Cody was born in October. 🥳 Then, 10 years ago, he was diagnosed with epilepsy in October. THEN, 7 years ago, we learned he’d been misdiagnosed & would not actually outgrow his epilepsy…in October. 💔 I recently saw a poem titled, “Joy Comes Back,” by Donna Ashworth, and I decided to bring joy back into October. This video clip was the very first thing I found in my search for little joys from past Octobers. To quote Cody, this is something special. 🥰
I will only send these emails weekly in October but I will be posting daily to my personal Instagram account – all the little joys I uncover from the last 10 years. If you’d like to follow along and see how joy comes back, join me HERE!
I love summer. I mean I LOVE summer!!! Tank top, shorts, bare feet, sitting on my deck. Maybe reading, maybe doing nothing at all other than thawing out from a hard winter and stocking up on sun and warmth for the next one.
Which is what I was doing over the weekend – except that I had that bane to modern existence in my hands: my cellphone.
I needed to find something for a small storage shed and could not for the life of me locate what I needed anywhere on the web. And I had spent a lot of time looking. Way too much time, especially given I was on my deck and should have been enjoying the sun instead of getting irritated with online shopping.
Then I caught something dark out of my peripheral vision and looked up as a small butterfly gently floated down and landed less than a foot away from me. It lazily opened its wings and soaked up the heat from the sun.
I closed the web window on my phone, opened the camera app, and slowly turned the phone 90 degrees so I could photograph the butterfly. It sat there for 1-2 minutes which is unheard for a butterfly and I sat quietly next to it, just enjoying it being so close.
The butterfly eventually flew off…and left me contemplating.
I often feel like I take off like that, running on ahead of God like a child ahead of a parent, when it’d be in my best interest if I just walked next to Him and let him lead. That butterfly made me wonder about that image though. What if it is the other way around? Maybe I’m the adult – the too busy, present-minded-elsewhere, jaded adult who can’t see the blessings right in front of her. All around her. I just keep walking right past them.
While God is the more childlike of the two of us, running off ahead of me. But He’s running forward to point out all the beauty I so frequently miss.
“Carrie! Look at this!”
He runs to my right. “And look at these!”
Running past me to the left, He says, “And what about this one? Did you see this one? That one I made just for you.”
All day long he effortlessly bounds from one beautiful thing to the next, one amazing gift after another.
If only I’d look.
If only I’d bound around with Him, oohing and ahhing… stepping on a thistle sometimes, grabbing a thorny rose… but not letting them become my whole focus.
Thistles and thorns exist. They hurt and require attention.
But not all of my attention.
Your voice is a burning bush Your voice is a million things Your voice is the sound of thundering hooves Your voice is hummingbird’s wings And I don’t want to miss it I don’t want to miss a thing
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.
“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”
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.”
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.
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.
“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…
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.
