“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.
Worry is like a rocking chair: it moves you around a lot but doesn’t take you anywhere.
“Overcoming an Anxious Mind” Devotional, YouVersion App
“Three weeks in, three weeks out. Three weeks in, three weeks out.” I found myself repeating that in my head as I was face down, cheeks mashed into the little cutout on the PT table.
I have shoulder surgery scheduled in three weeks and I’m in a lot of pain. Even though PT didn’t heal the tendon, the ultrasound heat alleviates some of the pain so I’m continuing to go to appointments. Three weeks until surgery; hopefully, three weeks after that and the worst of the pain will be over.
As I drove the two miles home from PT on Wednesday, I passed three senior housing/assisted living/memory care facilities. I turned right next to one and I started wondering, “Where will I end up? How long can we stay in our house? Where will Cody be? Who can help us with our house?”
Are you sensing the worry? To reference that first quote, the rocking chair was a movin’!
We live in Minnesota. Minnesota has some serious winters. This winter we’ve had some serious snow. And we have to rake it off our house after each snow fall. Needless to say, that hasn’t helped my shoulder.
So when I started getting anxious about my future living conditions, it was with a torn shoulder tendon and snow and shoveling and roof raking in mind. (Have I mentioned I’m only 49? Yep, I’m worrying about something that will not likely happen for decades. Many decades.)
Amidst all that worrying, God has sent me multiple reminders this week to pay attention to what’s right in front of me instead. I actually read my daily devotional with the rocking chair quote right after I got home from PT…and my drive worrying about my living conditions 30 years from now. Then God sent this beauty:
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.
I try to avoid looking forward or backward, and try to keep looking upward.
Charlotte Bronte
“Happy New Year!” said Chuck.
“Yeah, whatever,” I replied.
Ok, I was going for the comical effect (mostly).
The new day, the new year, the opening of a whole new calendar. It didn’t look much different from the day before, the day I had seen the above quote about looking upward.
The day before, on December 31st, I had also finished writing out the whole chapter of Isaiah 40. My pastor had read the first verse on November 27th, the first day of Advent. Later that day, I thought, “Maybe in 2023, it’s time to memorize the whole chapter.”
See, I love the book of Isaiah. I have even memorized several verses from that chapter in particular. My favorite is verse 26:
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.
“Those who keep speaking about the sun while walking under a cloud are messengers of hope…”
Henri Nouwen
I left the hospital that night not knowing how the next day would look. Twenty-four hours after a massive stroke, Chuck was still intubated and sedated. Earlier that day, the ICU doctor had talked to me about a tracheostomy.
Two and a half months later, Chuck had outpatient follow-up appointments to try to figure out why he was the only person in 200 surgeries to have had a stroke after that specific surgery. Prepared for the 90-mile drive and an overnight stay, we all piled in the car again and headed out.
Cody doesn’t sleep well….well, anywhere, even at home…but he sleeps even worse in hotels. Poor sleep means increased seizures. So, having found a quiet room during out first stay in March, we requested that one again in May and thankfully checked into the same room.
The problem was that it was the exact same room. After unloading the suitcases, I walked to the elevator to take the luggage cart back down to the parking level. As the elevator doors closed in front of me, I had a momentary panicky thought, “Have we not left?!”
My brain knew, of course, that we’d been home for almost two months, but my body, in that moment, didn’t quite believe it. The trauma in my body overrode the two months of memories at home that my brain knew existed. It was like reality was the dream, and I was right back where I had been in March. (Yes, I know that’s PTSD.)
During the whole elevator ride down, I actually had to talk myself out of that thought, out of the panic attack.
Back in the room, I did some deep breathing and decided to enjoy the view from the sixth floor. Looking out the window, I saw cute 100-year-old homes with fully-leafed out trees. A beautiful, spring day in Minnesota.
Remembering the pictures that I had taken through that window in March, I opened my phone to review them, including one of a magnificent sunset I could only have seen from six stories in the air.
