NO YOU ARE!

 

Last night’s Trump tirade wasn’t just ugly—it was revealing. Not because he said something new, but because he said something that exposes the emptiness of this man who holds power. A decent human being — much less the President of the United States — should understand basic empathy. Yet we continue to watch an individual who weaponizes cruelty and then sues anyone who repeats his words or expresses opinions about them. And somehow… he often wins.

Why? Does he blackmail people? Threaten them? Has he surrounded himself with individuals who are terrified of crossing him because they know retaliation will follow? Those questions aren’t paranoid — they’re logical. Look at the pattern. Look at the silence. Look at the fear.

Meanwhile, here is what life looks like for the rest of us:

We are working class family that lives paycheck to paycheck. Our medical financial burden is extreme, even with the help of Medicaid. We would be homeless without it. We have no golf days. We have no ballroom galas, even though Abby’s dad used to be a ballroom dance instructor. We don’t “pop into court hearings” or “host foreign oil executives.”

We wake up every morning and instead of checking stock portfolios or legal threats, the first thing we check is that our intellectually disabled daughter — who Trump and Elon Musk casually refer to as “retarded” — is still alive. We’ve done that every day for nineteen years.

And we are not alone.

There are millions of families like ours — silent, exhausted, vigilant, loving, compassionate — living the reality Trump doesn’t even know exists.

This is the same man who expressed awe and confusion at the concept of groceries. The same man who couldn’t believe that popcorn comes in a bag. It was like someone explained quantum mechanics to him in Sanskrit. Watching him marvel at normal life was like watching a man confused by doorknobs.

This is also the man who has refused transparency on grades, taxes, medical records — things every other president has always done as a matter of accountability. Transparency is not meeting secretly with the Taliban. It is not whisper-deals with Putin. It is not repaying Saudi favors behind closed doors.

And I need to speak plainly now.

Every time Trump or Elon — two of the most powerful men in the world — uses the word “retarded,” it is a punch in the gut to every person who has loved someone with a disability. It is cruelty. It is ignorance. It is dehumanization.

Let me tell you the story of when I first spoke up.

I was in Walmart, Abby in the cart, younger and small and drooling and eating her hands — a hallmark of her condition. A teenager and his father were nearby, laughing, shoving each other, calling each other “retarded.”

I leaned in and said, “Hi. I’d like to tell you how offensive that word is. It is as offensive as any other degrading term. By medical definition, my daughter is retarded. By society’s definition, that would be you.”

As I walked away, other customers applauded.

I was shaking, crying — but I had spoken up.

And now? It’s time.

It is time for this country to speak up.

Trump, Greene, Hegseth, Kennedy — God help me I hate even having to put a Kennedy in that category — and the whole carnival of self-serving propaganda politicians need to go. Because when they do, the dominoes fall:

Education reinstated

Departments restored

Civil norms return

Competence returns

Diplomacy returns

Truth returns

This era — God willing less than four years — must someday be remembered as the point where America said “Enough.” Where hate met resistance. Where cruelty met conscience. Where ignorance met reality.

Let this be the lesson written into history:

Hate never wins. Compassion does. Humanity does. Truth does.

— Terri V

Transition Hell-Again

The Five-Month Runaround: When Coverage Breaks Down for Basic Medical Needs

Starting in June—right around the time Abby was “almost 21”—everything that had worked for years suddenly stopped working. Orders that had always gone through without issue were suddenly “pending,” “under review,” or “awaiting prior authorization.” For five long months, we went without essential items: her enteral nutrition, G-tube supplies, bandages, gloves, chux, and briefs.

Abby has been on the Community Supports Waiver since her mid-teens. For years, the system made sense: Medicaid covered what insurance didn’t—things like briefs, gloves, wound care, and formula—and the waiver covered the extras such as wipes, additional tubing, and syringes. But as her 21st birthday got closer, something shifted. Without warning, we were told prior authorizations were required for everything, yet no one could explain why. Even though I called insurance nearly every day and informed our SC of the issues my concerns were met with a shrug or what seems like complete lack of training or knowledge.

