I often look back at kindergarten as the year the ground cracked wide open, leaving us on an island no one could reach or understand. At the time, I remember thinking it would never be this hard again—but life has a way of proving me wrong over and over.
There have been some battles I’ve spoken openly about, and—believe it or not—some I’ve kept to myself. That year was full of pain in the advocacy space, as I learned just how challenging things become during the transition to school age. At the same time, my dad passed away unexpectedly. A couple of months later, we were hit with the fallout from a failed business venture during COVID. As much as I would love to share every unjust stop on that path, I can’t. That trifecta of pain left me gasping for air every single day.
Still, I persisted—not just because I had no choice, but because the distractions gave me purpose. That movment helped me forget. It allowed me to mask my feelings, my grief, my pain, and march on for my daughters. That year, my days with Sienna were mostly spent in the car. The private school she started kindergarten in only allowed her to attend from 8–11 a.m.—a story that changed, as many of you know, as the year unfolded. Still, I refused to let Sienna miss out on what I knew she was worthy of: an inclusive life.
So I found an unorthodox way to make that happen. After doors slammed shut and emails went unanswered, I had no choice but to carve out a new path. I pieced together a patchwork of education for my daughter: afternoons filled with what her school had denied her—an inclusive lunch program at her old preschool where I became her teacher, and extra outpatient therapies (thanks to Medicaid). Teachers I knew shared materials. I bought curriculums tailored to her needs. I took more advocacy classes. And all that movement gave me momentum.
But in the quiet in-betweens—after drop-offs, in the car alone—I often came undone. One day, shortly after my dad passed, a song came on the radio: “For Your Soul” by Josh Ritter. I had to pull over. The lyrics broke me. The weight of everything I was carrying came crashing down:
“For Your Soul” struck me so deeply—and for good reason. (Quoted under fair use for commentary and reflection.)
Why did this song hit me so hard? For so many reasons. It made me face myself in the mirror and admit I’d been wrong about Sienna’s path. My fear about where she should go to school had contributed to where we ended up. I had to own my privilege. I had to stop letting fear hold her back.
That’s when we started half days at Fulton.
That same song forced me to face the harsh truth of raising a child with a disability in this country. I began to understand what so many veteran advocates had tried to tell me—what I used to assume was bitterness or inflexibility. But they weren’t wrong. Life had hardened them. The unrelenting need to prove their child’s worth in a world that doesn’t value them had built that armor.
It was then that I freed myself from the burden of being polite in my advocacy.
Because Sienna is worthy. And I am so tired of watching other children access spaces she should be in while she’s left on the sidelines. I’m tired of systems pretending to value inclusion when their actions scream otherwise. I’m tired of people pretending to care—and doing absolutely nothing to make change.
I’m tired of people in my own life claiming to care about my child while voting against her at every opportunity.
The reason we are in this political storm is because too many people look away. Too many people only care about their own backyards. Too many don’t realize the power they hold—just in their circles.
The other day, right after the final version of the Big Beautiful Bill passed the House, I found myself having to move again—buckling Sienna into her seat to pick up her sister from camp. I usually have curated playlists, but that day I was dazed—watching politicians celebrate the harm they’d unleashed. I turned on the radio. Just her and I, driving—like we so often do in the summer, since camps aren’t an option for her.
The DJ announced a live studio session with Josh Ritter. And sure enough—he played that same song. But this version? Slower. Acoustic. Raw. I was split wide open again. It could not be a coincidence. I even hit record on my phone to prove it happened.
Three years later, and after fighting so hard for this beautiful girl in my backseat, we’ve lost more than we’ve gained. After finding the best team for her at Fulton, the school board closed it—along with eight others. Fulton serves a majority minority population, low-income families, and a high number of students with disabilities. It also is an academic success story in the district. They shut it anyway.
And despite fighting for fair funding for true public schools—not charters, not private—our government just shifted even more limited funding to private schools. The same ones that locked us out in kindergarten. The same ones that already get too many state-funded vouchers now have access to federal ones. The same government that claims this is about “choice” just left us with none.
Despite months of screaming from the rooftops, the bill passed. That same bill gutted Medicaid.
The Medicaid that funds her in-school therapies? Cut. The state Medicaid that covers outpatient therapy because schools don’t have enough therapists? Now at risk too. We won’t know what survives until our state tries to clean up the mess Congress just made. Two-thirds of Pennsylvania’s Medicaid budget comes from the federal government.
Who will they prioritize?
Will you be worthy and yet Unworthy in the same breath…
Right now, it feels like it’s America’s soul being tested.
I’m begging you—stop looking away. Start listening to the people whose lives will be wrecked by what just happened.
These days, I oscillate between rage and despair. The fireworks? The politicians celebrating pain? The performative ignorance? It’s hard to look away.
But that song also reminded me—there’s no time left to spin our wheels. I will keep pushing. I will keep telling the truth. I will keep forcing people to recognize their privilege and the power it holds.
Ask yourself: What are you doing to bring about change?
This country is on fire. It won’t stop until we all grab the water we have—and throw it on the flames.
So many people believe they can’t do anything. I’m here to say: you can.
Tell people the truth about the bill—even if they don’t believe you. Don’t waste energy on those fully indoctrinated, but know this: many people in the middle were lied to. They voted for Trump because he sold them a lie. You can reach them. Speak with honesty and without shame when possible.
It’s not always easy—I know. Sometimes, venting is cathartic. Sometimes we can’t control our rage, and we have to give ourselves grace for those days. We have lost so much.
But also: take action. I joined the Democratic Committee. I took a class on running for office. I’m not sure if I’ll run, but it’s a start. At the No Kings protest, they told us: Engage in your backyard. Join the PTA. Watch council meetings. Testify. Post. And please—make sure you’re registered to vote.
In Pennsylvania, three Supreme Court seats are up this November. I’m not exaggerating: if you want free and fair elections, you have to vote. I’m voting by mail this year. It feels safer.
If policy overwhelms you, find experts or organizations to help you understand the ripple effects.
Hearing that song didn’t just split me open again. It forced me to confront a truth I’d been avoiding: I have let distractions shield me from fully facing my grief. It has been easier to stay busy, to let the chaos of crisis drown out the ache. Easier to cling to anger rather than sit with sorrow. But the rage that helped me survive is now standing in the way of healing. If I don’t allow myself to feel the depths of despair I’ve stored, the floodgates will burst on their own.
Lately, it feels like I’m finally there. It’s time to face the layered pain and sorrow these last few years have brought. Our circle has tightened, and in that, I’ve found a strange freedom. Freedom in releasing what no longer matters. Freedom in letting go of connections that couldn’t hold space for this version of me—the one carrying grief, fury, and the weight of too much loss. I need people who won’t look away from that pain. Who will sit with it, shoulder it, and fight alongside me, even when it’s uncomfortable. Freedom in holding tighter to the ones that do.
Thank you for reading. And for walking this road with me.
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