Rett Episodes-Finally Some Answers For Our Girl

 (Originally posted on Abbysworld)

This is one of my most popular blogposts. i felt the info was important enough to keep sharing...

I’ve thought for days about how to word this post. I want to be very considerate of other families living with Rett Syndrome. While we experience many of the same things, Rett Syndrome is not the same for everyone — and neither is the outcome. So please, take no offense. That is not my intention.

We finally got the answers we needed for our Abby. I feel good about them, and I wanted to share what we learned with you.

Abby suffers daily from what is referred to as Parkinsonian tremors, Rett episodes, and what we once believed were seizures.

In the morning, when she wakes up, her body goes rigid and shakes. She trembles like she’s being electrocuted. Her eyes open, close, and roll around while she looks completely confused. This usually lasts several minutes.

If Abby wakes up at school or on the bus, it’s similar — but with a twist. She looks terrified. Her eyes dart back and forth, and the tremors come in bursts, which have been misinterpreted as cluster seizures. Sometimes, she wakes up shaking and bursts into maniacal laughter.

When she’s startled awake at night — by a cough, a slamming door, or even a noise — her whole body locks up. Her legs go straight. Her arms cross and clamp to her chest. She hyperventilates, shakes, and sometimes cries out.

While in the hospital for observation, Abby had three of these episodes while hooked up to video EEG. Each one was witnessed by at least two nurses, and one was seen in person by the neurologist himself.

Later that morning, the neurologist came in and told me he had good news: Abby wasn’t having seizures. She was having tremors and "Rett-pisodes" — a term I’ve heard before, and honestly, I’ve always felt was just a cop-out for “We don’t have a clue.”

Before I could say any of that out loud, he leaned casually against the wall and asked me to hear him out. We talked for a while, and this is the theory we — mostly he — came up with. What follows is my interpretation of our conversation:

Dr: MECP2 is the gene that makes the protein that helps neurons fire, right?

Me: Yes.

Dr: When our girls are asleep, it’s like they don’t even have Rett. No breath-holding, no hand-wringing, no head-banging or repetitive movements. Right?

Me: Yes.

Dr: Okay, now think of it like this — when the brain wakes up, it’s like a spark plug firing. Or like kick-starting a motorcycle. Everything turns on at once. Are you with me?

Me: (Light bulb going on over my head) Yes.

Dr: Her brain doesn’t work like ours. We wake up slowly — blinking, stretching, yawning. But for them, their brains fire all at once. Neurons are trying to fire, crisscrossing — some hitting, most missing. That’s what causes the tremors. That’s what you’re seeing. The muscles are reacting to that firing pattern.

Me: Yes... but she also shakes when she’s excited, happy, upset, hurt, startled, anxious...

Dr: And do you suppose that your brain might fire differently when you’re excited, happy, upset, hurt, startled, or anxious?

Me: Oh my God.

Dr: All of those emotions make her brain fire differently too — but because her brain and body work differently, it manifests differently. That’s why we also refer to it as a movement disorder. Her brain can’t get her body to do what she wants it to do. That’s what causes the tremors and Rett episodes.

Me: (Looking at Abby, bursting into tears) I get it. I get it.

Dr: We’re not going to say she’s never had a seizure or never will — but she isn’t having them now, not with what we’re seeing here. I hope this gives you some comfort and understanding. Her brain is intact. Her neurons just aren’t firing to the muscles correctly. That’s what this is. That’s what a tremor is. That’s what a Rett episode is.

I felt I needed to share this for those of you who have children with Rett and are dealing with the same thing. I know there are many kids more severely affected than my Abby — but if this helps even one parent feel a little more clarity, it’s worth sharing.

This doctor explained things in a way no one ever has before. And now?
I get it.
I finally get what’s happening to my girl.

Stuff You Don’t Get to Say to a Special Needs Parent...at least not to me

I'm revising an old post from Abbysworld after someone close threw something especially cruel at me last week with a straight face....

Imagine all the symptoms of Autism, Cerebral Palsy, Parkinson’s, Epilepsy, and more — all in one young person.

That’s as powerful a statement as we can make.

Lately, as my child gets older, there are a few things I want to say to many of you. Instead of pulling you aside one at a time, I’m putting it in writing so you won’t forget. If this makes you cringe and worry that I may be referring to you, I probably am.

These are things you are not allowed to ask me, say to me, or discuss with me — as her mother. I’m all for awareness and education, but really, people… take your ignorance elsewhere.

