Archive of ‘Option EDS (the retreat)’ category

Vulnerable.

by

Warrior
“‘What is it you’re frightened of?’
asks my warrior side.
What fills your heart with such dread?
‘What happened to your coat of bravery you wore so confidently?’
I feel like a deer sometimes, I answer.
I’m not always like you.
I want to lie down in flower-kissed pasture,
let my eyes close against the sun.
I don’t want to be poised for battle, I say.
My buttons can’t always cover what’s inside.
Don’t be disappointed by what you see, I plead.
More kindly now, my warrior side asks,
‘But what is it you are really frightened of?’
The possibilities of the inevitable,
I manage to say in my soft deer voice.”
-Beverly Hyman-Fead, Patient Poets: Illness from Inside Out, Marilyn Chandler McEntyre

Today I’m the deer.
I want to lie down in a safe pasture with the sun in my face and cease to fight.

I’m terrified of Chiari. It was the first enemy. Both Danica and I slayed her. She’s resurrected and attacking my unsuspecting Laney girl without warning.

I’m angry from battling for insurance coverage for necessary imaging for Delaney and now the process of appeal for the ones denied. Maybe it’s just a cover for how mad I am this is happening at all.

I’m frustrated from fighting for care for an injury behind a tooth that has taken me to six appointments at four different dental specialists with no resolution.

I’m afraid of how sick I feel as persistent infections rage and my brain burns. There is no plan for treatment.

I’m devastated by the re-tethering of my spinal cord for the third time. I’m losing the feeling in my legs and feet. My neck is pulled backwards when I straighten my spine. I’m finding ways to curl up when I sit on the couch or in bed to make the stretching and burning less. If I sway in my belly hardens with contractions like labor. I’m not emptying my bladder fully because I cannot feel it. I’ve had two UTIs in the past month as a result. I will not seek surgery again until I’m unable to walk. I cannot.

I’m grieved by the hard decisions to close two doors to people and places I was sure God called me to this year. Things I wanted to prove I’m turning this pain into purpose. Things I wanted to prove I am doing something else with my life than just this surviving.

I’m heartbroken by the loss of intimacy with several close people in my life. I risked talking about my hurt. I forgot it’s safer to keep it to myself.

I’m lonely in the way being chronically ill always will be. Because only someone enlisted in the same war can crawl into the foxhole with me. But they can’t turn to look me in the eyes because our enemy is relentless (and their neck is most likely also fused). There are so many beautiful people waving flags and cheering from a distance. But I need triage instead of a parade. You can’t see that from over there.

I’m furious my children need a foxhole too.

I’m pretending like a good soldier. My husband needs me to say I’m okay. My girls need to feel I’m okay. If the bile starts to come up I swallow hard. Remember Monica. If you say you are hurt too loudly people may decide to walk away.

I’m ashamed. After all God’s faithfulness to my family and I how can I feel this hopeless about where we will live in a few months? This need to know where we will shelter trumps everything else all the time. Dan emailed today, “When are we going to talk about moving?” I’m paralyzed. This is just one more thing I am supposed to figure out.

I’m exhausted. Every night I sleep less my joints get looser and my body weaker.

I’m just so very tired.

Chronic illness is fraught with imagery of battles that might be won or at least an enemy that could be held at bay. We call ourselves ‘Warriors’ in the fight for big and little things in our lives especially access to care. This rubs against a faith that bids us to surrender to the will of God and His perfect plan knowing that might include long term suffering and even death for His glory. My mind and spirit are confused and fatigued by both.

I just want to lie down.

I didn’t prepare the FedEx with twenty pages of notes and reports and the discs of Delaney’s scans for the neurosurgeon in New York. I couldn’t write an encouraging note to someone else to shift any of this weight into kindness even though it’s what saves me most of the time. I didn’t make the pasta dish I promised the girls I would. I texted Dan I simply cannot pick the girls up from school even though it’s his gym day.

I’m paralyzed.
I wish I could scream.
I wish I could run.
I wish I could defect.

Instead I hear a tiny whisper of truth from a Word hidden in my heart.

