Nope, We Don't Celebrate It!

This week is my fourth year since my first tonic-clonic seizure--my Seizureaversary, if you will. I made it! I'm here! 

Knock on wood, I'll be tonic clonic free for four years in July. 

I still have little ones here and there (okay, here, here, here, and there, and here again, lately), but the important fact?

I'M. STILL. HERE. 

Not always upright, lucid or part of the conversation, but I'm still here! 

Here's the thing, though--we don't celebrate any of this. It's one of those things, we kind of just really don't dare. We don't mark anything on the calendar, we just let the dates pass quietly. No streamers, no signs, no cake (I love cake and will use any excuse to have it, so this part is a big deal), no celebratory posts on social media, just a quick, quiet mention.

We don't believe in superstition, but admittedly, Avery and I have never repeated the same routine from the morning of my traffic stopping seizure. I still don't pull out of that stop sign, four years later. I go the long way around to the stop light. I don't sip my Starbucks until we're safely through the light. We don't repeat those four errands from that morning--and if we did, it certainly would not be in the same order. I know that Avery will never forget that day, and I, well, I'll never remember it. 

Sooooo no, we're not big into coincidences or jinxes, hoo doo or bad luck--but we're also not going to tempt fate, you know? 

We all know this epilepsy thing is a time bomb in my brain. 

And I hate it.

It's just there, hanging out, waiting to spring.

SURPRISE!!!

GOTCHA!

I'M BAAAAACCCCKKKK!

It could be tomorrow. Or next week. Or next month. Next year. Five years from now. If we're lucky--never again.

It's not just the seizures. It's the toll it takes on my brain and body, even when I'm not having seizures. My memory is a joke, I'm constantly tired, my depression and anxiety deepened. There are things I can't do--don't dare do--anymore (I really miss concerts), and independence I'll never regain. There are fears my kids may never grow out of. Whenever my body and brain veer off course, we wonder if it's another form of seizure (the answer is most likely yes). It's terrifying for my family when only half of my body comes back, and slowly. Is this a seizure or something scarier this time?

My brain does not care how many years I have in between seizures, or how well I'm doing on my meds, or how long I've been steady on these meds. 

My brain does not care that rather than being the emergency contact for my family--I am the emergency. As Mom and wife, I'm supposed to be taking care of them, not the other way around. My brain does not care that when Shawn goes out of town, we need several emergency plans in place, depending on how, when and where a seizure happens, how long it lasts, and whether or not it reacts to my rescue meds. We have phone trees in place, Plans A, B, C and well, Z. Because--epilepsy. Because--me. It does not care that, as the adult, I should be the one in charge--not my 16 and 10 year old sons. My brain does not care what epilepsy has robbed our family of (like celebratory cake)--movies, TV, concerts, night-driving, even driving on a beautiful sunny day with the sunlight flashing between trees. "Mom, close your eyes," I hear from the back seat. We've carefully explained to our youngest that I do not have photosensitive epilepsy, but I cannot remove that fear from his own brain. I also cannot promise him I won't eventually develop it, and the only way to know is if I have a reactive seizure. My brain does not care when I can't sleep (because of well, my brain), and we miss out on an activity because, "Mom needs sleep." There are things I want to do, things I want to be able to do with my kids--but I have to watch my energy levels, I have to be careful about driving, I have to make sure of this, and be sure of that. My brain does not care.

We use a lot of dark humor to diffuse our stress, anxiety and trauma:

Put a YooHoo in Mom's hand next time.

Do you think Home Depot would give us a discount if Mom shakes the paint can instead?

Who's the current president? Uhhhh, Obama's vice president. (that answer to EMS is a family favorite)

Do you know what today is? Yes! It's today! (another favorite)

What's Mom's favorite song? Shake, rattle and roll!

That sounds like a lot of whining and complaining, but as a family, we try our best to not live in fear. After all, what kind of living is that?  But I know Avery has buried himself in research. He knows what could happen if a seizure goes past 5 minutes. He knows what could happen if my rescue meds don't work. He knows about SUDEP. He knows all the response steps for seizure first aid, including instructions for bystanders. I carry a laminated card in my purse warning well meaning bystanders off because he knows what he's doing. He's in charge until the seizure is over, or EMS arrives. Ezra knows how to hack my phone, and we quiz him regularly on the various steps and plans. In Avery's absence, my 10 year old would be in charge. This is no life for my children, but my hope is it will make them more compassionate and kind adults. Shawn took a WFH job to be home just in case. That's kind of how we operate: Just in case. Nearly everything I do, especially alone with the kids, I wonder if I should actually be doing it. Is it safe? Am I safe? Are my kids safe with me? We try so hard to not live in fear, but we are human. And this is our reality.

