Schizencephaly Awareness

Schizencephaly Awareness Schizencephaly Awareness day founders and families

12/07/2025

“Don’t let your child’s diagnosis become your personality”

It is something that is said often, given as advice.

That advice is unrealistic.

Hearing your child’s diagnosis is life altering, it changes everything you thought you knew before you heard those words.

It changes how you view the world and what you once thought was important.

It changes how you carry yourself through unimaginable obstacles.

And it causes you to live in fight mode because flight mode isn’t an option.

That diagnosis,

It made you feel such an indescribable pain that you don’t allow anything less than to break you.

That diagnosis,

It is a part of you.

You couldn’t stop it from changing your personality if you tried.

And you shouldn’t.

That diagnosis made you unstoppable,

It made you love harder than you knew possible,

And it made you strong.

The type of strong you envied in others,

the type of strong you never could have imagined yourself capable of.

That diagnosis,

It made you everything that you needed to be for your child.

So, let it.

Let that diagnosis become a part of your personality.

Because that personality is the one that keeps you going every single day.

Written by: Carla Moore from Payton's Path

11/17/2025

11/15/2025

"He doesn't deserve what is happening to him now, but he deserves love from people."

Family seeks Christmas cards for terminally ill teen's final holiday. ⤵️

11/15/2025

I have to outlive my child.

I know it sounds dark.

It is dark.

But it’s my reality.

It’s the reality of most medically complex parents.

We don’t want to live forever.

We just want to live longer than our child.

We have to.

Because nobody else knows them the way we do.

No one else knows their sounds, their cues, or those tiny signals that mean something’s wrong.

No one else knows the meds, the machines or the day to day routines.

No one else knows them like we do.

We know how complicated their care is.

We know how easily the world would fail them.

They need us.
They need our love.
They need our level of care.

A world without my child should be my biggest fear,

But the truth is a world where she is without me is far more terrifying.

So…taking care of myself isn’t about self care.

It’s about survival.
Because I HAVE to be here.
For as long as I possibly can.

It’s a heavy thing to carry, loving someone so deeply that your biggest fear isn’t your own death… it’s dying before them.

This is, by far…the hardest reality I carry as a medically complex parent.

Written by: Carla Moore from Payton's Path

11/08/2025
09/10/2025

Just my two cents.....

Caregivers deserve more than survival mode.

You may not agree, but you also probably have never experienced this life.

Be thankful you have no idea what survival mode is.





A Journey For Avery

09/08/2025
09/07/2025
09/05/2025
08/20/2025

Parenting a Child with Special Needs Is Nothing Like Welcome to Holland

If you’re a parent of a child with disabilities, chances are someone has handed you Emily Kingsley’s poem Welcome to Holland. It gets passed around like some universal balm, as if those words can soften the blow of a diagnosis or wrap up our entire reality in a metaphor about tulips and windmills.

But let me be clear: parenting a child with special needs is nothing like Holland.

It’s not a vacation. It’s not a scenic detour. It’s not “different, but still beautiful.” That poem is a fairytale that might make outsiders feel better about our reality—but for those of us living this life every single day, it falls painfully short.

It’s Not a Missed Flight—It’s a Free Fall

Welcome to Holland wants you to believe this journey is like expecting Italy and winding up in Holland instead. But when I got my child’s diagnosis, it didn’t feel like a detour to a neighboring country.

It felt like being shoved out of an airplane without a parachute. You hit the ground hard. The impact knocks the air out of you. You’re shattered, bleeding in ways no one else can see. But you don’t die—you get back up, because your child needs you to.
This isn’t a “change of plans.” This is survival.

It’s Not a Sightseeing Tour—It’s a Battlefield

The poem paints this picture of simply adjusting expectations and learning to enjoy new scenery. But this life is not strolling through museums—it’s combat.

Every day is a fight:
Fighting for insurance approvals.
Fighting for services that are constantly cut.
Fighting school systems that see your child as a budget line, not a human being.
Fighting exhaustion while never having the option to tap out.
You don’t return from battle with souvenirs. You come back with scars.

The Loneliness Is Real

Kingsley suggests that if you just open your eyes, you’ll find Holland has its own community of travelers. The reality? Most of us are walking this road alone.

Friends fade. Invitations stop. Family doesn’t always get it. Society moves forward, and you’re left behind—living a life most can’t fathom. Yes, there are others in the trenches too, but the day-to-day weight of this journey is often isolating beyond words.

There are no tulips here. There’s silence, there’s distance, and there’s the ache of watching life move on without you.

The Poem Minimizes the Grief

What I resent most about Welcome to Holland is how it diminishes the grief to something as simple as missing out on Italy.

This isn’t about canceled gondola rides. It’s about mourning the life I thought my child would have. It’s about the milestones that may never come, the uncertainty of the future, and the brutal truth that love doesn’t erase suffering.

The grief doesn’t vanish—it evolves. It comes in waves, weaving itself into joy, pride, resilience, and heartbreak so tightly they’re inseparable.
But don’t tell me this is a “different kind of beautiful.” That minimizes the cost of what we carry.

Why Welcome to Holland Is Dangerous
The reason so many professionals love handing this poem out is because it comforts them. It gives them a tidy way to explain away our grief and reality without having to sit in the discomfort of it.

It suggests we’re all on some kind of accidental holiday—just not the one we signed up for. But we’re not tourists. We’re warriors. Survivors. Parents who have been drafted into a life we never chose, with no exit strategy.

Welcome to Holland doesn’t honor that reality. It sugarcoats it.

The Real Story
Parenting a child with special needs is relentless. It’s terrifying. It’s exhausting. It’s isolating. It’s also filled with a love so deep and consuming it often feels impossible to put into words.

But it is not Holland.
It’s waking up in a land with no map, no compass, no guidebook—where you build the roads yourself, where storms come without warning, and where every small victory feels monumental because of what it took to get there.
It’s not tulips and windmills. It’s scars, grit, grief, and resilience. It’s the kind of strength you don’t know you have until it’s the only option left.

So don’t hand us pretty metaphors. Don’t reduce this life to a postcard. Don’t try to sell us on Holland.
Give us resources. Give us understanding. Give us people who are brave enough to walk beside us in the trenches.

Because this isn’t Holland. It’s something much harder, much deeper, and much more real. And the truth is—we deserve for it to be seen that way.

“We’re not tourists here—we’re warriors.” Stacy Warden — Noah’s Miracle

Available on Amazon: https://www.amazon.com/dp/B0FP9YB4V2?ref_=pe_93986420_774957520

Copyright & Creative Commons Notice
This essay is © [Stacy Warden], [2005]. All rights reserved. It is licensed under a [Creative Commons License, e.g., CC BY-NC-ND 4.0]. You are welcome to read, share, and distribute this work non-commercially, provided you give appropriate credit, do not alter the content, and do not use it for commercial purposes. Any other use, reproduction, or distribution requires prior written permission from the author.

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