---

Where Everything Went Off the Rails

By June, the “almost 21” rule changes began. Insurance said it was Medicaid’s job or said something different every single time I called, or it changed with each representative I spoke to. Medicaid said it was insurance. The DME said they were waiting on approvals, or denials. Each call led to another explanation that didn’t make sense—and still no supplies. I faxed, called, and emailed for months while the clock ran out on every refill and reorder.

Eventually, someone at the DME finally told me the truth: once Abby turned 21, briefs and certain medical supplies had to be billed under her waiver—not through insurance or Medicaid anymore. That single sentence explained everything no one else had bothered to say. I don't feel like the correct info was withheld from us. I feel like the system is that broken. I've said before that there is a real sense of sucks to be you, or that she doesn't matter anymore because she wasn't still supposed to be here, so why bother ? Harsh? I can be sometimes. This person is not a number or a file and she and people like her deserve the same care for their entire life span.

They don't suddenly become continent once they turn 21. Their brains and bodies don't suddenly work. Look, I'm no dummy. I get that the issue is how much and where the funding will come from. What I don't get is that no one seems to know or comprehend their own policies. That is unacceptable.

---

What We Were Finally Told

• Before age 21: Medicaid covered medically necessary supplies (briefs, gloves, wound care, enteral nutrition) while the waiver covered supplemental items like wipes and spare tubing.
• After age 21: some of those basic items—especially incontinence products—shifted to the waiver’s responsibility for payment.
• No one—Medicaid, insurance, or the DME—seemed to know when or how that transition was supposed to happen, so nothing got billed correctly for months.

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How It Played Out

1. June: Everything started going “on hold.” I was told prior authorizations were being processed and to wait.
2. July–August: Medicaid said insurance needed to approve first; insurance said Medicaid was responsible; the DME couldn’t move forward without a decision.
3. September: Our new PCP resubmitted paperwork to restart briefs—one month was approved after another full authorization process, but no other supplies came through.
4. October: We were finally told that because Abby has a waiver, the DME could no longer bill insurance or Medicaid for briefs. The account for those items would be closed, and future orders had to go through the waiver directly.

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Why Families Deserve Straight Answers

This wasn’t about misunderstanding coverage—it was about not being told that the rules were changing. No family should have to discover midstream that years of coverage are suddenly being rerouted through a different system. The cost of that silence was five months without essential care. Trust me when I tell you that I can not possibly recount how many times I was told that things would change once she turned 21. each and every time I asked how, and in what way, the person relaying that information had no details.

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If You’re Facing the Same Confusion

• Ask your DME directly if any of your supplies are shifting to waiver coverage after age 21.
• Confirm with your service coordinator what the waiver will cover and how billing should be submitted.
• DO NOT be afraid to ask for a supervisor or director for fear of getting in trouble or hurting someone else's feelings.
• Keep a written record of every call, name, and date—especially if they say your account is being closed or “transferred to waiver.”
• Request written clarification whenever possible. “We’ll look into it” isn’t enough when someone’s health depends on the answer.

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My Takeaway

Abby went five months without the basics—not because we didn’t qualify, but because no one took ownership of explaining a policy change. Families like ours deserve more than a paper trail of finger-pointing. We deserve clarity before the supply chain stops.

This is why I keep speaking up—because no caregiver should have to learn policy by trial and error.

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Note: This post reflects our experience in Missouri under the Community Supports Waiver and the guidance we eventually received. Coverage rules vary by state and program, so always verify with your service coordinator and DME how your supplies should be billed once your family member turns 21.

No Kings, No Crown and No Seeds

 Except for the seeds of hatred some need to sew into every moment.

Yesterday left me buzzing and aching all at once. We were a small crowd in Liberty, Missouri, small, but mighty — waving, chanting, sweating, and soaking up every honk and peace sign from passing cars. I felt something I haven’t felt in a long time: proof that there are still more of us than them. By “us,” I mean people who want things to be legal, kind, and fair. The rest is noise.

