Blog - COME SO ALIVE

Safety Net

On 03/22/2024

In Beauty in the Storm (epilepsy), Gratitude, His Vast Strength (stroke)

I recently discovered that I don’t like safety nets. Here’s why: if I need one, it means I’ve fallen.

We learned in February that my husband’s employer decided to terminate him while on medical leave, when they gave him a 2-week notice (yes, it was technically legal). The earth dropped out from beneath me in an instant, and I lost my breath as I fell… hard.

How would we pay for our son’s very expensive epilepsy meds without health insurance?! Without the special exception I had worked for over a month to get on one of them in particular?

I cried for days trying to grasp what had just happened.

Two years ago, we had to mourn the new reality of my husband’s massive stroke. This year, we had to accept he just can’t work because of the stroke impairments. At least, we thought, we had the safety net of continued employer health insurance while on disability, for all of our health needs. For our son’s epilepsy meds.

But to have that pulled out from under us too?

For a week, I couldn’t sleep, with a continuous loop in my brain all night long of the things I needed to do but no idea where to start when daylight came. No ability to jumpstart a brain frozen with terror.

Several friends and resources kindly held me up and counseled, “Just take a step. Just do one thing to move forward.”

So I applied online to our state’s health insurance exchange site, just to start looking for options. My husband and I qualified for a plan but my son was denied – because he was automatically enrolled in Medicaid instead.

We also heard from several people, “You’ve paid taxes for decades – use every resource you can that is available to you now.”

I discovered one other thing recently: it’s easy to say that when you aren’t the one presenting the Medicaid card at the pharmacy or clinic. It’s harder – much harder, it turns out – to be the one holding that card and giving it to the pharmacist.

I was shocked at the shame, guilt, and embarrassment I felt the first time I used it. The sense of wanting to explain our situation and justify why I needed to use Medicaid.

After another multi-week battle, Medicaid approved covering the epilepsy meds. (Yes, he has in fact failed multiple other meds. Yes, the dual-fellowship-trained epileptologist does actually know what she’s doing…sorry, little snark oozing out there…).

We found a safety net again, one I’m still embarrassed to use. But one which I’m very grateful to have.

Reaching out

By Carrie

On 03/01/2024

In Light and Dark

“Hello darkness, my old friend
I’ve come to talk with you again…”

Is the melody to that song stuck in your head now? If you read my posts, you are probably old enough to know those are the first lines of “The Sound of Silence” by Simon & Garfunkel.

We’ve had some darkness descend recently and I’ve needed a break from reality. Thankfully, I signed up for a $.99/mo. Hulu special this year and discovered the show “Only Murders in the Building.” (We’re behind the times, what can I say?)

In one episode I watched this week, Manhattan loses power and the characters find themselves in the dark. At one point, two characters start singing “The Sound of Silence” with the windows open. Other residents of the apartment complex hear them and soon everyone in the building is singing, “Hello darkness, my old friend” together – even if they are physically alone.

Not surprisingly, this song has been stuck in my head for several days now. Partly because of the song, but partly because of the imagery. Hello, darkness…again.

I texted a friend an update earlier this week and she wanted to know if I needed a coffee date. She offered Friday morning. And if that didn’t work, she offered Saturday afternoon. And if that didn’t work, she’d get her work schedule for next week soon and we could plan something next week. She wasn’t taking “no” for an answer.

I accepted Friday morning – and then spent the next several days talking myself out of getting together. I didn’t have the energy. I’d be bad company. Maybe even I just wanted to pout in the dark, alone. I really should just cancel, I thought.

“Silence like a cancer grows”

Those words are also from “The Sound of Silence.” And while I didn’t have them playing in my head this week, a similar thought kept floating around as I contemplated canceling.

Ultimately, I did decide to take the hand reaching out to me this morning. I showed up for the coffee date and shared. Because I might be in the dark, but I don’t have to sit there alone.

“Hear my words that I might teach you
Take my arms that I might reach you”

This moment

By Carrie

On 02/02/2024

In Pay Attention

If stepping on a Lego is the pinnacle of pain as a parent, the dreaded bedtime routine is a close second.

How can it take 20 minutes to floss your teeth?

Deep breath, Carrie.

As I was saying, at least in our house, the bedtime routine is excruciating. Chuck and I are wiped out and ready for bed ourselves when suddenly Cody finds an energy reserve previously unknown to man.

