"...Until recently I barely even knew the signs of welcome, like the way a person plopped down across from me and sighed deeply while looking at me with relief: a shy look on someone’s face that gave me time to breathe and settle in. I didn’t know that wounds and scars were what we find welcoming, because they are like ours. Trappings and charm wear off, I’ve learned. The book of welcome says, Let people see you. They see that your upper arms are beautiful, soft and clean and warm, and then they will see this about their own, some of the time. It’s called having friends, choosing each other, getting found, being fished out of the rubble. It blows you away, how this wonderful event happened—me in your life, you in mine. Two parts fit together. This hadn’t occurred all that often, but now that it does, it’s the wildest experience. It could almost make a believer out of you. Of course, life will randomly go to hell every so often, too. Cold winds arrive and prick you; the rain falls down your neck; darkness comes. But now there are two of you. Holy Moly.” ― Anne Lamott, Small Victories: Spotting Improbable Moments of Grace
For what seemed like much longer than four years I journaled and prayed and waited. All the ideas swimming inside my head and my heart and the eventual planning and fundraising and executing became reality last week at the first Option EDS (the retreat).
I hoped it would be so many things, but I mostly wanted the women invited to arrive and feel welcome. We use this word often, and it loses meaning in certain contexts, but we all know what it feels like when it happens to us. Healing Hearts Respite Foundation gave us the perfect space to use, a beautiful beach house in the Outer Banks of North Carolin set on a hill with views of the ocean and the sound. In a meeting only God could orchestrate I found Kim Sproles, Founder and Director of Healing Hearts, last year through an email exchange while I was first stepping out on the waters of faith. Her "Yes!" became God's "Yes!" Last Monday night the mamas and daughters were allowed to check in after 2 pm for a day of rest and recovery after long travel. They came from as far as San Antonio and Boston. I knew what an act of hope and faith their journeys to Corolla were. They were trusting me. The first night was perhaps my favorite. Before the retreat officially began these beautiful souls entered into a home prepared perfectly for them. After finding their rooms, discovering the first of many gifts and touring the gorgeous house the girls and moms put on their bathing suits and gathered by the pool. Janet and Lori, two dear saints of hospitality, served a nutritious feast for the eyes and the body. Kim and Hope, beautiful souls from Healing Hearts, joined us for an introduction and a glimpse into what their generosity was birthing. I love Jesus' call to retreat in Matthew 11:28, "Come to me, all you who are weary and burdened, and I will give you rest." This was the Spirit gently ushering the guests in. Later in the week Christa Wells joined us for a private house concert. She sang her song "You've Got a Home." I chose it for the set list, because it is was on my retreat dreaming playlist. The generous feeling of welcome and home was central to everything else I prayed for. It's not something I can transfer from there to here. You will just have to trust me when I tell you we settled in quickly and never wanted to leave. Put your feet up and stay here awhile. I will be writing all week and sharing so many photos!
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 Hello. I am Sydney. I am the youngest of the group. Just like the other girls you've read about here I have Ehlers Danlos Syndrome along with some of the other co-conditions that can go along with EDS. I was about 11 when I started having really bad back and leg pain. For a while we couldn't pinpoint what it was. It wasn't until my mom (who has Ehlers Danlos and other co-conditions as well) was being tested for Tethered Cord Syndrome that she realized this might be the cause of my problems. So a week before my 13th birthday we met with my mom's neurosurgeon who deals with complicated EDS patients to see if this was really the cause and if this was my next path in life. He informed us that there was much more going on than we thought. I did have tethered cord but it was "hidden" meaning you could not see it on an MRI. I also had a small syrinx, scoliosis, and several levels of my spine that were unstable, but he thought the tethered cord was the most crucial at the time. However, he could not perform surgery on anyone under the age of 14. He suggested we go and find another doctor because he felt a year was just too long for me to wait. For the next year we searched for a doctor to detether my cord, but most said that I was faking or it was all in my head or my case was to complicated for them. I ended up in a wheelchair, and we went back to the my mom's neurosurgeon. Since it was only a month until I turned 14 we scheduled surgery for the week after my birthday. I thought I would bounce back, get to being a kid again and run around the yard with my sister and the dogs. I soon learned that was just not the plan for me. I had to learn how to be a kid with limitations. I went from running to falling, from walking to being in a wheelchair, then using a walker and back to walking on my own again. I was learning how to live with this new normal.
That's when the pain began to get worse. I started losing feeling in my legs again. Not knowing what was happening we went back to Maryland to see if we could figure it out. My entire spine was unstable. My neurosurgeon informed us that Maryland had changed a law and at his hospital he could not operate on anyone under the age of 18. I was only 14. He gave us a couple of referrals, but all of them said I was either too complicated or it was outside their wheelhouse. For 3 years we have found doctors who will help manage and maintain my health. We are waiting until I am 18 to finally have surgery to stabilize my spine. This has been a long and twisted journey with lots of doctors and lots of diagnoses. I know it's not over and there will be more surgeries in the future. But that's okay, because I know God put this path before me for a reason. Along the way the greatest gifts to come out of all of this hard are the friendships we've formed with others who are going through the same things and even more. I can't wait to spend a time with my friends on the beach! I have never looked forward to something so much in my life. I am very thankful for Mrs. Monica and everyone who is helping with this. retreat. |
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