---

1. "What’s her prognosis?"
F off. That’s her prognosis.
What I hear is: Is she going to die? When is she going to die?
It’s a thought I live with 24/7 — I wake up with it every single day. I don’t want to discuss it with you.
Do you Muggles actually talk like this? I mean, I have a typical child too, and no one ever asked me if he was going to die or if I thought he’d ever be “better.”

---

2. "Do you think she knows where she’s at?"
Umm… she can see. She can hear. She just heard you say that.
Yes, she knows.
How many times do I have to explain that her brain is intact?
It’s the connection between her brain and her body that’s impacted — and you don’t get it.
And y’all act like she’s the slow one?

---

3. "What’s wrong with your girl?"
Her mom takes her to places where idiots ask stupid, insensitive questions.
That’s what’s wrong.

---

4. "Does she have her period yet?"
What? Do you have yours?
Do you seriously ask people this?
Here’s the thing: don’t ever talk to me about this unless you are another special needs parent of a girl and you genuinely need advice.
That’s the one and only time it’s acceptable.

While you Muggles get to celebrate a “rite of passage,” we get to mourn another thing our child will never experience.
Do you think I get to tell her she’s a woman now and give her the baby speech?
No. No babies. No grandchildren.
None of your business.
Once again — F off.

---

5. "Oh look, she remembers me!"
Really? Like a dog at your granny’s?
Amazing, isn’t she?
We’d have her do tricks if it wasn’t for the wheelchair and that whole lack-of-body-control thing.
TAH-DAH!

---

6. "She’s always so happy. I don’t know how, with everything… you know…"
No. I don’t know, you stupid cow.
She’s happy because she is loved.
She’s the center of her own universe.
Her world really does revolve around her.
Who wouldn’t be happy?
Assholes.

---

7. "She’s sure noisy for a nonverbal kid."
And you’re sure an asshole.
Why don’t you go ahead and tell her to shut up?
Tell her to be quiet when she’s expressing herself in the only way she can.
Or here’s a better idea: use your perfect strong legs and walk away if you don’t like it.

---

8. "I don’t know how you do it." / "I couldn’t do it."
OMG. Seriously?
You couldn’t take care of your own child?
You couldn’t look into those eyes — eyes that look to you for everything — and do whatever it takes, every day, all day?
Wow. Just wow.

---

9. "She seems a bit lazy."
Umm… because she can’t stand or sit on her own?
Because she can’t walk more than a step without falling?
Or maybe it’s because her teachers have been holding up two cards for nine years asking her which one is pink and which one is blue — and still expect her to be interested?
Enlighten me, Knower of All Things!

---

10. "Do you ever wish you hadn’t had her?"
Drop kick.
To the face.
Your face.
I picture it every time.
And one day, I swear… I’m gonna do it.

________________________________________________________________

And then there’s this one — the quiet dagger:

“It’s not like this wasn’t always going to be the outcome.”
That one bites deep.

Like when someone says, “Well, you knew this was coming,” after a long illness. As if knowing softens the blow.
As if watching your child slowly fade makes it easier to lose them.

What you don’t understand is that every Rett mom — every single one of us — wakes up each morning and has to take that first breath, praying it’s not the day we lose her.
That doesn’t go away. It never gets easier. It never stops.

Yes, I’ve known since the diagnosis.
Yes, I carry that reality in every cell of my body.
But knowing what’s coming doesn’t mean I love her less.
It doesn’t mean she matters less.
She is still my child. Every day. Every breath. Every heartbeat.

So when you say something like that, know this:
You are not reminding me of reality. You are reminding me that not everyone is built to love someone through every version of their life.
But I am. I have been. And I always will be.

---

And while we’re at it — let’s talk about the word retarded.
It’s not cute.
It’s not funny.
It’s not “just a joke.”
And if you still use it — you are the one showing signs of society’s warped definition of the word.
Not my daughter. Not any of our children. You.

This word has been used to mock, belittle, and erase people like my girl.
It’s not edgy. It’s not ironic. It doesn’t make you clever or cool or savage.
It makes you small.

And before you come at me with, “Well, Elon said it…” or “This celebrity used it…” — I don’t care if you’re famous, rich, or hold a trillion-dollar stock portfolio.
When you use that word, all I hear is ignorance — loud and proud.
And I promise you: no amount of money or followers can buy back your decency once you’ve thrown it away.

Say it, and you’re telling the world who you are — not who my daughter is.

The Roast is Rotten, and So Is the System

 

The Roast Is Rotten, and So Is the System

I had one of those dreams last night that sticks to your ribs like regret and cold mashed potatoes. The kind where everyone is dead in real life but alive in the dream. Everyone was crammed into my grandmother’s house—alive, well, and lounging in the living room like nothing had ever happened. Except me. I was stuck in the kitchen, naturally, trying to make a holiday meal out of fat, bone, and lies.