And just wants to chat. And chat. And chat.

I have to admit, I haven’t always kept my cool.

Because really, how can it take 20 minutes to floss your teeth?!

I was too tired a few nights ago to ride the bronco (our expression for the bedtime routine), so took my phone and laid down on my bed to read an ebook while Cody flossed…because I had 20 minutes to kill.

Into my room walked Cody, talking around the flosser in his mouth. He climbed up onto my bed and laid down next to me, chatting the whole time.

At which point, it dawned on me just how lucky I am that my teenager still wants to be around me. That he just wants to chat during his bedtime routine. That he still loves to cuddle next to me.

I rolled onto my back and reached for Cody’s free hand. He then contentedly wiggled closer to me while flossing…and chatting.

Sometimes we take photos to document birthdays, weddings, or vacations.

A few nights ago, I decided to take a photo of my child lying next to me while he chatted and flossed. Because flossing only took mere minutes and then the moment was gone.

“We are not living in eternity. We have only this moment, sparkling like a star in our hand – and melting like a snowflake.”
Marie Beynon Ray

C’est la vie

By Carrie

On 01/12/2024

In Gratitude

Back up the crazy train! Actually, I backed up my shopping cart as the writing on the towel I had just passed registered in my brain. And then I laughed. Out loud. In the middle of the grocery store.

“Some days I think my life is being directed by Quentin Tarantino.”

Because, boy, did that sentence resonate a few days ago. Anyone else? (In case you are not my generation, Quentin has directed some…unique movies.)

Yesterday, a friend texted me about her child’s new plan at school to support a health diagnosis. She wrote that the “counselor seems really nice. I just have to laugh at the 504 plan though. Want to meet for tea one day next week and we can laugh together over life?”

Then she sent me a picture of the tag from her current cup of tea:

“Life may not be the party we hoped for but while we’re here we should dance.”

And that resonated too.

Five years ago, I would share the newest development in our lives with a friend who would then share it with her husband. His response multiple times was, “You can’t make this stuff up.”

And I feel like we’re living in that dimension again. “Life may not be the party we hoped for…” Indeed. I don’t think even Quentin Tarantino could make some of this stuff up.

“…but while we’re here we should dance.” When I saw a saying on a towel that made me laugh, I stopped to photograph it. When a friend wanted to laugh over tea, I gladly accepted. On the really hard days, I can’t do those things. On the really hard days, I definitely can’t dance. But most days? Most days I can dance. Like today.

_{Dance move a la John Travolta in Quentin Tarantino’s Pulp Fiction.}

Angel boots on the ground

By Carrie

On 12/08/2023

In Beauty in the Storm (epilepsy)

Cody bolted from my side, sprinted down the hallway to the Mommy ‘n’ Me group, and jumped through the door:

“I have SEA-zers!”

Because he was four and couldn’t say “seizures.”

Yet one of the other moms understood him. She gasped, grabbed her toddler onto her lap, and turned away.

I had made it to the doorway just in time to see this. Just in time for the Mack truck of fear and stigma to slam into my chest. I stood there as little pieces of my newly shattered heart rained down to the floor.

Then an angel stepped in front of me. Dazed, it took me a moment to focus on her and register that she was speaking to me.

“My best friend’s son has epilepsy. Would you like me to connect you two?”

I nodded, unable to speak.

That was our first public announcement that Cody had epilepsy, exactly one week after we received the diagnosis from the doctor.

I wrote last week about being hugged by a boy with autism and letting the parents know it was ok. I also included the mom calling me an angel – which resulted in multiple comments by several of you also telling me I am an angel.

But I didn’t write that to elicit agreement. I’m much too…spirited to be confused with a mild-mannered angel.

If I’m kind, it’s because I’ve been broken.

I said: What about my heart?
He said: Tell me what you hold inside it.
I said: Pain and sorrow.
He said: Stay with it. The wound is the place where the Light enters you.
Rumi

Being broken also lets the light out.

I encountered the boy and his family at a Christmas concert last week where we actually sang about angels, the ones who appeared the night of Jesus’ birth. Do you know this song?