“The LORD will fight for you; you need only to be still.”-Exodus 14:14

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Fellowship of The Broken

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“Never be afraid of broken things–because Christ can redeem anything.”-Ann Voskamp, The Broken Way

I should have stayed home. My very flared and untreated Autoimmune encephalitis/PANS symptoms have kept me from restorative sleep. My face twitching. My shoulders dislocating. My brain swelling. My heart hurting. My neck screaming.

I pushed hard to make it to my first memoir class at The University of Arizona Poetry Center last night. Five Monday nights I’ve committed to learning about this thing I know I’m called to do. I want to do it well. Writing comes instinctively, but writing well comes from practice and a community of others who know more than I do. I drove to downtown Tucson and sat around a cluster of tables for over two hours. Reading aloud. Writing exercises. Sharing and discussing. I tried not to strain my neck, but it’s rude to keep your back to someone continually or to not look at them when they are speaking. I wish I could wear a sign. People so kindly ask, “Do you have a stiff neck?…Were you in a car accident?…So, you can’t move it at all?” It’s exhausting. The class was everything I’d hoped and more. I drove myself home in the dark. This is big, brave stuff. A year ago I couldn’t have imagined trying to do anything this independent and long term. I was excited and grateful. But I was hurting.

This morning was week three of a Tuesday morning Bible Study at the church we are attending. I missed last week, because I was in bed all day. It was one of a hand full of days since we moved here I could not move through the pain. I wanted to go so badly. I’d done my reading. I missed the ladies I met at week one. I rose early, got dressed and did my hair. If you know about the spoon theory you understand this getting ready to go somewhere can be more exhausting than the going, especially on bad days. I saw my family off to school and work. I looked in the full length mirror. In my head I heard, “But you don’t look sick.”

It’s hard when no one knows your story. I don’t want to lead with the pain. The version I’ve been telling is a quick synopsis. I was very sick for a long time. I had four shunt surgeries in 2018. The last one was August 12th, and we picked up and moved here just two weeks later. It sounds crazy because it is. People can’t believe we came here without Dan having a job. They can’t believe I took the risk of losing insurance and access to treatment. They can’t believe much of the story, and I’m giving them the cliff notes and leaving out the miracle provision that told us to go. A variation of this conversation happens every time I meet someone. I want to leave the hard parts out and shine it all up. It’s grace. Monica, don’t forget to tell them it’s ALL grace!

I’d made it almost all the way through our study when the dear leader looked at me. There were already tears balancing on my eyelids threatening to fall. I was holding my left shoulder in place with the opposite arm. She noted I’d been quiet and asked if I wanted to share. Others had been talking about finding time to pause and be with God. Most communicated the difficulty of juggling all they had to do with the desire to meet Him regularly. I began to cry. I said something silly like, “I want to be the one who brings the cookies.” I want to be doing and serving. I want to host another Option EDS-the retreat this May in the Outer Banks. I want to help others find the most well life by building a non-profit here that will support a respite house. I’ve had a decade of quiet time. Hours and hours of time alone with God in prayer and in His word. I want to finally tip the scales of all the love my family and I have received and somehow become the abundance for others. What if I could somehow earn all that love on the backend. Then your scandalous support wouldn’t have been wasted. Yes, God, that’s what I want to do.

I chose the class because it is a study through Ann Voskamp’s The Broken Way. I read this book when it released in November, 2016 at the bedside of my Danica Jean at Johns Hopkins. I’d had major fusion just five weeks before her scary brain and spine surgery. I was utterly broken and terrified. My copy is marked up and cried over. I pulled it out of a box in the garage for this study. My brokenness is different today. I’m bleeding from a wound I didn’t even know was there. In this starting over life of more well, and I have been much more well, a strange desire is eeking out. These people don’t know how busted I am. They don’t know I’ve lost everything. They don’t know… I’ve said it over and over. I want the story to be something new. If I put on pretty shoes and some lipstick and smile while saying how good God is all the time maybe I won’t have to be known for my suffering.