But still...

In the words of one of my best friends, who quoted Elton John at the time: "I'm still standing." 

Yeah, but we still don't celebrate. 

No cake here.

Angels Seen And Aware

 Last week, Avery and I had such a weird day--a glitch in the matrix, an experience that left us questioning reality. 

At my FNP's office that morning, I managed to run into a woman who, a little over a decade previously, had been part of a group who made my life in our old neighborhood a living hell. I knew her loud mouth before I even saw her. I immediately recognized her face, and her insecurity. Without acknowledging each other, I saw in her eyes that she recognized me as well.

Fewer than twenty minutes later, her daughter (who didn't recognize me, and I didn't say anything) was our cashier at a store on our errand route. 

Shaking our heads, Avery and I headed to the grocery store.

Making our way through the aisles, me acting like a fool like I love to do, and Avery pretending to be embarrassed (no, I swear, he only pretends!).

Coming towards us in an aisle as I barked out orders to Avery, was this delightfully cheery little gentleman, shorter than myself. He had a smile from ear to ear, greeted us with a wave, telling us that he hoped we were having a blessed day. 

I'm not usually one to stop and have a conversation with a complete stranger in the middle of the grocery store, but there was just--there was just something about this gentleman. I felt compelled to stop. Talking about it later, Avery described feeling pulled. Avery also said he felt as though this man was on a mission, specifically for us, and only us. Despite there being other folks in the aisle, we were the only two people he saw. 

As we exchanged pleasantries, this gentleman began talking about the past--how it can poison the present and the future, how it should stay exactly where it belongs, in the past. 

Then he turned his attention to Avery. He told Avery that he could tell he's loved very much, and how much I delight in him--he used my exact words, "You mom delights in you, I can see that in her eyes." He said that children are their mother's legacies, their life's work, and to always remember that.

And with that, he folded his hands in front of himself, telling us he'd taken up enough of our day. Avery and I were still too stunned, but managed to stutter something about enjoying talking with him, and we thanked him for his time.

This entire exchange took fewer than five minutes, but it's left such an imprint on both of us, it could have taken over an hour.

And then--folks, I know you'll be skeptical, and I don't blame you, because like I said, Avery and I are still trying to wrap our heads around it--he just disappeared. 

As he walked up the aisle away from us, I realized there was something I'd forgotten a few aisles back. I sent Avery on the wild goose chase for it, not even a minute--thirty seconds--in the same direction our new friend had gone.

When he came back, he said the gentleman had just disappeared. His cart was gone, he was gone. There was no sign of him at all. 

He was just gone.

Not in a *POOF* kind of way. He didn't click his heels or clap his hands and disappear in a puff of smoke. He just walked away.

Not in the way one would walk away from another person and disappear around the corner. Not in the way one walks away and out of sight. 

He was just gone.

So, where did he go? Who was he? Was he even there for groceries--what, who was he there for?

Avery and I have our theory. We have our story, which we've held close and shared with very few until now. It was such an experience though, the day was so weird leading up to it, it's a story worth sharing. I know some won't believe us, and I know others will have their own opinions. And that's okay--that means this isn't for them. 

But, this happened to us. It happened with us. And that day, we entertained an angel. 

Thank You, Kind Stranger

(From June 2025)

 I took the boys for haircuts the other day. Ezra just needed a trim, but Avery wanted his long locks shorn into a high and tight. It was quite a shock. 

As I sent minute-to-minute update photos to my two best friends, I got weepy. Too much inside my head, as I sent the photos, there was a third friend I was deeply missing. She should still be here too, I should still be sending photos to her too. 

The salon was busy, and there were quite a few folks watching Avery's transformation. Several noticed my red eyes and attempted to encourage me, thinking I was tearing up because of Avery's massive makeover. 

I let them believe that. They didn't need a trauma dump, and it was just easier.

As I sat down again after the last photos, the woman next to me started talking to me. Gently, kindly, soothingly. She asked questions about my kids, complimented my parenting (if only she'd seen us earlier that morning), and patted my hand. She told me about her grandson--also autistic, homeschooled and Avery's age. She beamed with pride for him, her son and her DIL. 

She kept me talking, never commenting on Avery's hair, never saying, "Oh, it's just hair, Mom!" She was such a calming presence. I don't know if she sensed something bigger in my emotions, or if maybe she also had something bigger going on in her own head, but I'm so grateful she was there.

Jim's wife, I know we live in a small town, but chances are slim we'll ever see each other again--but I hope you know how much you helped me. I'm still thinking about our interaction five days later. 

Thank you for your kindness, for seeing me, for hearing me. Thank you for being love in action.