Angels we have heard on high,
sweetly singing o’er the plains,
and the mountains in reply
echoing their joyous strains:
Angels We Have Heard on High

If you know that song, you likely also know it’s based on the Bible verse Luke 2:13: “Suddenly there was a multitude of the heavenly host with the angel…”

What we lose in the English translation, though, is what “host” really meant:

“angelic army”¹

“an army of the troops of heaven (a heavenly knighthood)”²

“a great assembly of the heavenly forces”³

“a vast army from heaven”⁴

“a multitude of heavenly soldiers”⁵

These were bad…um, badbum angels. This was a military presence taking back the dark.

One of my friends commented on last week’s post that, as parents of special needs kids, we are each other’s angels.

Maybe humans are meant to be “boots on the ground” angels for each other, regardless of our various struggles. It’s messy and mucky here on Earth though, so we need some heavy-duty boots and more than a little attitude. Hmmm.

A soldier with boots and attitude? Ok, maybe I am an angel.

1 AMP; 2 AMPC; 3 CEB; 4 CJB; 5 NMB

Behind

By Carrie

On 12/01/2023

In Beauty in the Storm (epilepsy)

“We’re here for a little window. And to use that time to catch and share shards of light and laughter and grace seems to me the great story.”
Brian Doyle

I stood in line waiting for the church sanctuary doors to open to the Christmas concert we were attending. Suddenly, I sensed something behind me then I saw hands moving over my shoulders and closing in around me.

“No, no, no!” someone frantically said behind me as the hands turned into arms…which hugged me.

I slowly turned, chuckling, thinking it must be a case of mistaken identity. Instead, I saw two adults grasping for their son who stood right behind me with arms still outstretched, their 11-year-old son who, they apologetically explained, had autism and just randomly hugged people. I saw two people so scared of my response that they huddled together around their child dreading my outburst.

And, in that moment, I had a choice.

“It’s ok,” I said, still more amused than anything…at which point their son quickly hugged me again and even kissed my shoulder. How could I be upset with that?

I started talking to them, just to let them know it really was ok. We talked about how their son loved music and this was his first concert. I shared that my son has epilepsy and ADHD so we could understand the effects of music and the difficulty with outings like concerts.

My saying that flipped a switch for the mom. She suddenly realized she wasn’t alone. I maybe don’t understand their specific struggles, but she realized I understood struggling.

“He only hugs certain people. You must be an angel!”

Which made me chuckle again as I’m pretty sure I’ve never been confused with an angel.

“Maybe I’m just exuding Christmas spirit,” I replied.

I could have faced forward immediately and disengaged, probably leaving them wondering if I was annoyed or angry. Possibly leading them to think (again), “We shouldn’t have come.”

Instead, I fully turned around and saw them, their hardship and strain and isolation…and shame.

We actually ended up leaving early because the concert was close to Cody’s bedtime. He decided he was just too tired to stay for the whole thing, which was a very mature decision on his part and I was very grateful for it as I had been dreading what a later bedtime may do to his seizure threshold. As we left, I leaned into the other mom’s row to explain and say goodbye. Chuck said she was beaming as I left. That’s all it took to make or break their evening, a response by a stranger to their son.

One morning out of the blue last spring, Cody asked, “When am I going to need surgery again?”

“We don’t know, any of us,” I responded (still recovering from shoulder surgery).

“No, I mean to de-epilepsify me. I will need it to get rid of seizures, right?”

“Yes.”

He turned to the window to look at the birds outside. Then, after a short pause, he turned back to me and said,

“Actually, I’d rather keep it so I can tell people about it. How am I going to help people if I forget what epilepsy is like?”

(Insert proud mama moment)

After meeting the family with a child who is 11 but tests cognitively as a four-year-old, I remembered that conversation with Cody.

“How am I going to help people…?”

Epilepsy sucks.

Just like autism sucks.

And like all the ways that our bodies break and betray us suck.

But holding out my bloodied palm and saying, “These are my broken shards of glass. What are yours?”

That’s how we help people and survive our brokenness.

Keep each other’s spirits up so that no one falls behind…
Ephesiains 6:18 MSG

Normal, Not Normal

By Carrie

On 11/20/2023

In Beauty in the Storm (epilepsy)

I received a Facebook notice last weekend that I had a memory to look back on. Oh boy! Looking forward to something cute or funny, I clicked the notice and saw this post:

Oh. That’s right. Just an EEG. Nothing fun or cute or exciting. Except in rereading it, I realized I had caused some excitement for our friends, but not the good kind. More accurately, I had freaked out my friends who thought something bad had happened to Cody because he needed an EEG.