But here’s what’s eating at me. After the rally, I scrolled through social media and saw a post from someone who used to be a friend — one of those deep-in-the-MAGA-hole types. She shared a photo from the huge gathering in Boston, the one with thousands of people filling the streets. Except she and her friends decided it wasn’t real. They said the photo was fake — that those weren’t people, they were sprouting seeds in a field. Seeds. I sat there staring at my phone, trying to understand how anyone could look at an ocean of human beings and see botany.

That kind of denial hits different. It’s not just misinformation anymore; it’s like we’re living on different planets. For them, anything that doesn’t fit their version of the world must be fake. It’s safer to believe a silly lie than face the possibility that maybe — just maybe — their side isn’t as big or beloved as they think. I keep thinking, they’ve forgotten how to see joy without suspicion.

Later, a friend showed someone else a photo from our own protest — two people in inflatable costumes running toward each other and hugging. We howled with laughter when we saw it. Those ridiculous costumes were the perfect “FU” to all the talk about “violent Antifa thugs.” Turns out the radical left isn’t hiding in the shadows; we’re just sweating inside polyester inflatables, hugging it out for democracy. But again — no laughter from the other side. Just confusion. Fear. They couldn’t see the joke because everything has to mean something dark now. Humor feels dangerous to people who’ve forgotten how to laugh at themselves.

I’ve tried to make sense of it. How can the same people who rail against “the elites” worship a man born on a gold toilet? How can they call him a “blue-collar billionaire” when the only collar he’s ever worn is starched and imported? He’s never carried groceries, fixed a leaky pipe, or waited for a paycheck to clear — and yet he’s their hero. They don’t follow him because he’s like them. They follow him because he fights for the version of themselves they wish they could be: loud, untouchable, unapologetic, and immune to consequence. He performs their anger while living off the very system they hate. And still, they cheer.

And before anyone lumps this all together — I have plenty of conservative and Republican people in my life. We don’t agree on everything, but we get each other. We can talk because we actually listen, or we know when it’s better to steer around the topic altogether. None of them are the kind of people who live on conspiracy theories or need to scream to feel seen. They care about their families, their faith, their country — just like I do. So when I talk about “them,” I’m not talking about every Republican or every person on the right. I’m talking about the ones who’ve let hate replace thought, and paranoia replace patriotism.

So yes, yesterday brought me peace and pride. We were out there with our homemade signs, our chants, and our laughter, and for every flipped bird there were fifty waves and a hundred honks of support. But it also left me grieving. Because every time someone shares a meme about “fake crowds” or sneers at people in Unicorn suits, I realize how far gone some of our neighbors are. We’re not arguing about politics anymore — we’re arguing about whether our eyes still work, our ears still hear and whether rhyme and reason really do still exist.

I don’t know how to bridge that gap yet. But I do know this: we’re not going anywhere. We’ll keep showing up — with humor, with hope, with inflatable hugs — because kindness and truth still matter, even when they’re mistaken for something else.

NO Kings Liberty USA

 

We were small, but we were mighty. 💪

In the heart of Liberty, Missouri, love stood taller than hate.We saw it. We heard it.

And we answered — with peace signs, open hearts, and voices full of hope. ✌️❤️

I met a 3 year old and a 93 year old.

What a day to remember.

Out in the real world, beyond the noise and the fear,

we are stronger.

Today proved it — there are more of us than there are of them.

So much love, kindness, and real patriotism in one place.

People from every walk of life, standing shoulder to shoulder,

holding signs that spoke truth, not hate.

It reminded me that courage doesn’t have to roar —

sometimes it just stands quietly, holding a poster in the wind,

smiling back at anger with compassion.

---

Although I live in Kansas City, Missouri, my daughter’s doctors and social programs are in Liberty, so I’m there almost every day of the week. It’s a nice little suburb — one where I’ve rarely ever experienced rudeness. But it’s also a deeply red city, and because I suffer from severe anxiety, the thought of being in a protest crowd — especially one by the street, surrounded by strangers with signs — had my heart racing.

