully-finished basement. Then a job loss a week before open-heart surgery.
Another open-heart surgery less than three years later. A stroke.
So when something went wrong last week with the website I have spent over two years creating…well, of course it did.
Except I’ve taken it relatively calmly, after the initial panic.
I mean if someone hacked and destroyed my site, they are way more technically savvy than I am and there’s really not much I can do about it.
I still haven’t figured it out. So, Come So Alive might look a little different this year. Or maybe not.
I guess we won’t know until we get there.
Which is how life is anyway so perhaps that’s fitting. Maybe even that’s the lesson God wants me to learn this new year.
You’d think I’d have learned that lesson after the year of stroke we’ve had, but, no, I went to bed last night wondering about the future…
“You won’t know till you get there, Carrie, so stop trying to figure it out. To guess. To prepare. You can’t prepare. No matter how much you go over projections and possibilities in your head, you’ll never be fully prepared for all life brings.
“But you can let Me walk next to you, you can slow down and walk next to Me, so that when you get there, you get there with Me. And I AM all the preparation you’ll need.”
So instead of thinking ahead, I decided to look back. I scrolled through my photos on my phone from the last year and rediscovered these beautiful sunsets.
Do you know that Jewish days begin at sunset?
“While a day in the secular calendar begins and ends at midnight, a Jewish day goes from nightfall to nightfall.”*
As I post this, the sun is setting. Another new day is starting. And I can try to prepare for the bad I’ve come to anticipate.
Or I can simply enjoy the sunset closing out today, knowing no dark night lasts forever. Tonight’s sunset will usher in a new morning – and He will be there.
I woke up to my husband cooking a lovely breakfast of pancakes and bacon – and then spent the rest of the day either teary-eyed or awestruck. Don’t get me wrong, the breakfast was great.
What brought me to tears was seeing our story shared with 20,000 others on social media first thing this morning as I was eating that breakfast. You see, I was the guest blogger for Kelly Cervantes’ blog “Inchstones by KC” today. She and her husband, Miguel (Hamilton star), lost their daughter to a very severe form of epilepsy. Prior to Adelaide’s death, Kelly started a blog documenting their journey. She recently asked for guest bloggers to share their own stories. So, I sent a sample – and she published it!
What also brought me to tears throughout the day was the fact that people were commenting on her post…on my post. I have to admit I was quite nervous last night knowing she was publishing it today. Would anyone even read it? They follow her after all, not me.
But people read it. And commented on it. All day long. They’ve commented on how little pieces of what I wrote resonated with them, whether their lives were impacted by epilepsy or another medical issue like their child’s cerebral palsy, open-heart surgery, or stroke.
People are commenting on something I wrote? I can’t quite comprehend that.
And what brought me to tears was reading comments that resonated with me. Comments that I needed to hear today.
Comments like, “I always hover between worlds of gratitude and defeat.” Yes, I feel that way!
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.
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 8th 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 7th 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.
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 15th. 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.
“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.