The thing is that EEGs are normal for us. Cody doesn’t remember a time when he didn’t have to have regular EEGs. I’m starting to not remember it either.

Epilepsy is chronic. Even if medication controls the seizures, epilepsy doesn’t usually go away. In general, there is no cure for epilepsy.

Once it’s your new normal, it will likely always be your new normal. Which means abnormal electrical activity becomes normal. EEGs become normal. Regular hospital stays become normal.

This month is Epilepsy Awareness Month – and I am so sick of epilepsy that I had planned to take a break from posting about it. But when it’s your normal, you never get to take a break from it.

Cody was invited to a birthday party this summer…which coincided with an overnight EEG. Fortunately, the party was a sleepover so started later in the day and Cody was discharged from the hospital in time to attend, the supper and gift opening part of the party at least. (He can’t do sleepovers…because abnormal electrical brain activity…that causes seizures especially with lack of sleep…)

Before we knew what time the party started, he had texted his friend group that he may or may not be able to attend because of an EEG. Again, freaking out of friends occurred. All the boys on the thread responded, some asking if he was ok. Two responded with information they had researched to better understand EEGs and share their new knowledge with the group (💜💜💜).

But they were all concerned – because an EEG is serious. It is scary. It is not what most people ever have to deal with (thankfully).

Yet it is our normal. Seeing my old Facebook post reminded me of something I have forgotten over the years: adjusting to a “new” normal doesn’t make it normal.

*****
1 in 10 will have a seizure in their lifetime. Click here to learn about seizure first aid:
https://www.epilepsy.com/recognition/seizure-first-aid

All the colors

By Carrie

On 11/10/2023

In Finding Breath

November! Red, burgundy, and golden leaves, orange pumpkins, and, where I live, often gray skies and white snow.

I recently learned that November also sports a white ribbon – for Lung Cancer Awareness Month.

Unfortunately, I learned that because a friend was diagnosed with lung cancer earlier this year.

A NON-SMOKING friend.

Through the diagnosis and subsequent testing, she learned that there is a genetic mutation that results in many types of cancers but most frequently lung cancer…in non-smokers.

Cancer is hard enough. I imagine having to share a lung cancer diagnosis is doubly hard. Our first thought hearing someone has lung cancer is, “Well, you must have done this to yourself,” right? Because only smokers get lung cancer.

Except she didn’t. Because she isn’t.

This came out of nowhere, a random and very cruel mix up in a gene.

I know what that’s like because a gene not doing what it should have done is the reason my son has epilepsy. It’s the reason I wear purple multiple times a year (including November, which is also Epilepsy Awareness Month).

My friend has a great sense of humor and has used that as one of her tools in this new battle. She hates social media so sends emails to keep us all updated and peppers them with humor.

A recent one read, “As a show of my appreciation for your support of my lung cancer fight, for lung cancer awareness month coming up in November, I’d like to get you a Fu** Lung Cancer shirt so you can show your support of f****** cancer everywhere.”

A sentiment I totally understand because I’ve used that word in conjunction with epilepsy a time or two…but didn’t think I should wear it in front of my 13-year-old. She kindly understood and said she’d find something else.

Fast forward to a package in my mailbox (because we live in different states) and a shirt with a white flowered-lung design on it.

White. Purple. Pink. Red. So many colors for so many diagnoses.

But what do those colors really signify? Those colors are reminders we aren’t alone in the diagnosis. Those colors literally show us that someone else is walking this painful, scary, heartbreaking path right next to us.

Even when I can’t be right next to her.

Through (Together Remix)

By Carrie

On 11/03/2023

In Beauty in the Storm (epilepsy), Gratitude, His Vast Strength (stroke)

In less than six months this year, three friends received very serious cancer diagnoses.

The first came in April when my friend’s husband was admitted to the hospital the same day as receiving the diagnosis. The family’s community immediately rallied. Over the next several months, our family helped with the kids, provided food, and gave hugs whenever needed.

I also gave my friend one of my “The only way out is through” temporary tattoos but she didn’t think her husband’s doctors would let him apply it. Another friend had given her a bracelet that absorbs essential oils so she added the tattoo to her own wrist next to the bracelet. She even shared a photo of the bracelet and tattoo on a Caring Bridge update as they were on the front end of going through her husband’s cancer treatment.