I went with a friend I met years ago while speaking on a panel for a class graduating from a physical therapy program. She invited a few people she knew from her church and from the special needs community. After we parked, we walked up to find a twerking dinosaur and an American eagle dancing side by side. That sight alone made me breathe easier.

There were people from all walks of life, standing side by side — just wanting to live side by side. Without hate. Without anger. Without judgment. In peace.

The most poignant moment of the day came when I noticed an elderly man standing alone behind me. I turned and asked how he was doing. He wore a Vietnam veteran cap. He looked me in the eye and said,

“I fought in Vietnam. I was hurt. I lost people I loved. And it sure wasn’t for this.”

I didn’t know what to say, except to thank him for his service and shake his hand. I’m not great with strangers or crowds, so I went to my friend — knowing she came from a military family — and told her what had just happened. Without hesitation, she turned on her heel, went straight to him, and within seconds they were hugging and crying.

Thank God she was there to hear that man and offer her heart and understanding.

I don’t want to be part of any world that shows cruelty to another human being because someone on TV told them who they should or shouldn’t live peacefully beside.

---

And in the end…

Yesterday reminded me that courage doesn’t always look loud or fearless.

Sometimes it’s shaky hands holding a sign anyway.

Sometimes it’s showing up when your anxiety tells you to stay home.

Sometimes it’s an old veteran finding kindness in a stranger’s smile.

That’s what patriotism really looks like — not flags or slogans or shouting matches,

but hearts that choose humanity over hate.

And for one small moment, on one small corner in Liberty, Missouri,

we did exactly that.

EYE gaze Communication. Rockin it

 

Abby’s First ACCT Therapy in Years

Today, Abby had her first ACCT therapy session in years. She’s had a Tobii eye gaze device since around third grade, and this will be her fourth device. They’ve come a long way — from big, heavy, clunky machines that only worked for a few hours before needing two huge batteries swapped out two or three times a day, to now being run on a larger iPad.

The team at school has been telling me about this new device for about a year, but with everything Abby’s been through lately — and with her aging out of the school system — I just wasn’t up for another fight for anything.

We recently went three months without her food or supplies being paid for because insurance and the system absolutely stink. The rage I feel sometimes, while trying to be the perfect mom and advocate, is impossible to express. Now that she’s turned 21, they’ve decided to put all her food, enteral supplies, briefs, and more on hold while they get yet another prior authorization. For a kid with a total and permanent disability. But I digress.

Anyway, the last time we went in for a device, I was so frustrated. We went from her being able to go in, say she was thirsty or wanted to eat, and get the approval — to having to try every device available for months and prove over and over that she could use something she’d already been using for a decade and a half before anyone would sign off. I just didn’t have the patience or the energy for another round of that.

Today, though, I swallowed my helicopter-mom advocate pride and said, “Go ahead and do it like you would any other kid. Set it up and see how she does.”

I’ve never let Abby use one of their pre-made vocabularies before. I’ve always programmed every single button on every page — every picture, every link. I think it’s important, with symbol-based communication, to always use the same picture for the same word or phrase. That’s her language. Abby’s language has always been Boardmaker — besides the ESP and eye gaze, of course.

Today they used a full board with what’s called TD Snap. It’s very pre-programmed, and I always assumed it would be too much for her — not personal enough. Once again, I underestimated that girl.

I sat next to her wanting to scream when she asked for Taylor Swift and then Ed Sheeran. The tears came when I asked if she liked it and she said, “I like that. This is great. I love you, Mom.”

By the end of the first visit, the SLP was already asking which stand we wanted and said she was ready to start her report to get the device ordered.

The first visit!

She’ll still go to therapy each week while we get it customized and add vocabulary specific to her, but my girl did it! The first time!

Fly, baby girl. Fly.

I’m so proud of her I could run down the street screaming. I can’t believe I ever thought she might regress after school ended. Not this chick.

💜 Happy Rett Syndrome Awareness Month. 💜

October: Rett Syndrome Awareness Month — Choosing Joy When the World Tells You Otherwise

 

Every October, my heart sits a little heavier. It’s Rett Syndrome Awareness Month and the month she was diagnosed, and as the parent of a daughter with Rett, I want to tell you all the things most people don’t know — or maybe can’t imagine.