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!
Welcome to the season of Advent, which means “coming” in Latin. The Christian church designates the four Sundays before Christmas as Advent, a time of waiting for the coming of Emmanuel, another name for Jesus, a name that means “God with us.”
I received several notices of special Advent devotionals on waiting this year. Yet, I realized, this Advent for me is less about waiting for what is to come and more about recovering from what already came this year.
No, I’m not waiting for something this year. I’m needing to heal from all the waiting this year.
Then God gave me an unconventional Advent devotional. I purchased a book called God Is at Eye Level two Decembers ago, and on my shelf it has sat, largely unread. Until it called to me last week, and I reread the subtitle: Photography as a Healing Art.
Yes, that’s the Advent devotional I need this year.
I wasn’t sure how I would use it, but, as I paged through the book, certain phrases jumped out at me. The first being the very first thing written on the Introduction page, a quote:
“There are two ways of spreading light: to be the candle or the mirror that reflects it.”
Edith Wharton
Suddenly, I knew that was what I needed to photograph – and I already had the image in my house. For Christmas I set four pillar candles (don’t worry, they’re battery-operated) on an antique organ which has decorative beveled edge mirrors on the upper shelf. I tried framing the photo several ways and finally found the one that was the image representation of those words.
And now I knew how this book on photography was going to be my Advent devotional. And how it would heal me.
It was bound to happen sooner or later. Covid hit our house this week.
We had all still been wearing masks this fall despite the world around us seemingly going back to “normal.” I really didn’t want to get covid before our fundraising concert though and risk missing it, so at school, work, and errands we stayed masked.
We made it 2 ½ weeks after the concert, of going back to unmasked life, before Cody brought covid home from school.
Thankfully covid didn’t hit Cody harder due to his epilepsy nor did it cause problems for Chuck post-stroke. I got hit the hardest.
I’m actually typing from my bed, day 6 of being here. But I am feeling better.
I was so smeared for a few days that I barely got out of bed, so Chuck and Cody adjusted Cody’s bedtime routine. We always share what we’re grateful for from that day before we go to sleep; this week, we did it with Chuck and Cody sitting next to me in our bedroom instead of Cody’s.
The first night I was sick we said what we were grateful for, and they got up to leave the room. Cody walked to the door, then stopped and ran back to me, jumping on top of me.
“Healing hugs!” he exclaimed.
And he gave me a big, wraparound hug. He invented healing hugs after Chuck’s first open-heart surgery, being much gentler with Chuck back then than he was with me now, of course.
The next day he made me a get-well card. Cody loves birds so he drew a chickadee family in their nest. The littlest chickadee is on its back with its skinny claws in the air because it’s so happy that “mommydee” is healthy.
Awww.
It got me thinking about references to feathers and wings in the Bible.
How precious is Your lovingkindness, O God! Therefore the children of men put their trust under the shadow of Your wings.
Psalm 36:7
Be merciful to me, O God, be merciful to me, for in you my soul takes refuge; in the shadow of your wings I will take refuge, till the storms of destruction pass by.
Psalm 57:1
He shall cover you with His feathers, And under His wings you shall take refuge
Psalm 91:4
Jesus even uses this imagery when he says,
“O Jerusalem, Jerusalem, the one who kills the prophets and stones those who are sent to her! How often I wanted to gather your children together, as a hen gathers her chicks under her wings, but you were not willing!”
Matthew 23:37
God wants to gather us in and care for and protect us – isn’t that a wonderful image? To have the Creator of the entire universe wanting to pull me under His wing. That’s what I thought about when I looked at Cody’s drawing.
I found one more verse about feathers and wings when I looked up those words.
But to you who fear My name The Sun of Righteousness shall arise With healing in His wings
Malachi 4:2
Healing in His wings. And that reminded me of Cody launching himself on me to hug me, wrapping his arms around me and settling in to make me feel better.
I think Cody was on to something when he dubbed them “healing hugs.”
