Finding breath and beauty amidst the storm

Category: Beauty in the Storm (epilepsy) Page 5 of 7

LIFELINE FRIDAY – Honesty

A friend invited me to a daytime luncheon in a few weeks.  It’s a weekday when Cody will be in school so I could actually attend it…but Cody will actually be in school for the first time in 18 months, and I just want to rest in my quiet house by myself.

I asked God if I should attend even though my initial response was “No.”  The luncheon speaker was part of a recent collaboration called FAITHFUL of about 20 different Christian authors and singers writing songs and a book about various women in the Bible.  I’m sure it would good; I liked the project and would love to attend with my friend.  But 18 months of covid and Cody being home…  So, I asked God if I should attend this event.  And “Hannah” came to mind.  Which makes sense because that’s the woman this singer/author wrote about and about whom she’ll be speaking.

The Hannah who said this:

“I am a woman with a broken heart . . . I’ve been pouring out my heart before the Lord.”

1 Samuel 1:15

And I laid on my bed and cried.  Because that’s how I feel.  Because I just used that verse recently on Come So Alive’s Instagram page so it was still fresh in my memory.

Dance with Me today

“We tend to stay away from mourning and dancing. Too afraid to cry, too shy to dance…we become narrow-minded complainers, avoiding pain and also true human joy…While we live in a world subject to the evil one, we belong to God. Let us mourn, and let us dance.”

HENRI NOUWEN, Suffering and Joy

Cody met his favorite musician at a 5:30 pm Q&A one night before a show.  We attended only the Q&A because the show itself was past Cody’s bedtime. Staying up too late triggers his seizures, so we are very strict about bedtime. 

When I emailed the singer, Jason Gray, a month later, he remembered us and agreed to play a concert for us as a fundraiser for epilepsy.  He remembered us after the Q&A specifically because we hadn’t been able to stay for the show. 

Epilepsy prevented us from attending his show; epilepsy made us stand out to him.

LIFELINE FRIDAY – Resting by reposting…about resting

I sat in my doctor’s office yesterday crying, not because she was giving me bad news but because I was giving her frustrating news. I received my covid vaccination 5 weeks ago and have felt sick ever since – vertigo, nausea, headaches, low grade fever, losing weight because I can’t eat.

To be clear, I’m not opposed now to others getting vaccinated; I support vaccinations. I just should have known better than to do it myself. My body has reacted (overreacted) to every vaccination I have ever received. The worst was 13 years of migraines after 9 vaccines to travel to Africa. I have allergies and autoimmune diseases and several contraindications to the covid vaccine. But I listened to my rheumatologist and scheduled it.

Consequently, I have not been writing much for Come So Alive. I actually have a few ideas for posts but just can’t get my brain to work to write them.

I’m also worrying if I don’t post, you’ll stop reading me. What if that one person I write for loses interest? Then who am I writing for?!

Amid the frustration of my side effects and my lack of writing, I remembered my post from a few months ago about wanting to rest and not blog. How ironic that, now that I probably should be resting, I don’t want to rest but I do want to blog. I reread that post and think now it was meant for me, not a few months ago but me today. I wrote,

“So, this week’s post, this week’s lifeline in the storm, is the reminder to myself that, to come alive, sometimes you need to rest.”

And thus, today’s lifeline in the storm, for me at least, is resting by not writing a new blog but reposting my old one – about resting. If you missed it or need a reminder too, check it out here:

Resting in a Sunbeam

The joys of summer camp

What do you think of when you hear “summer camp”? Fun things, right? Games. S’mores. Bonfires and singing. Staying up late. For parents of kids with epilepsy, we think…well, feel is maybe the more accurate word…we feel anxiety. Morning and nighttime medication doses. Rescue meds (Valium to stop seizures that don’t stop on their own). When campers stay up too late, we worry about seizures, maybe in the lake while our child is swimming.

Enter Camp Oz and the Epilepsy Foundation of Minnesota!

Go barefoot – it’s in the Bible!

The temperature on Saturday reached almost 100 degrees!  Not what we normally expect in June in Minnesota.  By the time I ate breakfast, it was already in the 80s…so, of course, I had to eat breakfast outside. 

I decided I would spend as much as possible of the next 12 hours outside (I believe I’ve mentioned before I’m always cold so I never complain about summer heat).  I grabbed my food, phone, and journal and headed out to the deck.  After taking off my sandals and getting comfortable, I decided to rewatch a video from the Get Your Life Back study and laughed at the title, which I had missed the first time: “Get Outside.”

I can’t, He can . . . I’ll let Him

Confession:  I’m not really a morning person.  I don’t hate mornings and I don’t sleep in late, but I’m not terribly interested in getting up nice and early to catch the sunrise either. 

Once Cody’s seizures started, all while he was asleep, I didn’t sleep…  I would sort of sleep but the slightest noise woke me up.  Needless to say, mornings became even rougher.

Lost in the storm

It’s raining today.  As the saying goes, “April showers bring May flowers.  What do May flowers bring?”  Pollen.  At least in Minnesota.  Excuse me while I sneeze…

boy with an umbrella

Actually, April in Minnesota may bring snow showers!  Or just flat-out snowstorms.  A few years ago, we had registered to go bowling for an Epilepsy Foundation of Minnesota event 20 miles away…on April 14th…and drove in almost white out conditions.  We wanted to support them because they had been such a great support for us so we decided to brave it. 

Jesus Knows

I left my son in the hospital tonight.  He is four.  After a third seizure ten days after the second one, we scheduled an overnight EEG (electrodes glued to the head of a four-year-old for 24 hours) to try to identify where the seizures originate.

While waiting the three weeks for the appointment, he had a fourth seizure. 

Then this morning before the time that he usually wakes up, he had another one…on the day of the EEG.

Tonight, I left my small son in the hospital hooked up to electrodes all night.

This is not for you

I had a great shopping trip planned.  No, not to Madison Avenue in New York City.  I had Kohls Cash!

Kohls is a local department store.  When you spend a certain amount, you receive a coupon for $5 or $10…to get you to come back to spend even more, of course.  I had a $5 coupon and I needed some fleece-lined tights.  It’s cold here!  I had worn my new cute sweater dress the day before and realized I needed them.

I will always bless you more than you could imagine

Every blessing You pour out
I’ll turn back to praise
And when the darkness closes in, Lord
Still I will say, “Blessed be the name of the Lord”

Tree63, “Blessed Be Your Name

I sat down to write an entry in my journal one morning several years ago.  As I was typing this title, a song came on the radio with the above lyrics. “Bless,” “blessing,” and “blessed” popping up all at the same time…hmmm… 

I didn’t have anything exciting planned for the day that would make me think these words were fitting.  No new car or vacation planned that would seem like a blessing.  I wasn’t even sure why I had started typing those words for the title; they just flowed out of my fingers.

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