When you have a baby, you dream. You imagine the first steps, the bike rides, the school dances, the friendships. You build a future in your head before they can even say your name. And then, one day, someone in a white coat looks at you and says words that shatter all those dreams. Rett Syndrome.
“Take her home and make her comfortable.”

You hear that and think it must be a mistake. Surely they don’t mean never. Never talk. Never walk. Never eat by mouth. Never ride a bike. Never sleep through the night. Never live independently. Never have a prom. Never get married.

Never. Never. Never.

You go home with a baby who looks perfectly healthy — but whose future has just changed in ways you can’t even begin to understand. You mourn the life you thought she’d have, and somehow, you mourn while she’s still right there, smiling at you. Still your baby. Still here.

But then… something happens.
You start seeing the world differently.

You find joy where most people would miss it — in the sparkle of a giggle, in the sound of a happy squeal, in the tiny victory of a relaxed hand. You realize that “never” doesn’t mean what they think it means. She does dance — in her father’s arms, with that grin that could power the sun. She does ride a bike — an adaptive one, with the wind in her hair and pride written all over her face. She does have friends — the kind who drop to their knees to play Dora when the prom lights are too bright, who see her, not the chair.

You learn to celebrate differently. To grieve differently. To live differently.

This life — the one that was supposed to break us — humbles us instead.
It strips away everything fake and shiny and shallow. It teaches us to see joy in the cracks, gratitude in the hardest places, love in its purest form.

Because every single morning, I’m greeted by the most beautiful smile — one that says I’m happy you’re here.
From someone who can’t walk, can’t talk, can’t eat, can’t sleep, and yet knows love more deeply than anyone I’ve ever met.

So, when October rolls around, I don’t just want people to know what Rett Syndrome takes. I want them to know what it gives.
Perspective. Humility. Strength.
And the kind of joy you only find when you stop chasing normal and start choosing love.

They told us it would be the hardest thing we’d ever do.
They were right.
But they forgot to tell us it would also be the most beautiful.

The Power of a Lie and the Cost of Believing It

 The worse things get in this country, the more I find myself fact-checking everything. Not just the big headlines, but even throwaway comments. And you know what I’ve discovered? Nine times out of ten, the shocking thing people are arguing about isn’t a statement that was ever actually said. It’s a headline spun out of a rumor. It’s a screen grab with no source. It’s a social media post written by one person who decided to stir the pot — and by the end of the day, that one post has been shared thousands of times. By the end of the week, millions believe it as fact.

Think about that for a minute. One person. One post. And suddenly, it becomes “truth” because enough people repeat it.

Take this as an example: imagine a woman singing a beautiful song on stage with her daughter — a moment that should be nothing but joy, art, and family. You click into the comments expecting love and encouragement. Instead, what you see is hate. Death threats. “RIP” messages tied to someone else’s tragedy. And all of it born out of something that never even happened. Just a rumor. Just one troll’s lie, amplified by a culture that thrives on outrage. This is nothing new. Think Emmet Till and torches and pitchforks. Its not new but its getting worse. If we had had social media decades ago I truly believe we would no longer be here or be reduced to a third world country.

This is what we’ve let ourselves become: a society that’s too quick to believe, too quick to share, and too slow to stop and ask, Is this even true?

We’ve got to do better.

We have to start thinking for ourselves instead of letting headlines and hashtags tell us what to feel. We have to stop treating strangers online like enemies just because somebody told us they were on “the other side.” Because the truth is, most of us want the same things: safety, love, health, hope for our kids. The things that matter most are not red or blue, right or left.

So here’s my wake-up call:
- Check the source.
- Ask yourself, “Do I actually know this is true?”
- Refuse to spread hate until you’ve seen proof with your own eyes. Then try to flip whatever it is into something we can learn from. Our children are watching!

Because if we don’t start questioning the noise, we’re going to lose sight of the music — those rare, beautiful moments when people come together in joy instead of tearing each other apart in anger.

Let’s choose the music. Let’s choose each other.