Sitting there crying in front of all those beautiful women I heard Ann’s voice,

“I hadn’t known that full cruciformity looked like this. To give someone your broken heart means breaking pride, breaking lies, breaking fear. There’s no communion unless someone breaks their ego. All along, had I only been scratching the surface of what it meant to be broken and given? How had I not lived like the brokenness itself is a gift?

Why not embrace the life work of embracing suffering, embracing brokenness? Why avoid the gift of more God, more vulnerability, more intimacy, more communion–the gifts brokenheartedness offers? Why had I found that terrifying to incarnate? Suffering is a call for presence; it’s a call for us to be present–not only to the brokenness in the world, but to the brokenness in our own soul, and to risk trusting others with our wounds. I think that is what’s terrified me–trusting others with my wounds…”

For ten years I blogged with open wounds. I bled right here on the screen, and you met me, sat in my brokenness and loved me like Jesus. My gifts in the gauntlet were more God, more vulnerability, more intimacy and more communion. I never felt alone. And then I stopped. In my pride I wanted to move the trajectory of my story to something new.

Those ladies joined hands and prayed over me. I haven’t had in the flesh prayer like that since the circling of prayer at The High Calling retreat in 2014. Everyone of them is broken too. I’ve just begun to hear their stories. The broken body of Christ. The visible invisible flesh and bone of God’s redeeming love.

“The fellowship of the broken believe that suffering is a gift He entrusts to us and He can be trusted to make this suffering into a gift.”

Gauntlet with a gift.
Always a gift.
Always grace.

I’m sitting in the dark now. I’m exhausted, but my brain is on fire, and I know rest will not come easy.

In my efforts to resurrect my book manuscript I’ve come to a clarity that changes everything.

My story only matters to the extent it is part of His story.
My brokenness. My pain. My loss. My healing. My hope.
It’s by Him, for Him, through Him or not at all.

I will crawl into bed with the hearts of all the hurting I know and love and the faces of my new family. I will pray. This is my endless and proper work. Be still, my child. Lean hard. This broken way is the only way.

“Never be afraid of broken things–because Christ can redeem anything.”

“The LORD is close to the brokenhearted and saves those who are crushed in spirit.”-Psalm 34:18

Once again the “Image of God” is on repeat. Christa Wells came to the EDS retreat in May for a private concert for the girls and their moms. I helped her make the set list, and I asked her to end with this song.

The fellowship of love is the new story.
Suffering is the footnote.
The miracle happens in the breaking.
My Hope remains.

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Feeling Forsaken. Knowing I’m Not. Moving West

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“I have called to God and heard no answer,
I have seen the thick curtain drop, and sunlight die;
My voice has echoed back, a foolish voice,
The prayer restored intact to its silly source.
I have walked in darkness, He hung in it.
In all of my mines of night, He was there first;
In whatever dead tunnel I am lost, He finds me.
My God, my God, why hast thou forsaken me?
From His perfect darkness a voice says, I have not.”–Chad Walsh

Light

Two weeks ago I sat on the North Carolina coast with the sun in my face, the clean ocean air filling my head and my heart and my bare feet grounded in the sand. I was without pain. It was the perfect and oh so rare cocktail of environment, weather and wellness gifted to me a few days during our family vacation. I didn’t take a minute for granted. I scribbled in my journal all the beautiful things that flow from the kind of hope born in pure light. Mary Oliver’s words echoed in the ebb and flow of the waves, “What is it you plan to do with your one wild and precious life?”  

This is day seven of unspeakable suffering I don’t understand.

In the fall of 2013 I had my very first lumbar peritoneal shunt placed after several years of struggling with Intracranial Hypertension. Of all my pain, the brain pressure puts me in bed, holding my head, weeping and even wanting to die. I lose vision in my right eye and hearing in my right ear. On the worst days I am completely debilitated. I knew that shunts, both lumbar and ventricle, are not engineered well and are especially problematic in EDS patients, but I was desperate. The first LP shunt clogged quickly, and I had a revision in February, 2014.  A week after surgery I flew to Arizona to heal. I arrived being pushed in a wheelchair with a large wound just under my ribs where the device was replaced and incisions in my side and back where the tubing snaked around into my spinal cord. I left having hiked over a mile the last day there. It was the most well I’d felt since 2007.