Her post reminded me of my post “Through” last spring which included a photo of that tattoo on my own arm, the arm going through shoulder surgery recovery and PT. Two lone arms going through very difficult times in life.

Then two more friends received cancer diagnoses. Unfortunately, they live plane rides away from us so we can’t do much for them other than send texts, cards, and goofy little items to give them a laugh and help keep their spirits up. It’s been frustrating not being there to help but we’ve walked with them through as much of the journey as we can from afar, even if it was only written encouragement to our friend during his wife’s long surgery last Thursday.

Last weekend a friend treated me to “Swan Lake” at a local historic theatre. We found our seats and then asked a woman to take our photo with the beautiful theatre behind us. My friend put her arm around my back but I struggled to put mine behind her. I had to explain that I still can’t move my shoulder at that angle post-surgery.

“Ok,” she said. “We’ll do this,” as she grabbed my arm & linked hers through it.

That simple act reminded me of a quote I saved from a devotional recently:

We were designed to lock arms & fight together…
“Living Changed: Spiritual Warfare” YouVersion Plan

Yes, that’s what I have experienced within our storms of epilepsy, open-heart surgeries, stroke, and even shoulder surgery – people locking arms with us to get us “through” the storm.

So, while it’s true that “the only way out is through,” it isn’t the whole story.

More accurately, the only way out is through – together.

Be prepared. You’re up against far more than you can handle on your own.
Ephesians 6:13 MSG

Afraid of storms

By Carrie

On 10/27/2023

In Beauty in the Storm (epilepsy)

I am not afraid of storms,
for I am learning how to sail my ship.
Louisa May Alcott

Nine years ago, just weeks before we heard, “Cody has epilepsy,” I started writing. I didn’t actually know WHY I was writing, wasn’t sure if it was a book or maybe just a new way of journaling, and didn’t intentionally sit down to write.

The words just came out of nowhere and I had to write or type them as quickly as I could.

Months turned into years…of seizures…and of writing.

At one point, I added a title page to the Word document that had grown quite large: “Beauty in the Storm.”

But it took many years to be able to see any beauty. Or rather, to be able to see the beauty that had existed throughout but was easily overshadowed by the storm.

Two months ago, we hosted a concert to mark the 10th anniversary of Cody’s first seizure. As I introduced the singer, I was brought to tears while sharing the beauty God has added to our journey. I listed several things with no difficulty but barely managed to speak when it came to sharing about the people we have met – people we have met only because we’re all in the epilepsy storm together.

“Amazing people who, if I had never met them, I think I would have felt an ache from their absence but never known why,” I struggled to say as the truth of that sentence overwhelmed me.

A storm so intense I wasn’t sure I would survive it overcome by beauty so unexpected I could never have envisioned it. I would never have chosen epilepsy but given the chance now, I don’t think I would wipe it from our lives. The beauty in the storm is too precious.

Last week, we spent 5 days in Tennessee for a family wedding and some sightseeing. We stayed in a cabin in the Great Smoky Mountains for one night…and were awoken by the fiercest downpour I’ve ever heard.

Not to be outdone by mere rain, a flash of light lit the bedroom and I thought, “Uh oh,” a second before a thunder crack seemed to BOOM from the backyard and reverberated back and forth against the mountains. It was just a little unnerving but I also almost laughed, it was so shocking…so unexpected. So beautiful.

The one day we planned to spend exploring the mountains began with a thunderstorm which turned into mist, gorgeous mist blowing and billowing and literally crawling up the sides of the mountains.

Later, our drive up to the tallest peak included rain, thunder, mist, and sleet. Our hike to the very top pelted us with hail in the 40-degree air and buffeted us with wind gusts so strong Cody had to grab a railing on the final ascent.

And we laughed. Cody walked in puddles and posed with virtually every tree we passed.

We asked, “How much farther?” of people walking down as we struggled to walk up the path to the 6643-foot peak – and then cheered on others as we hiked down: “You’re almost there. Keep going!”

I shared knowing smiles with several other equally exhilarated hikers. “Bring it on, storm! I can beat this.”

The storm obscured the view from the mountaintop but what we experienced within it was so unique. So unexpected. So beautiful.

Would the view have been stunning in sun and blue skies? Of course. But if that day had been clear, I think I may have felt an ache from the storm’s absence but never known why.

Note to self: you don’t need to be afraid of storms.