Category: Beauty in the Storm (epilepsy) Page 4 of 7

Learning to fly with broken wings

On 12/17/2021

“Nature is much more disorder than order.”
Richard Rohr, Falling Upward

Twenty years ago, I went through something really painful. It was dark and depressing and it took me quite a while to realize it had been like falling into a six-foot hole. Just a hole only slightly wider than my body so right in front of my face was a wall of dark dirt – but I was too depressed to realize that’s where I was, that if I just looked up there was sun and life.

As I started to come out of the really painful time, maybe even as I grew into something more than I had been before the painful thing, a friend gave me a little figurine. She said it reminded her of me when she first saw it, because that was how I seemed to be as I recovered.

On the bottom of the figure is the word HAPPINESS.

Arms outstretched. Head tilted slightly back and face looking up. There are no eyes but you get a sense that that is where she would be looking.

There are also three little bluebirds perched on her arms. Bluebirds signify happiness, in case you didn’t know. Her face turned up, three little birds with wings outstretched resting on her outstretched arms.

Happiness.

Until the birds’ wings, one by one, started breaking off.

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.

The things I would have missed

By Carrie

On 11/21/2021

In Beauty in the Storm (epilepsy), Gratitude, Pay Attention

What did you think your life would be like as an adult when you were in high school? Did you have specific plans? Is your life filled with things you never could have predicted?

I remember an exercise in high school that instructed us to write out a timeline of goals for our lives, how we saw them unfolding. Schooling, marriage, kids. All the things we think will play out in our lives. I can’t say I followed that timeline of expectations very well, both by choice and by circumstance. All the best planning could not have predicted where I have ended up. Do you know the feeling?

I’ve been trying to learn to let go of planning and to just receive instead. (Yes, I know some of you are laughing – I’ll wait until you’re done).

One great way to do that has been learning about contemplative photography, whose principle is to not “take” shots, but rather to receive an image. Three times recently I have received an image but only in looking at the photo did I really see the whole picture.

I decided to avoid the highway and take the back roads to run errands one day. The greens and blues and peace of the little lake (which I’ve driven past for 20 years) made me stop and back up so I could photograph it. I posted it to Facebook with the caption, “I took the road less traveled.”

Somehow, I missed the fact that I included the side mirror in the image. I was kind of bummed about that because I really only wanted to see the lake. Then a neighbor commented, “I can see your past” and I really looked at the image captured in the mirror. That image was, in fact, my past – the road I had just taken, a road very much “less traveled.” A past that lead me to the beauty I was currently enjoying. That reflection in the mirror actually became my favorite part of the picture.

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.

LIFELINE FRIDAY – Gratitude…when you aren’t feeling it

By Carrie

On 11/05/2021

In Beauty in the Storm (epilepsy), Gratitude, Lifelines, Light and Dark, Pay Attention

Cody had a seizure Sunday night. His seizure-free period went from 51 weeks between seizures down to 10 weeks.

I’m not doing well this week.

I have so many things I want to write but what I finally decided on (what God recommended when I finally checked in with Him, maybe?) was a Lifeline post on gratitude. Because I’m not feeling very grateful right now.

Or maybe more accurately, I note little things here and there but I’m not really fully paying attention to them. And He wants me to pay attention to them instead of only paying attention to the sadness, frustration, and even guilt I’m focusing on instead.

Sadness and frustration about a chronic illness in your kiddo you can probably understand. The guilt is because my son is only having one seizure every 10 weeks. I know parents whose kids have that many by lunch. Every day. So, I feel guilty for feeling sad about something that in relation to others with epilepsy doesn’t seem that significant. Which of course I know my child having any seizures is significant but….and around and around I go.

So “gratitude” came to mind yesterday. Really focus on it. Watch for it, even search for things for which to be grateful. Not to pretend the bad doesn’t exist but to lift my gaze to the light shining all around me even in the dark.

Things like…

Blowing me kisses

By Carrie

On 10/24/2021

In Beauty in the Storm (epilepsy), Pay Attention

One of my pastors created a Facebook page called Contemplative Photography, a place for its page members to post their own photos. I learned about it almost a year ago and immediately joined the group. I am not a professional photographer nor is that a requirement for the group. The point of the group is to “receive” photos, a visual way to pay attention to God in your daily life and share it with others.

