Part 1: My Child Has a Serious Invisible Disorder.

When all you want to do is fall apart, but you cannot.

Welcome to Shame Sandwich, where Megan feels equal parts shame and glee in sharing hilarious personal thought rants every Friday. Sometimes on shame, sometimes shame infused, and other times, nothing to do with shame. Enjoy responsibly.

---

Authors note: Today’s newsletter is a little more on the serious side. 🖤 I’m shit at being vulnerable with the most vulnerable things. How do I answer the question “how are you?” when the answer might knock the poor asker’s socks off and I’m left holding a stranger’s smelly socks? ← and then I’m just there awkwardly joking about it? Anywho. I’m opening up and sharing something that has knocked my socks off for the last year. It’s been really hard. It’s been really lonely. Did I mention hard? It’s still a lot. But you have to carry on, you know? And of course, there have been so many amazing wonderful things this past year. And I can compartmentalize like you would not believe. But there’s just been so much emotion that I’ve buried. And sometimes, like as I’ve written this newsletter, it’s just… bubbled up. There’s been a lot of tears writing this. I feel like I need to completely fall apart before I can fully be put back together. But I can’t fall apart. Not when you’re a FT single parent. And so, I pray that in writing about this… it lets me fall apart a little bit. And I can stop holding all of this fucking shit inside of me, and stop feeling like such a burden for sharing the heavy shit. Because… how does one tell someone that their child has a serious invisible disorder and the weight of it wears on you constantly, on top of everything else? And so, I’ve kept all the heavy shit to myself.

This newsletter is about reversing that. And learning to share the hard shit, and not feeling so shameful doing so. Even though I feel so bad taking up space like this. And now for something crazy: I didn’t plan this timing at all but guess what? My daughter’s EEG was exactly 1 year ago today, on 12.13.23. What are the chances? Holy shit. 🖤

---

I shouted her name.

Amelia.

AMELIA.

Amelia!!!!!!

She was right there, right in front of me but it seemed like she couldn’t hear me. She kept sitting on the couch, didn’t turn her face towards me as though I wasn’t standing mere feet away from her in the kitchen shouting her name.

I didn’t know it then, but in the fall of 2023 my daughter’s life had completely changed. As would mine.

I first started noticing times a couple of months earlier during the summer when it seemed like my daughter was intensely “day dreaming” for 10 or 20 seconds.

She would “zone out”, hard.

And then she’d be ‘back’ and carry on. Everything else would carry on as normal.

At first, I assumed she was daydreaming, what else would it be? She was my daughter after all, and if it’s one thing I have it’s an active imagination. So, she simply must have been lost in her own little active imagination world, too. Right?

And then I started noticing these “zone outs” more frequently. I couldn’t get her attention when it was happening. And once you notice that happening, you can’t un-notice it.

After the initial “aww, she’s really daydreaming!” it turned into… “Could this be something… serious?”.

Serious felt like a bad word.

A word I could hardly let myself contemplate. And so I tried to brush it off.

My baby is FINE.

Everything is FINE.

But it was not fine. Something was wrong.

I hadn’t breathed a word of this to anyone else. I don’t have much of a support system in my life as it is, but this? This felt too vulnerable to share with anyone. I desperately wanted to stay in denial. There can be nothing wrong with my child, my only child.

But eventually, I knew I couldn’t stay in denial.

I turned to Google: “kid daydreaming and not responding”.

Fuck.

No.

No no no NO!!!

Seizures, Google told me.

That word gripped my heart and shredded it.

Absence Seizures to be precise. All of her symptoms were text-book spot on. 💔

---

Here’s the part of the story where I pause and tell you I had never heard of absence seizures before. Of course, I’d heard of “Grand Mall” seizures (or Tonic Clinic as more commonly referred to now) but what the hell were “absence seizures”???

I will try and offer a quick example of absence seizures (because a Google description makes it sound nothing like it really is).

Imagine going about your day, you’re washing dishes, you’re driving to work, you’re eating lunch, you’re in the checkout aisle at the grocery store, you’re in a job interview, you’re on a first date… and you randomly BLACKOUT for 10 to 20+ seconds. You have NO idea what happened during that time, and you can’t see or hear anything.

Physically, you regain your motor skills but your cognitive ability completely disappears. You have no idea what’s been said to you, what’s been done to you.

You’re cognitively gone.

And when you “come back” there’s a 50%+ chance you will have no idea that you’ve just “blacked out”, either. You have no idea when these blackouts will happen, either. They can happen to you at any moment of any day. Riding a bike. Walking across the street. Playing sports. Driving. Alone with strangers. Swimming.

.

.

.

Sound terrifying? It is. 💔

Absence seizures are more common in kids and can happen anywhere from 20+ times to 100+ times per day… let that sink in.

And if you have absence seizures, there is a greater possibility they could turn into the “big” grand mal seizures, too.

Note: Those with absence seizures will have their own unique symptoms and experiences, but I hope the above helps you understand a little more about what they are.

---

Ok. Back to the journey.

I still clung to the hope that maybe, just maybe this was all a coincidence. Maybe she didn’t have absence seizures. I did my best to hide my worry and carry on. I tried to convince myself that my daughter’s symptoms and what Google told me were just a fluke coincidence.

You can’t trust Google. This is why you don’t fucking Google shit, Megan!!!!

But my denial and futile attempts to wish away the symptoms as “mere coincidences” could no longer be ignored.

