07/20/2025
This is why Hope Torchlighters & Hope International Church Buddy Break exist because parents and caregivers MATTER!
To the Church: If You Want to Welcome Us, Start Here
A message from a Rett Syndrome parent who’s still standing and still believing
Let’s get one thing straight—
the Holy Spirit doesn’t care if my kid can walk into your sanctuary
or if she rolls in with a feeding pump, splints, and a tired parent behind her.
The Spirit doesn’t check for perfect behavior, noise control, or clean church clothes.
He doesn’t care if I show up in tears,
with meds in my pocket
and exhaustion in my eyes.
He just wants us here.
We’re not looking for a polished welcome.
We’re looking for a place that sees our daughter
not as a disruption,
but as part of the body of Christ.
Whole. Beautiful. Worthy.
You say everyone’s welcome—
but sometimes that gets complicated when “everyone” looks like a child with Rett Syndrome.
Who might make noises during worship.
Who might need space to stretch.
Who might have a seizure in the middle of the sermon.
We’re not asking you to be perfect.
But please don’t be silent.
Don't stare. Don't whisper. Don't move away.
Move closer. Ask our names. Ask how she communicates.
Ask how to help.
Because for families like ours, just getting to church is a spiritual battle.
Between oxygen tanks and seizure logs, between mobility and medication—
we’ve fought to show up.
And sometimes?
The hardest part isn’t the diagnosis.
It’s walking into a room full of people who don't know what to say
and choose to say nothing at all.
Jesus never did that.
He saw the hurting.
He moved toward them.
He didn’t make the blind man prove his worth.
He didn’t ask the paralyzed man to wait outside.
He didn’t tell the bleeding woman to come back when she was clean.
He touched them.
He welcomed them.
He restored their dignity.
That’s the gospel.
That’s church.
That’s what I hope we can be.
So please—stop trying to “fix” us.
Stop worrying if my daughter will ever speak.
Or if I’ll ever look “put together.”
That’s not your job.
Let God do the healing.
You?
Just be the welcome mat.
Open arms. Soft heart.
That’s the assignment.
Because the Rett journey is sacred and hard.
And sometimes, we just need a pew to cry in,
a hand on our shoulder,
and a church family that doesn’t flinch at feeding tubes or meltdowns.
We’re not asking for pity.
We’re asking for space.
Because my daughter may never say “Amen” with her mouth—
but she says it with her life.
And if you listen closely,
you’ll hear the voice of God through her silence.
So if you're a church who means it when you say “All are welcome”—
prove it.
Make room for the wheelchairs.
Make room for the noise.
Make room for the parents who are just trying to survive Sunday morning.
And then love us like Jesus would.
Because sometimes the most anointed worship
comes from the family in the back row
with trembling hands, tearful eyes, and
a faith that’s held together by grace and sheer will.
And that, Church, is holy ground.