Since, I’ve had another LP shunt revision and a VP shunt placed in my brain that needed revised last April. The brutal Ohio months of January and February were always a catalyst for failure. Escaping to Tucson became a way for me to get relief. Because of planning and executing my first Option EDS – the retreat in May I didn’t plan on traveling west this year, but my tell-tale symptoms of a clogged device escalated. Delaney and I took a last minute, emergency trip in February. My relief was instant. On the flight home we both wept.

The following weeks of drastic weather changes battered my brain. I was more scared than I’ve ever been. My vascular neurosurgeon moved from Virginia to Pennsylvania since my revision last spring. I reached out, and he had me come immediately. March 22nd Dan and I drove five hours to Hershey Medical Center. I was admitted through the ER, and he revised my shunt late that night. The device and tubing were clogged. The next morning Dan asked him how long he thought this one would last. He said maybe a year at best and next time he would have to place a shunt on the left side of my brain instead of the right. It’s too much cutting.  It’s stenosis in the arteries and ventricles. It’s trauma that cannot be healed anymore.  I’ve had six shunts in four years, and there is no real fix in sight.

With thirty staples in my head I returned to Tucson with my dear friend Janet. It was another unplanned trip. I spent my time there seriously considering what I’ve known I need to do to save my life. I looked at schools for the girls. I looked at real estate. I spent the few days imagining what moving there would look like.

Several weeks later, in early May, my family and I and my parents traveled to Tucson together. The girls visited their possible schools and shadowed students that may become their friends. We looked at short and long term housing options. We spent time exploring what we’ve known we have to do to save my life. We put an application in on an apartment even though we felt the multi-family environment may be unstable for my mast cell disorder. We took a step in faith.

The day before we left I received my insurance EOB for my most recent shunt revision surgery at Hershey. The cost is shocking. $145,566.16.

We can’t afford to move. We can’t afford not to.

We flew back into Cleveland on Sunday afternoon. A pressure system was bringing rain. I literally walked off the plane to an escalating headache. I cried. I sat on the baggage carousel and cried.

We can’t afford to move.  We can’t afford not to

In all the preparation for the retreat I also began to ready our home for sale. It’s complicated because this house is in my parent’s name. It was…is a miracle, and we are deeply rooted in these literal four walls. Dan began sending his resume to job opportunities in Tucson. I wanted to ask you all to pray, but I didn’t want to distract from the important work of the retreat. Dan had a Skype interview the Monday of the retreat week. It didn’t go well. He was distraught. I was not here. He became afraid. The girls were absorbing the weight of his emotions. I was experiencing the untold beauty of a calling fulfilled. It was exhausting and exhilarating. I flew home to a storm of doubt and backtracking. The expectation of a plan to relocate so quickly was not easy for Dan. He is a man of faithful doing. He has not hustled or sold himself even once during the last ten years. He’s sacrificed any personal ambition to care for our family. I did not fully realize the kind of inadequacy he was feeling about a job search. The girls and I met and prayed. We had a family meeting and removed the “deadline” date of the beginning of school in early August. I watched my husband reappear just a little. We leaned into our family beach vacation. While sitting on the beach I wrote an email canceling our lease which was to begin June 15th.

We flew back into Cleveland in pouring rain. My head felt like it would explode. It’s been hurting since. The past week has been a testing of everything I’ve said about not cutting my brain open again. I’ve tried every possible treatment. I went to the ER Saturday and asked for IV meds which only took an edge off the constant debilitating pressure. I’ve hid in my cool, dark room and cried out to my God. I’ve been in touch with my neurosurgeon who suggests a large volume lumbar puncture to remove fluid and provide some relief and also give information about a shunt failure. I would have to travel to Pennsylvania for this. I believe I am not supposed to have another surgery.

I received an email from the realtor in Tucson last night. The community we would love to live in is releasing their first lots. There is an opportunity to build a small home with a suite where family could stay or we could host EDS warriors who need to know there is a place they could heal and feel more well. This has been a dream of mine since I began traveling to Tucson. The retreat only reinforced this desire to minister to others in such an intimate and life changing way. In my desperation I wanted to delete the email. I couldn’t even get out of bed. How in the world would we ever make it to Tucson now?