They’d all been promised a full roast dinner. I didn’t have a roast. I didn’t even have anything close. I was standing there with a big hunk of mystery meat, trying to pretend it was something it wasn’t, and I couldn’t help but think: Yep. Sounds about right.

Then my son busts in, acting like it's the best day of his life because Scott Stapp from Creed is here, just chilling in my grandmother’s chair like a rockstar Buddha. My son tries to do one of those dude handshakes, but instead slaps him upside the head. I don’t know what that means, but it felt about right, too.

Meanwhile, I find a stack of steaks in the fridge and think, maybe I can fake a roast. Maybe I can save this. And that’s when Brad Pitt—young, smug, and munching on an apple like he’s on a break from filming Legends of the Fall—walks in and tells me to check the dates. Sure enough, the steaks are from 2019. And he tells me, “You really need to get your smeller tested.”

Now that’s a low blow. Because in real life, I lost my sense of smell with my first round of COVID and it never came back. So thanks, dream Brad. Add it to the list of things I’ve lost without anyone taking it seriously.

In the next breath, my son is a toddler again—but with Rett syndrome. Not Abby. Him. And I had left him in overnight respite care just this once, trying to grab a scrap of rest. When I go to pick him up, the woman in charge (played by the sitcom mom from the George Lopez show, because dream logic is weird like that) says they didn’t feed him. “He didn’t say anything,” she shrugs.

Let me say that again for the people in the back:
They didn’t hook up the G-tube. They didn’t feed him. And because he was nonverbal, they assumed it was fine. No one could find the woman in charge. No one could reach my mom. And everyone around me just shrugged.
It’s not a big deal.
I shouldn’t be so upset.
I should understand.

Dreams aren’t subtle, but this one hit like a brick to the teeth. It spelled out the fear and fury that live under my skin every day:

- That I am expected to make miracles out of scraps.
- That no one else will take proper care of my child—not because they can’t, but because they don’t think it matters.
- That when I finally step away, no one answers the phone.
- That I’m serving expired meat and guilt while everyone else gets to sit in the living room and marvel at Creed.

This is what it’s like to be a caregiver, a mother, a woman trying to keep everything upright while the foundation crumbles. You’re expected to smile through it. To serve the meal. To accept that nobody fed your kid and say thank you anyway.

I woke up furious. But more than that, I woke up seen.

And that’s something, I guess.

Where Does He Stop?

 Where Does He Stop?

I’m lying awake, thinking about everything that just passed with this bill. Brokenhearted doesn't even begin to cover it. And while I'm stuck in this sleepless spiral, I can’t stop

thinking about the other part of the nightmare: Trump.

At a rally in Iowa, Trump openly said he hates Democrats and implied he’s not their president. Obviously, that’s fine with us—because none of us asked for that dumpster fire to begin with—but the fact that a former (or maybe future) president can say that out loud and still be treated like a viable leader? That should be terrifying.

Because what is that, if not a rallying cry?

He already dehumanizes immigrants, anyone non-white, anyone disabled, anyone who isn't bowing at his feet. He’s always needed a villain to destroy. And now he’s telling his followers—many of whom are armed, unhinged, and waiting for a signal—that entire groups of Americans are unworthy. That Democrats, critics, immigrants, and anyone “different” aren’t real Americans.

What happens when it’s not just about deportation? What happens when it’s about elimination?

Trump has always been hellbent on revenge—but for what, exactly?

For not getting his way? For being exposed as the fraud he’s always been? Maybe he lashes out because deep down, under the spray tan and narcissism, he knows people are catching on. That he’s never paid his fair share. That he’s never been transparent, honest, or even remotely decent. And instead of owning any of it like a grown man, he doubles down with hate.

Is it fear? Is it shame? Does he even have shame? Or is this just who he is—ugly, entitled, and terrified of the world seeing him for what he really is?

He doesn’t just want power—he wants to punish anyone who dared to question him. He’s shown us what he’s capable of. We've already seen people disappear from his circle and reappear in handcuffs—or silence. How long before the people who simply disagree with him disappear too?

He's not hiding any of it. It's not coded. It's not subtle. And it's not just policy—it's personal.

So I ask again: Where does he stop?

When do we stop pretending this is just politics-as-usual? When do we admit that this is something darker, more dangerous, and disgustingly familiar?

Because if we keep waiting for someone else to stop him, we’re already too late.

And if you're still not scared—then maybe you’re not paying attention.