Last week at breakfast, Cody said, “Oh, look! Half the sky is gray and half is sunny.” If you had drawn a line down the middle of the window, one half would have been completely overcast with dark gray, misty cloud cover and the other half shining with bright blue sky and a few wispy white clouds. I quickly grabbed my phone and went on the deck to photograph it. I posted it to the Contemplative Photography page with this thought:

“Like life, some days we get sunny, blue skies; some days we get dark gray, cloudy skies. And some days we get a combination of the two. Maybe most days it’s a combination of the two.“

And I have thought about that combination – of blue skies and gray clouds – several times since then. I contemplated how glorious those brilliant blue, cloudless-sky days are. We had one just the other day, with almost unbelievable deep blues.

In the morning

By Carrie

On 10/15/2021

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

I am weary with the pain of Jacob’s wrestling
In the darkness with the fear, in the darkness with the fear
But he met the morning wounded with a blessing
So in the night, my hope lives on
Andrew Peterson, “In The Night“

“It’s so dark out! 😩”

I woke up two days ago and texted that to a friend at 7:13 a.m. And yes, I used that actual emoji.

October. Beautiful leaves. Bright orange pumpkins. Shorter, darker days.

And on that particular morning, it was not only predawn dark but pre-all-day-rain cloudy. Thus, very dark.

“Colors 10 minutes ago,” my friend responded 10 minutes later along with this picture.

LIFELINE FRIDAY – Creativity

By Carrie

On 10/08/2021

In Beauty in the Storm (epilepsy), Lifelines

Maybe the desire to make something beautiful
is the piece of God that is inside each of us.
Mary Oliver, “Franz Marc’s Blue Horses”

Want to know the secret to how I write blog posts? I listen. I listen to the messages that I receive in sermons, Bible studies, poetry, even social media. And when I get the same message multiple times in a week, I pay attention – and then I write.

Pretty uncreative, huh?

I never really considered myself creative, certainly not creative enough to develop a website, write blog posts, and design social media posts! And yet, that’s what I’ve been doing for almost a year.

And I actually really love it.

I originally wasn’t going to set up an Instagram account for Come So Alive. But as I developed the website, I had something in mind I wanted to include yet could not figure out how to make it work. Then I saw the Instagram icon that could automatically feed to the website and I realized that was exactly what I needed.

Because it turns out, I was creating Instagram posts in 2014 before I even had a personal account.

After Cody’s epilepsy diagnosis that fall, I found myself sitting in front of the computer adding Bible verses and song lyrics to pictures I had taken, many from a trip to Cape Cod in 2006. It was my lifeline in the storm, a little insert of color into a really dark autumn.

Then last fall once I started planning what I wanted to include in Come So Alive’s resources, I immediately thought of these pictures and wanted to share them in case someone else needed to see some color, read words of hope.

I have a whole folder on my computer of pictures I did this with, partly needing something to cling to but more so doing it without really knowing why I was doing it, just feeling a compulsion to create in my grief.

Riding the rollercoaster, Part 2

By Carrie

On 09/21/2021

In Beauty in the Storm (epilepsy)

I’m swept up in a story that I don’t want to miss
So I will rise up for such a time as this
FAITHFUL, “Rise Up“

I was swept up in a story I had no interest being part of seven years ago and, as I wrote last week, it’s been a rollercoaster ride with lots of ups and downs. But surprisingly, there have actually been some “ups.”

One of the ups of the ride has been hosting a fundraising concert for the last three years. Normally, we don’t attend evening activities because Cody has an early bedtime and we do not mess with it. But when it’s our concert to plan? We scheduled it earlier in the evening, from 6-8 pm so Cody could attend the whole thing and still get home close to his normal bedtime.

But even that was stressful, because it’s still later than he usually goes to bed. Factor in two years of planning amidst the unknown of what a concert looks like and having to adjust due to covid, and planning this year’s concert wasn’t fun for me – it was actually nightmare inducing. I can’t tell you the number of things I dreamt about that went wrong!

Once I realized my stress was actually about not getting Cody to bed at his normal time, I decided this would be our last concert. I even talked to my therapist about my anxiety and being done after this year. But instead of supporting me, she had the gall to say,

“What if GOD isn’t done with the fundraiser? What if it gets even bigger?”

“But I can’t keep doing this. It’s too stressful with epilepsy and too much work!”

“Then you need to find more people to help you.”

Sigh…

The night of our concert this summer, I worked the “merch” table (merchandise, for those of you who aren’t under 30) and was flooded with people! A friend even came behind the table when she saw the line. “I want to help. What can I do?” Her daughter then came behind the table and said, “I want to help too!”

The next day another friend who attended texted me, apologizing for not saying goodbye because I had looked too busy at the merch table. I offhandedly said I needed to find someone to help me next year and she said, “I’ll help!”

You need to find more people to help you.

Hhmmm… ok, but I’m not doing another evening concert. It has to be a Sunday afternoon from 3-5 p.m. (I thought to myself but maybe to God too).

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.