I found my strength and dug into the hell of insurance portals to find a pediatrician. Amelia has been a healthy kiddo all her life aside from her headaches and with insurance switches and such she didn’t have a set pediatrician. Megan, you’re the worst mom ever ← my shame. I poured through in-network pediatricians and settled on the one that looked like the best option.

Alright, the appointment was made. I can fucking relax. Except, I couldn’t.

Time to text the grandparents. Had they noticed anything? One had, now that I mentioned it, noticed some times like I described. The other one hadn’t noticed anything. Oh great, you’re not even paying attention to my fucking child. ← My anger venting to me.

The appointment came and yes, the pediatrician wanted her to see a neurologist ASAP. It’s fine, everything going to be fine. ← me pretending to be fine. And failing.

Back to the insurance portal. Whew, thank god the neurologist is in-network. Except it was 4 fucking weeks before she could get in to be seen. What if my child has a fucking brain tumor?! ← the thoughts nobody saw. Yet my body took the toll.

…

…

…

Finally, the neurologist appointment day was here. The Nurse Practitioner Neurologist’s name was Ashley, and I liked her immediately. Around my same age, a mom of young kids. Relatable. ← grateful for small mercies.

Unfortunately, the appointment was less helpful than I desperately needed.

“I can’t give you any answers yet, we need more appointments first” ← the nice NP named Ashley told me. Jesus Christ. My stress is through the roof and I need answers, now.

First, there was an EEG ordered.

It was 24 hours at home, with a camera monitoring her the whole time. There was a laptop set-up as well that monitored her brain activity and showed her brain activity in real time.

And… I could see her having seizures. On the laptop. In real time. I’ll never forget that holy fucking shit moment as I watched the laptop screen.

And there was nothing I could do about it.

And it was just me… no partner to share this burden with. I had to stay strong for my daughter. Even though it was wrecking me inside. 💔

And yet there was still a part of me that hadn’t fully accepted it yet.

Just because I could see her brainwaves suddenly look like a tsunami of activity could mean… fuck. I knew what it meant but also because I hadn’t gotten a “formal diagnosis” from a Dr it still felt like I was in that horrible limbo period of waiting.

They told me it would be about 2 weeks before we had the results officially read by a Dr.

Fuuuuuuuuck. Waiting felt like torture.

This was the middle of December 2023, and they weren’t kidding about the 2 weeks. I got the call a couple of days after Christmas. My daughter wasn’t even at home. She was with my ex-in-laws at their cabin for a week of fun.

phone buzzes

Me: Hello?

Nurse: Is this Megan?

Me: Yes...

Nurse: Hi, I’m the nurse from Ashley’s office. Your daughter has absence seizures, she had 8 during the 18-hour period she had the EEG on, plus another 20 or so unusual electrical brainwave activity detected. We want to start her on medication right away. Plus, you should have emergency seizure medication on hand in case she has a tonic-clonic (the big one) seizure.

Me: Um, [my baby, my baby, my baby has seizures, no, no, no] ok… I actually have a lot of questions about the medication. I’ve been doing a lot of research and there are a lot of dangerous side effects and I would rather talk to Ashley about this in person at next week’s appointment instead of starting her on the medication immediately.

Nurse: I don’t advise waiting, these could turn into bigger seizures at any moment even resulting in death.

gut punch gut punch gut punch gut punch gut punch

I wanted to reach through the phone and scream at this nurse “I’m not a bad mom for wanting to wait!!!! I have questions!!!! These medications aren’t “harmless”, either!!!!

Me: Ok… well, I’m going to wait. She’s been having these absense seizures for a couple of months now and I don’t see the harm in waiting a couple more days. It’s not like she’s having 50 or even 100 per day… [please, can you fucking give me some reassurance, nurse, please???!]

Nurse: Well, fine but I’m still putting the prescription in and you can pick it up from the pharmacy if you change your mind.

Me: Thanks, bye.

…

…

…

And that’s when I lost it.

My sweet precious innocent baby girl officially had absence seizures. There was no shred of delusional hope to hang onto any longer.

And she wasn’t even at home for me to squeeze and cuddle. I just wanted to hold her close.

💔💔💔💔

I sat on the edge of my bed, alone, and sobbed.

Finally, finally acknowledging all of the fears that I’d kept at bay the previous weeks.

All of the questions, the what-ifs…

The future felt heavy. So fucking heavy.

And lonely.

All of this was on my shoulders. Children are supposed to have two parents. A parent is supposed to have a partner.

My child only had me.

I only had me.

…

…

…

As a full-time single parent since my daughter was 2 years old, I’ve had to be tough as nails. Every single decision is on my shoulders. And it’s hard. And lonely.

But I don’t think I’d ever felt as alone in that moment.

The weight of my daughter’s future had always been in my hands, but the stakes of the game had violently changed.

My daughter has a serious invisible disorder and it was up to me to make it ok.

Somehow.

It’s all up to me.

And the weeks that followed would become even more of a nightmare.

Part 2 comes out next Friday, 12.20.24. 🖤

-M

P.S. - In closing, I want to acknowledge the fact that this is all from my perspective, and the agony of carrying this burden all on my shoulders, with no partner, watching my only child have a serious brain abnormality is… really hard. However, I want to give the hugest shoutout to my darling daughter Amelia, who actually has to deal with these absence seizures. It’s just not fair. 💔😭

---

Hi, hello! You just read Shame Sandwich where I, Megan, share some shit with you in the only way I know how: blasphemously. Thank you so much for being here. 🖤

Pssst, do you run a business? Do you want to make your marketing better than your enemies hilariously unforgettable? Hire me.