My sister asked me how she could pray for us specifically. Here’s what I’ve come up with.

As we lift up a warrior fighting EDS, Chiari, and/or Comorbids,
We are believing You for:

Knowledgeable doctors/surgeons
With hearts for the patients that are trusting them
Ears to hear them
And a willingness to unlearn and relearn

CSF leaks to seal
Cranial masses to disappear
Narrowed venous structures to widen
And cranial pressures restored to normal

Sticky filums to release
Stretched spinal cords to retract
Conus Medullaris’ to rise
And elongated medullas restored without consequence

Collagen restored without mutation
Intravertebral discs moving back into their rightful place
Laxity issues resolved
Straightened odontoids and clivus bones
And craniums to rise

Spines to straighten
Cerebellar tonsils to rise
CSF flow restored
And syringes (syrinxes) dissipated

Muscles reconditioned
Paralysis reversed
Vision completely restore
Ringing in the ears to cease

Habitual good night’s rests
No insomnia, painsomnia, chronic fatigue, or narcolepsy
Breathing issues corrected
Restless legs calmed

Nerves decompressed
Even vagus restored
Motility perfected
Inflammation gone
And pain a thing of the past

Depression replaced
Hearts seasoned with grace
Families restored
Where no one’s needs are ignored

Thank You, Father,
That despite all we’ve endured,
Your grace continues to be sufficient.
That none of this has taken You by surprise;
You knew all we’d face, yet You still chose each of us and call us Yours.
Our hope is in You and You alone,
The Author and Perfector of our faith,
We stand on Your promise that You still have a plan for each of us!
We might not know what it is or understand how we’ll get there,
but You are a good Father, and we trust You completely.

In Jesus’ Name, Amen!

(Note: This prayer was written to become a collaborative prayer, that we can add to as needed.)

It started with a headache,
But it didn’t go away.
Soon I would find out
That it was here to stay.

They all say, ‘the sun’s out,
go out and get some air!’
But my wobbly legs ache,
not to mention every strand of my hair.

Every Doctor says, ‘You look just fine!
It must be stress. Just get some rest.
Here’s more meds to try to help,
And we’ll run a bunch of tests.’

As time went on and
the headaches got worse,
No meds would work
This felt like a curse.

I couldn’t work.
I couldn’t clean.
I couldn’t cook.
Still not knowing what this means.

I wouldn’t give up
Until I knew what was wrong.
It’s a Chiari Malformation,
So you must stay strong.

So, I have a malformation
In the back of my head.
There isn’t a cure
So I plead and I plead.

Please take this away
And I promise I’ll be the best.
I want to live my life
Please just run some more tests.

“Brain surgery may help you
But it’s not a guarantee.
We will remove part of your skull
And you should be headache free.”

As I walked into surgery
I felt a sense of peace.
I just knew I would be better
And it put my mind at ease.

Two surgeries later
And my symptoms are still here.
There’s no more options or treatments
And my pain won’t disappear.

My new life is different
And not what I had planned.
I still don’t know my purpose
And I don’t know where I stand.

One day at a time.
That’s all I can endure.
So I’ll keep raising awareness
Until Chiari Malformation has a cure.