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What Can I Give? An EDS Retreat is Born



“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.

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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Learning and Healing in Relationship


“Healing is impossible in loneliness; it is the opposite of loneliness. Conviviality is healing. To be healed we must come with all the other creatures to the feast of Creation.” –Wendell Berry

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One of the most remarkable and constant threads in our family’s walk through suffering is the amount of love and support we have received from others. This began with just a few local friends. It bloomed and grew to span all the way across the United States and the world. We have been wrapped in a network of love much larger than our geographical location could provide because of the power of story and the internet.

Early in our journey we had a home bound and wheelchair bound child with a year ahead of us in restrictive healing. I was a very sick mom in and out of the operating room with a very long road of surgeries and treatments ahead of me. Church was impossible. Book club was impossible. Participation in the charity groups who had loved us was impossible. I received countless cards and letters and emails but very few phone calls or actual visits. People naturally felt uncomfortable talking about their next planned vacation, big home improvement project, new shoes or even silly little gossip around a family that was literally just trying to survive the day. I understood this. Over time it caused an aching desire to participate in real face to face relationships and not just those behind a keyboard and screen.

We need community. This same girl who has always in some way loved being alone was drawn into this scary place of sharing in the blogosphere. It connected my family and me with people near and far we never would have known without technology. It brought many of the prayers and much of the provision we desperately needed. In all the good growing from the blog the lack of meeting and knowing face to face brought a hollow understanding of how God intended us to see our ultimate need for Him. In the flesh is where the work and the reward of relationships are really cultivated. Tim Keller wrote in his book King’s Cross: The Story of the World in the Life of Jesus, “If this world was made by a triune God, relationships of love are what life is really all about.” The Father, Son and Holy Spirit are a continual reminder we are not soul freelancers. We need corporate worship. We need to physically be with the Body. We need to understand our brokenness is shared in some way by the whole.

In November I attended The High Calling retreat in the Texas hill country. It was a stretch for me in every possible way to join a group of people for an entire weekend in this intimate setting. I’d been begging God to restore some kind of community in my life. This was my answer. Everything God had given me, shown me and blessed me with needed the breath of life that could only come from opening my heart and being with people again. It was in this place my story began to take its’ final shape and became ready to be told beginning to end. I needed to come together with others to make my healing viable. I needed to taste the fruit that only comes by taking the risk of letting people into my life through the door of my heart to remind me how to do fellowship, friendship and love.

I am fumbling through this new found realization. As I have periods of being more well I need to relearn life from others. I need real relationship. I promise you I will be the strange lady who bursts into tears at the most inopportune times. I will not be good at small talk for a while. You will be surprised how quickly I want to talk about heart matters and soul issues. You will need to remind me to not be so serious. You may have to ask me to quit talking about the minutiae of neurosurgery and science of autoimmune illness. You will need to share your joys with me, because I DO care about your beach trip or your new countertop. I really do. I want to hear about the conversation you had with your kids in the car or your latest and greatest crockpot recipe. It will take some time and some effort, but I need you to heal.

It is authentic knowing and being known that points to the life sustaining relationship I have been given by Grace with Jesus Christ. Real bones and real flesh given in sacrifice for me encourage me to live and love more like He did in relationship. I need to finally get comfortable wearing the sign that calls me out as the poor and the brokenhearted. I need to surrender in the most uncomfortable places where I believe He does His greatest healing. Adele Calhoun sums it up beautifully in her chapter on community in her Spiritual Disciplines Handbook: Practices That Transform Us:

My life has been shaped by men and women who loved me and handed me something of God in their very human lives. Their spiritual practices were woven into the fabric of their lives on the loom of relationships–both with God and with me. They had no halos. They told me the truth about the good, the bad and the ugly while passing on the lore of the spiritual disciplines they had traversed. I believe this is the way spiritual disciplines are to be learned. We are to learn them in relationships.

Has technology slowly siphoned your participation in face to face relationships? Do you use the availability of media for worship and teaching as a replacement of gathering together with a community of believers on a regular basis? What is one way you could tangibly reach out and touch someone today?

Photography by Cindee Snider Re. Used with permission.

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Whiter Than Snow


“Wash me and I will be whiter than snow.”–Psalm 51:7

Snow free

I woke to a fresh covering of snow this morning. The ugliness of dead, rotting leaves and plants are camouflaged by thousands of intricate crystals knit together as a huge white blanket over the landscape.

My mind recalls the Scripture I’ve known since I was a child comparing snow to the forgiveness of God.

“‘Come now, Let us reason together,’ says the Lord, ‘Though your sins are like scarlet, They shall be white as snow; Though they are red like crimson, They shall be as wool.'”–Psalm 57:1

This snow will melt. The unsightly winter will be bare again, but in Christ’s blood my sins are not just covered for a day or two or even a season. They are completely wiped away. No past sin will be dredged up and no future sin will melt away the forgiveness offered by His sacrifice for me. IT IS FINISHED. His work is done. My salvation is secure.

I am like a child SET FREE on a snow day. I find peace and rest in the wonder of a salvation I had no ability to seek or find on my own.

It is Gift.
It is GRACE.
It is my scarlet made white.
It is my liberation.

I’m quietly writing over here today about my Rahab story.
The shackles are gone.
I am free.
My God, my Savior rescued me.

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