I had a Toradol injection yesterday and began a medication that has helped in the past when my shunt has failed. I am trying to write this clunky post while I can.

My life doesn’t seem wild or precious at all. The long hours curled up in the dark feel like wasted time. What are my days worth?

I spent time with a wise counselor this morning. She has walked every step of this journey with my family and I for so many years. She’s seen the medical costs that could have bought a half dozen homes. She’s seen me heal and even blossom on trips to Arizona and regress when I return. She knows my complete devotion to and admiration for the man who has loved and served my family and I through a decade of doing the faithful and sacrificial next thing. She championed the purpose that grew from my pain and became Option EDS – the retreat. She understands this particular hurt is the one kind of suffering that brings me to the utter end of myself and makes me want to disappear. She believes I am supposed to stay. Today she reminded me of what’s been possible, because we’ve been vulnerable enough to admit we could never do this on our own and then humbly ASKED. This has been no easy thing. Especially for my Dan.

You all have been invested in our story from the very first blog post on Team Danica. You’ve prayed and encouraged and supported and loved us into miracles. This is big. We are ever grateful. I cannot even begin to imagine how God will do this new thing. But I’m asking you to pray. Plead with us for a way in the wilderness. I want the story to have some kind of restoration, celebration, land of milk and honey resolution here in this life.  It may not come.  But the changing of our hearts day by day and the healing of our eyes to really see Him and know Him is preparation for the eventual total healing of my body and our souls forever and ever.  This is Grace.  Our Hope is built on nothing less.

In my crying out today I echo the voice of the one who endured the ultimate suffering for me. We share the same Father who has a perfect plan for our good and His glory.

I feel forsaken. I am not.

I believe. Help my unbelief.

“For from Him and through Him and for Him are all things. To Him be the glory forever! Amen.”–Romans 11:36

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Farther Along. Please Pray for Us

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When I leave a decided silence here I am even more reluctant to return. After all, this was a place to tell a story, and I became more weary of it than you ever could have, and I mostly quit. The narrative is in between these words. It’s in the painful place where I wrestle with my faith while my hip is screaming out of joint. I’ve been reading N.D. Wilson again.  And there’s this:

“Do not resent your place in the story. Do not imagine yourself elsewhere. Do not close your eyes and picture a world without thorns, without shadows, without hawks. Change this world. Use your body like a tool meant to be used up, discarded, and replaced. Better every life you touch. We will reach the final chapter. When we have eyes that can stare into the sun, eyes that only squint for the Shenikah, then we will see laughing children pulling cobras by their tails, and hawks and rabbits playing tag.” 

My in-laws visited this past weekend. They reminded me of a song I know because I love Josh Garrels, but I should know because I loved old bluegrass Gospel music before it was considered relevant or cool. How did I miss this poetry of God’s sovereignty?

Tonight I sit in early evening light filtered through virgin orange blossoms, and I ache. I’ve never been one to live well in the juxtaposition of the Grace I’ve been given held up to those who have never tasted or seen.

He is God.  I am not.  Oh, these lyrics.

Farther along we’ll know all about it
Farther along we’ll understand why
So cheer up my brothers, live in the sunshine
We’ll understand this, all by and by

Tempted and tried, I wondered why
The good man dies, the bad man thrives
And Jesus cries because he loves em’ both
We’re all cast-aways in need of rope
Hangin’ on by the last threads of our hope
In a house of mirrors full of smoke
Confusing illusions I’ve seen

Where did I go wrong, I sang along
To every chorus of the song
That the devil wrote
like a piper at the gate
Leading mice and men down to their fate
But some will courageously escape
The seductive voice with a heart of faith
While walkin’ the line back home

There’s much more to life than we’ve been told
It’s full of beauty that will unfold
And shine like you struck gold my wayward son
That deadweight burden weighs a ton
Go down to the river and let it run
And wash away all the things you’ve done
Forgiveness, alright

