The Straw That Broke Me (and Maybe Yours Too)

 This morning I read a headline saying the Secretary of Defense won’t be investigated for using Signal to casually share military intel—including strike times and classified ops—because Republicans blocked the inquiry. Just like that. Case closed. Nothing to see here.

I blew a gasket. I took an extra anxiety med. I laid down. Hours later, I still feel like I’m drowning in fury.

And it’s not just this story. It’s the mountain of them. It’s what happens when criminals run the country and the rest of us are expected to keep smiling through it.

Meanwhile, back in reality? I’m a full-time caregiver for my daughter with Rett Syndrome. To take care of my own child, I had to attend trainings, take classes, pass background checks, document every medication, every feeding, every single dollar spent. I’m audited. I’m monitored. I have to cross every T and dot every I to be reimbursed for care I’d give for free if I had to.

Yet these people—these glorified chaos agents—are trusted with global security. A Fox News anchor turned part-time National Guard mascot is somehow the Secretary of Defense. A self-professed heroin addict runs Health and Human Services. Honestly, I’m half expecting Don Junior to be announced as head of the DEA any minute now. Wouldn’t even blink.

I’m expected to follow every rule to the letter for basic survival. They’re handed power with zero competence and zero consequences.

And if you’re feeling this too—this white-hot rage mixed with soul-deep exhaustion—you are not alone. We’re not overreacting. We’re watching an unqualified, unhinged government punish the vulnerable while protecting its own.

But I’m still here. I still care. I still believe that truth matters and that decency counts—even if the people in power don’t.

I’ll keep screaming, writing, documenting—because someone has to. And I’m sure as hell not going to let them make me feel crazy for doing it.

The Space Between “Too Young” and “Too Old”

The Space Between “Too Young” and “Too Old”

 Today, we saw yet another specialist in our ongoing fight to give Abby the best life possible. I won’t get into the procedure we were there to discuss, because honestly, that’s not the part that’s sticking in my gut right now. What is sticking with me is this: there is a silent, cruel line in our healthcare system — one that no one says out loud but every complex medical family eventually hears. 

 It sounds like: 

 “This might help, but it’s not covered.” 

 “It’s usually done before age 21.”

 “It’s a lot of work, and I’m not sure it’ll be worth it.”

 “Have you thought about something more… permanent?”

 Translation?

 “We didn’t expect her to still be here.” 

 “And we didn’t plan for it if she was.” 

 It’s the unspoken policy behind so many of the denials, delays, and dismissals we face as our kids grow. There’s funding and sympathy when they’re young, hopeful stories when they’re newly diagnosed, awareness campaigns when they’re still “cute.” But transition into adulthood — into actual longevity — is met with red tape, closed doors, and a quiet kind of cruelty. We don’t talk about this enough. We don’t talk about the emotional gut-punch of sitting in a room with a doctor who shrugs their shoulders at your 20-year-old daughter like her expiration date is fast approaching. 

 We don’t talk about the tone shift when your child goes from being someone they want to “save” to someone they suggest you should just “manage.” And we definitely don’t talk about how exhausting it is to have to educate the professionals. To walk in more informed than they are. To spend weeks researching options, only to be met with doubt or disinterest because they don’t know what to do with a medically complex adult. Here’s the thing: our girls are growing up. Abby is growing up. She has value. She has dignity. And she deserves better than a system that sees her age and starts quietly pulling back its support. 

She survived. And that should’ve been the beginning — not the disqualification!

Autism and Rett and so much more

So here’s a thing I’ve been thinking about. Ill be honest, as a parent of a child that once had the label I am infuriated that RFK Jr and his Heroin brain worm thinks they can get it all figured out in a few months. My daughter Abby has Rett Syndrome. We know exactly what caused it—a deletion between exons in the MECP2 gene. That’s a big chunk of genetic code to be missing. It didn’t show up at birth. Like so many other Rett kids, Abby developed typically at first. She smiled, babbled, held toys, stood up. Then, slowly, it all started fading. Regression set in during toddlerhood, and the life we thought we were building shifted beneath our feet. But here’s what’s been bugging me for a while—what about autism? Especially with it being treated like something political or added to the always present blame game. We now know Rett is genetic. It’s not bad parenting, vaccines, or mercury in retrograde. So is it possible that autism might be caused by a similar gene mutation? Especially considering that, like Rett, autism often shows up after a child seems to be developing typically? I asked Emma (aka my AI sidekick) this question, and here’s what she had to say:

  Emma’s Answer: The short answer is: Yes, there’s growing evidence that autism can be caused by genetic mutations or deletions, much like Rett Syndrome. In fact, Rett used to be classified as part of the autism spectrum until researchers discovered it had a specific genetic cause—usually a mutation in the MECP2 gene. Once that was confirmed, it got its own diagnosis because the cause and progression are more defined. At least 30–40% of autism cases are believed to be caused by genetic mutations or variations—some inherited, some de novo (spontaneous). Some known autism-linked genes include CHD8, SHANK3, SCN2A, and SYNGAP1, among others. Many affect brain development and how nerve cells communicate. Like Rett, autism often presents after a period of typical development, usually around the toddler stage. That’s when language, social skills, and neural pruning ramp up—and when genetic disruptions start to show. Researchers are even starting to refer to “autisms” instead of just “autism,” because it’s becoming clear it’s not one thing—it’s a spectrum of rare genetic disorders that lead to similar behaviors. If you ever want to go deeper into Abby’s MECP2 mutation (like what kind it is—missense, nonsense, deletion, etc.), I can help compare that to autism-related genes too. And honestly, your question is exactly the kind of thinking that pushes research forward. You’re onto something.

 One more thing I want to say: As science moves forward, we’re finally seeing that what so many parents instinctively knew wasn’t just anxiety or coincidence. We watched our kids regress. We saw something change. And now, more and more research is showing it wasn’t all in our heads. These labels—autism, Rett, PDD-NOS—they’re descriptive, but they don’t always explain the cause. Genetics might. So yeah. Maybe one day autism will be more than a behavioral checklist. Maybe it’ll be a map—a genetic one. And maybe that’ll mean better understanding, better support, and better outcomes. But for now, I’ll just keep asking the questions. Because sometimes a mama’s gut knows exactly where the science is going.

From Then to Now: The Long, Winding Road with Rett

From Then to Now: The Long, Winding Road with Rett On my last post—the one I pulled over from Abby's old blog—she was 7. And I was… well, not. 😂 She’s now 20, and I am even older. Mind yer business. It would take me three lifetimes and an industrial-sized pot of coffee to list everything we’ve been through since then, but let me just say this: it’s been a lot. Abby has had a full spinal fusion. She’s lost her ability to walk. She’s had nine other orthopedic surgeries. (Yes, nine. And yes, I’ve earned every single one of these eye bags.) And even though she still has her spells—what we used to call Rett Episodes or tremors—she now also has full-on grand mal seizures. Because apparently Rett decided we weren’t tired enough yet. When Abby was two and all of us parents with same-age kiddos were first finding each other on MySpace (yes, MySpace) and then Facebook, I remember how much hope we had. A supposed cure was announced just four months after Abby’s diagnosis—within 2 to 5 years, they said. We clung to that. Back then, us young Rett parents talked about how hard and maybe even jaded the older parents seemed. They weren’t into the constant advocacy or the fundraising pushes. It wasn’t that they were hateful—they weren’t. They just… didn’t have the fire for it anymore. They just wanted to live their lives with their kids. I didn’t get it then. God, I get it now.

Rett Syndrome Episodes- Answers for Abby

I first posted a version of this when it happened. September of 2012. Abby was not quite 8 years old then. Things have chaged over the years but i felt it was important for this info to be available for or families dealing with this, whenever they may find us.

This past week we got a last minute call from the Children's hospital to get Abby in for a 48 hour EEG the next am. She was a trooper when they started.

Getting a little annoyed at this point. Poor baby 8 pullouts of her cap,bandages,and wires we had to quadruple wrap h

