Category: Beauty in the Storm (epilepsy) Page 1 of 7

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.

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

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.

Clingmans Dome, Great Smoky Mountain National Park

Imperfect Perfection

By Carrie

On 09/29/2023

In Beauty in the Storm (epilepsy)

Hurricane Cody. Octopus on speed. The Little Dictator.

To say Cody has been a handful is an extreme understatement, as those nicknames that we’ve given him (starting at about 5 months of age and into toddlerhood) testify.

My husband and I also frequently say that while we may only have one child, we are having the full experience. And I realized this morning: I really am.

I shared this photo early this morning with another social media mom who also has a son with epilepsy and ADHD (as well as autism). She had posted a photo of herself standing behind her two sons with a hand on each of them. The caption read,

“How do you recognize the mama of a child that had autism, adhd, and is a constant flight risk? Look at how they’re positioning their hands on their kids for pictures. 🤣”

Which made me laugh because I have been there so many times that, before I even read “constant flight risk,” I thought it. Yes, those exact words.

Constant. Flight. Risk. Oh my.

(Note the FULL ARM wrap I’m utilizing to capture “The Hurricane” for the photo.)

I didn’t necessarily laugh in the moment but, reading that post and thinking back, I can definitely laugh at the struggle now. Maybe being able to share it with someone else makes it easier to laugh.

And Chuck and I have laughed day after day for over a decade about something Cody has said or done. Years later, we still laugh about some of those things.

Yet, I’ve also cried more in those years than I ever thought I would, from fatigue, fear, and even anger at our life’s situation.

It seems impossible that something that cuts out a little part of me could also make my life so full.

I guess a life doesn’t have to be perfect to be perfect.

All the -ists

By Carrie

On 06/16/2023

In Beauty in the Storm (epilepsy)

The journey started with a sheriff’s deputy and paramedics crowding my tiny bathroom.

The deputy arrived first so had already put an oxygen mask on my even tinier toddler by the time the paramedics entered.

Almost ten years of seizures later, the journey has led me to a quiet cabin on a lake by myself while Cody attends camp on the same lake. I dropped him off Monday morning once the rest of our church group arrived and picked him up at 5 pm that night.

It’s not a day camp but for Cody it is. Cody, whose seizures are triggered by poor sleep, can’t stay up until midnight like the other campers. Each day this week, I have dropped him off in the morning and picked him up at supper time so we can eat, do epilepsy meds, and sleep in our own cabin…the cabin I have to myself during the day while Chuck works & Cody plays, swims, and experiences his first week-long camp.

After getting all of his meds checked in at camp on Monday, Cody ran off to take his swim test. I drove back to the cabin, plopped in front of a wall of windows overlooking the lake, and exhaled.

Then I remembered that I had only told the pastor that Cody should always have a swim buddy – I had forgotten to tell the lifeguards he has epilepsy so they could also keep an eye on him (seizures in lakes are bad).

And THEN I thought, “I’ve done what I can.”

A long list of “-ists” came to mind as I thought about having done what I could for Cody on this journey:

Neurologist
Epileptologist
Neuropsychologist
Otolaryngologist
Sleep specialist
Occupational therapist
Physical therapist
Audiologist(s)
Endocrinologist
Psychologist
Psychiatrist
Cardiologist
Functional medicine specialist
Allergist

It has taken a lot of work to get to this point. To give Cody what he has needed to be able to spend his days at camp.

This week, Cody gets to just be a camper. Not exactly like the other campers but, at least during the day, he looks like one.

And, at least during the day, I get to enjoy one more -ist:

According to Virtuoso, The Travel Magazine, “If your idea of a vacation is to sit by the beach all day long, you’re a Relaxationist.”

Amen.

When life hands you lemons,

By Carrie

On 05/19/2023

In Beauty in the Storm (epilepsy)

…use a lemon filter!

Ok, that may not be what you were expecting me to say. I’m referencing the goofy filters (overlays to videos) on Instagram, in case you’re totally baffled.

A friend asked me today what I do to add laughter to my life. I pulled out my phone, opened Instagram, and showed her a video of me as a lemon. Just a lemon with my eyes and mouth, no body. And she threw her head back and laughed.

Now the reason I’m a lemon is not funny. I recently created a private Instagram account…named after the name another friend had given her newly discovered cancerous lung tumor.

My friend lives in a different state so I can’t even help her. The tumor had grown so large by the time the doctors realized she had cancer that she can’t get enough breath to talk anymore…so I decided to talk to her.

We log into the account, I post videos, and she writes comments on them. They are all meant to make her laugh – because she had asked for funny cards or notes to keep her spirits up…and thankfully we have the same sense of humor.

On my second video, I discovered a filter that made my face a lemon…and since I was still recovering from shoulder surgery, it had been many days since a shampoo – so a lemon filter was perfect!

She loved it so much that I played around with other filters and have even created Season 1, Episode 2 of “The Lemon.”

Life throws so many lemons at us, so many circumstances we just can’t control. But we get to choose how we are going to face those circumstances.

Like by turning my face into a lemon to add laughter to someone’s day.

We shouldn’t deny the pain of what happens in our lives. We should just refuse to focus only on the valleys.
Charles Swindoll

Broken

By Carrie

On 05/12/2023

In Beauty in the Storm (epilepsy)

Today’s previously scheduled post on anxiety has been postponed … due to PTSD.

I really should know better than to plan my posts. But it’s Mental Health Awareness Month and I’ve dealt with depression, anxiety, and PTSD – more importantly, I’ve survived all three. So, I decided that’s what I needed to share, in that order, this May, what someone else may need to hear.

Except I watched a movie yesterday that’s thrown a wrench in that plan. Or, more likely, this is exactly what I need to share today.

See, I saw a seizure last night. Not a real one, not in my son. A fake one, in a movie. I actually critiqued it at first. Until the actor got a little more realistic. Until he came to after the seizure with drool spilling out of his mouth as he dazedly tried to sit up…just like Cody.

Ironically, “Dog” is a movie about two Army Rangers – one human, one dog – who have been medically discharged with traumatic brain injuries…and PTSD.

We’re all broken in so many ways.

Divorce.

Job loss.

Health issues.

A fake seizure in a movie that was supposed to help me escape my life, not mirror it. Not trigger the need to hide in my bedroom for 20 minutes until the tears stopped.

These shattered places can cut us at any time.

Depression. Anxiety. Trauma.

Does it matter what it’s clinically labeled? No, it’s all just brokenness.

It’s Mental Health Awareness Month. And I’m very aware of mine today. And that’s really the most important step. I can’t heal what I can’t see.

He has sent me to bind up the brokenhearted.
Isaiah 61:1