Farther along we’ll know all about it
Farther along we’ll understand why
So cheer up my brothers, live in the sunshine
We’ll understand this, all by and by

But still I get hard pressed on every side
Between the rock and a compromise
Like truth and a pack of lies fightin’ for my soul
And I’ve got no place left go
Cause I got changed by what I’ve been shown
There’s more glory than the world has known
Keeps me ramblin’ on

Skipping like a calf loosed from its stall
I’m free to love once and for all
And even when I fall I’ll get back up
For the joy that overflows my cup
Heaven filled me with more than enough
Broke down my levees and my bluffs
Let the flood wash me

And one day when the sky rolls back on us
Some rejoice and the others fuss
Cause every knee must bow and tongue confess
The Son of God is forever blessed
His is the Kingdom, and we’re the guests
So put your voice up to the test
Sing Lord, come soon

Farther along we’ll know all about it
Farther along we’ll understand why
So cheer up my brothers, live in the sunshine
We’ll understand this, all by and by

Forgive me for thinking my family and I could live this next chapter without your specific prayers. I never wanted to distract from the work God gave me in Option EDS – the retreat or the story I was telling over there. But I know better than to think my big God can only do one thing at a time with one heart and one life. I am asking you now. If you’ve ever prayed for us, please lift us up again tonight.

Dan. Monica. Delaney. Danica.

He knows. The Spirit groans. Farther along we will understand. Our Hope remains.

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Surgery Again. The Complicated and Necessary Right to Suffer

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SafetyPins
“My feelings of pain and guilt for failing not to suffer became more unbearable. The physical pain seemed almost easy in comparison.”–Lucy Grealy, Autobiography of a Face

I’m sitting at chemo today. It hurts.

My spinal cord is re-tethered. It hurts.

I want the pain and guilt of being sick to stop even more than the actual physical suffering.

There is much to share about my trip to DC. Some hard. Some pure Grace.

I need spinal surgery again. It’s scheduled for Wednesday, November 8th. It will require 3-4 days in the hospital and 7-10 days in the area after discharge before I’m released in a post op appointment. It seems as impossible now as the first time. I have to allow myself to sit here for a minute and acknowledge how this feels to me, because it’s happening to me. I won’t stay in this place. I will move forward to all the planning and logistics and finances and caring for other’s emotions surrounding it. For now I will endure this chemo and the awful ache that follows. I will crawl into bed and cry until the tears run dry. I will wrestle with God through the night. Tomorrow I will rise and begin to do what must be done. He will make a way. I will write about it. I will tell about it. He will get the glory, but today I believe He understands my complicated and necessary right to suffer.

“As a father has compassion on his children, so the Lord has compassion on those who fear Him; for He knows how we are formed, He remembers that we are dust.”–Psalm 103:13-14

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What Can I Give? An EDS Retreat is Born

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“As you move to the rhythm of the Spirit of God, what is within you that you can now give to someone else? Not for the glory of yourself, but as a person who bears the image of God in the world. What are those things in the deepest part of who you are, the personality and desires and unique blending of history and circumstances and longing–what is most alive in you as you are united with Christ that you can now pour out as an offering unto God for the benefit of others?” ~ Emily Freeman

We begin with our stories, always.

It was June, 2009. Delaney was six. Danica was twenty months old.  A few weeks before leaving for vacation our baby girl’s neck went crooked. The appointments for scans and specialists were a month out, and we decided to go ahead with our trip. Each mile seemed like a hundred as Danica cried in her car seat. The photos from our week show her wincing in pain and confusion. We didn’t yet know the words, “Chiari” or “Ehlers Danlos Syndrome.”

Over the next six grueling years we begged God to redeem that trip to Corolla. He did this through the love of dear ones who watched our struggle and wanted to make some kind of respite happen for us in a place we longed for and needed to return to. The time away in May, 2015 solidified something in all of us. We were strangely tethered to this particular geography of sand and waves and horses living wild and free in the dunes. We felt like nothing could touch us there. Wounds that were continually opened by our never ending hard scabbed over in the salt water of the Atlantic. There were no doctor’s appointments. There were no collection calls or bills arriving in the mail. I had a wellness near the sea I could never grasp back at home. We didn’t speak much about the trip before leaving. Our plans have a way of tragically falling through. Those who knew said things like, “You guys deserve this.” I would squirm. I know and love too many without even a hope of a beach vacation. I never once thought it was anything but pure grace.