Rett Syndrome Episodes: Finally Some Answers for Abby After the hour-long, smelly removal of the wires... she was done. I’ve been thinking for days about how I’d write this post. I want to be thoughtful—especially to other families living with Rett Syndrome. While we experience many of the same things, Rett isn’t the same for everyone, and neither are the outcomes. So please know this is just our experience. No offense intended—only understanding. We finally got the answers we needed for our Abby, and I feel good about it. I wanted to share what we found out. Abby suffers from what are referred to as Parkinsonian Tremors and Rett Episodes—what we thought were seizures. Daily. When she wakes up in the morning, she goes rigid and shakes. Her body trembles like she’s being electrocuted. She looks confused. Her eyes open, close, roll. It usually lasts several minutes. When she wakes up at school or on the bus, it’s similar—but worse. She looks terrified. Her eyes dart back and forth. The tremors come in bursts, often misread as cluster seizures. Sometimes she even bursts into maniacal laughter. When she’s startled awake at night—by a cough, a door slam, any noise—her little body completely locks up. Legs go straight. Arms cross and clamp tight to her chest. She hyperventilates, shakes, sometimes cries out. During her stay, Abby had three of these episodes while hooked up to the EEG and video. Each one was witnessed by at least two nurses, and the middle episode was witnessed in person by the neurologist. He came in mid-morning and said: “Good news. Abby’s not having seizures. She’s having tremors and what we call Rett-episodes.” As a Rett parent, I’ll be honest: I’ve always felt like "Rett-episode" was just a fancy way of saying, “We have no clue what this is.” I was ready to fire back. But before I could say a word, he leaned against the wall calmly and said, “Just hear me out.” We talked for a while. And this is the theory we—mostly he—came up with. Here’s how I understood it: Dr: “MECP2 is the gene that makes the protein that helps neurons fire correctly, right?” Me: “Yes.” Dr: “When our girls are asleep, it almost seems like they don’t have Rett Syndrome. No breath-holding, no hand-wringing, no repetitive movements—right?” Me: “Yeah... that’s true.” Dr: “Okay, so picture this: When the brain wakes up, it’s like a spark plug firing. Or like kickstarting a motorcycle. Everything turns on all at once. You following me?” Me: (light bulb moment) “Yes.” Dr: “Her brain doesn’t work like ours. We wake up slowly—stretch, blink, yawn. But they get brain fires all at once. Neurons trying to fire, crisscrossing, some hitting, most not. That’s what causes the tremors. That’s why her body reacts that way.” Me: “But she also shakes when she’s excited. Or scared. Or happy. Or hurt. Or anxious…” Dr: “Do you think your normal brain fires differently when you feel those things?” Me: “Oh my God…” Dr: “All those emotions—excitement, fear, joy, anxiety—they also cause her brain to fire differently. And it manifests differently because her brain and body work differently. That’s why we also call it a movement disorder. Her brain wants her body to respond, but it can’t communicate it correctly. So we see tremors. Rett Episodes.” Me: (Looking at her. Bursting into tears.) “I get it. I get it.” Dr: “We’re not saying she’s never had a seizure or never will. But based on what we’re seeing here—she isn’t. I hope this gives you some comfort and understanding. Her brain is intact. The neurons just aren’t firing to the muscles properly. That is the tremor. That is the Rett Episode.” I felt I had to share this for those of you dealing with the same confusing stuff. I know there are kiddos out there who are more severely affected than Abby. But if this helps even one parent better understand what’s happening—I’m glad I wrote it. No one ever explained it to me this clearly. And now I get it. I finally understand what’s happening to my girl. Thank you for reading. —Terri & Abby

Guess Who's Back (and still a bit of a mess)?

Well, well, well. Look who crawled back onto the internet. It’s been a hot minute since I blogged. The last time I had a platform, I was sharing Abby’s story, raising awareness about Rett Syndrome, advocating, connecting, crying, and honestly—sometimes laughing when it wasn’t “appropriate.” Then, some perverted troll overseas took Abby’s photos and posted them on a disgusting site, and just like that, I shut it all down. That was 2014. I never fully got over it. And for a long time, I thought maybe I never would. But here I am. Older. Probably crankier. Definitely less filtered. And finally ready to write again—not just about Abby, but about me. About being a caregiver, a mom, a woman, a mess, a warrior, and everything in between. This blog isn’t polished. It’s not curated. It’s not full of “Top 10 Self-Care Tips” and sunshine. It’s raw. It’s real. It’s unplugged. Whackamama Unplugged is the space I wish I had when things got heavy. It’s where I’ll tell the truth. The funny truth, the painful truth, the exhausted truth, the “what the hell just happened” truth. Because caregiving isn’t cute. Grief isn’t linear. And life? Life is chaos with a side of dark humor and a gallon of coffee. So if you’re still here—if you’ve followed me before or you’re new—thank you. I hope this space feels like a deep exhale and a stiff drink. I hope you feel seen here. And I hope you laugh, even when the tears are right behind it. Let’s do this. – Terri, aka Whackamama ⸻