The heart of this retreat began beating long before I knew I was carrying the dream. It was conceived in December, 2011 in a gorgeous home on the shores of Lake Cable in Canton, Ohio as I rested and recovered from my first Chiari brain decompression and cervical fusion. The wall of windows facing the water was a prism of healing light and heat. I spent ten weeks there. They were some of the longest and most painful days and nights of my life, but I knew the opportunity to mend in a beautiful and peaceful place was rare treasure.  I wished I could give this same experience to other women.  I imagined the empty bedrooms filled with sisters who needed to come away and rest.

Just three months following my first neurosurgery, I returned to Maryland for a tethered spinal cord release. It was the beginning of many years of serious brain, spine and abdominal operations. Danica’s diagnoses uncovered the faulty DNA I’d passed on to her and led me to understand my own life of symptoms and suffering. During this time I blogged much of Danica and I’s story. I formed relationships online with others who were sick like us. Almost all of our care was away from home and required travel. An amazing community showed up.  We met in hotel lobbies, doctor’s offices and surgical waiting rooms. We texted, messaged and called one another day or night.  We became family.

Last summer we found out Danica needed another scary brain and spine surgery. Once again someone close to us gave the hope of a trip to hold on to. We imagined ourselves sitting in the sun and surf having survived. It gave us something tangible to fight for and look forward to. In late May of this year we made it back to Corolla. The house we stayed in was not just a rental but someone’s real home. I moved through the rooms, and I thought of the girls I longed to invite to rest by the sea. Their names were circled over and over again in the “retreat” journal I’d been keeping for years. They are young women I’ve met in internet support groups, face to face waiting for appointments and scans and in hospital beds after surgery. I’ve encouraged and loved them through pen to paper, care packages and oh so much prayer. My husband Dan and I sat on the back deck watching the sun slip into the Currituck sound and talked about the dream to host zebra warriors there.

I felt the pressure and fullness of time when one is to finally say “yes” to a calling birthed from the most passionate places of joy and pain. I knew my first leap of faith would be asking for donations to put a deposit on the place the retreat would happen and committing to dates. I found a big house with an elevator and other accessible features and sent a request to the rental company about availability for May, 2018. I explored forming my own non-profit that would offer my donors tax benefits. To do this well I would need board members, an attorney, and an accountant.  I’ve always believed our family’s remaining medical debt needs to be paid before I form a foundation. As I sat in the chemo chair several weeks ago I wrote a blind email to Healing Hearts Respite Foundation, the only non profit respite house in the Outer Banks, and I asked.  I asked if we could possibly use their smaller home as a place for some of the mothers to stay the week of the retreat. I asked if their mission was broad enough to allow donations to come through them for the house rental and other retreat expenses. I asked if I could know them and learn from them.
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Exceeding, abundant above all I could have asked was the answer. The founding director of Healing Hearts let me know they had a much larger home available in the same community as their respite house, and they would like to offer it for the retreat. We had several phone conversations that grew our excitement for the possibilities this retreat holds. I chose a date. I bought the URL for this website and created this place. 

Option EDS (the retreat) was born. 
Not to us, but to His name be glory.  

This post was written for “The Heart” of the retreat website several weeks ago. I’ve wanted to move slowly and prayerfully as I shared with trusted friends and family. There has been a whispered lie telling me I need to have my “problems” cleaned up before I can live my way into this purpose. Since bearing my soul earlier this week God has showed up in texts, emails, phone calls, the mailbox and on my porch. He’s reminded me the most beautiful gifts come through our utter dependence on Him. It is not in spite of but because of my painful providence He has called me to this work.

Please join me in praying for this seed of a dream. Link over to the site. Follow us on social media. Stay tuned to the beautiful stories of the people behind this first retreat.  I have much more to tell you about our host partner, Healing Hearts, and how you can help.

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