In the spring of 2010 my Danica Jean's first Chiari decompression was failing. Her sweet little head was falling off. She was in paralyzing pain. She was barely two and a half years old. I began writing about our story on Team Danica. There was some kind of search engine keyword stuff happening and Pam Fenner found us. She was the first hero helping untie the impossible knots of our hard.
In October, 2016, Danica was having another dangerous brain and spine surgery at Johns Hopkins in Baltimore, Maryland. Pam was having her own complicated surgery at Georgetown. Danica's lung collapsed from the painful breathing where they'd planed her two ribs for bone fusion material. Just five weeks earlier I'd had another cervical fusion. I was desperate and suffering. I was afraid. I was alone. I wouldn't leave Danica's side. Pam was released and instead of having her dear husband drive her home to Richmond she asked him to drive her the opposite direction to find us. She showed up.
Pam wrote the following about her family and their journey and what this retreat week means to them. There is no one more deserving than Steve, Pam, Roman and Eden. Take a moment to get to know them and be inspired.
There is an incredible overwhelming feeling that consumes me each and every time I am asked to share our story. Where do I start and where do I end? The question enters my mind if others would even believe the story because it sounds made up. Things are awful enough when one member of a family lives with a chronic medical condition (enduring surgery after surgery), but what does life become when it is three of you? There is no end in sight when three of you are affected by Ehlers Danlos Syndrome and its related conditions. The heartache goes on and on, as EDS rears its head at just about every corner. EDS involves a lifetime of digging deep and grabbing onto something much bigger inside of you. It’s having gratitude for waking up another day. It’s living in each moment because you’ve learned how precious life truly is. It’s knowing all too well that even though you just had a risky life saving surgery, that the next thing is waiting to take you down again, and perhaps even worse this time. Your life becomes all about weighing risks and life as you knew it no longer exists. You quickly gain a rolodex of specialists and are thrown into the ring of a medical circus, that requires arming yourself with knowledge, while researching to the ends of the earth, just to stay alive. It’s like owning a car that is a lemon, constantly taking it into the shop for repairs. Surgeries become ”bandaids,” as there is no cure for what you were born with (faulty collagen that makes up the entire body, every organ system, and your blood vessels). Even worse, you unknowingly passed EDS and its related conditions onto your two children, as you didn’t know you had it because you weren’t affected until midlife. There is no handbook that you can peruse that will help you figure out how to play the cards that you’ve been dealt and you are constantly in a state of attempting to have your failing body put back together.
Chiari, Intracranial Hypertension, Tethered Spinal Cord, Spine Instability, skulls that are bobble heads that have needed to be attached to our necks, heart valve problems, vascular malformations in the lungs that wreak havoc, and life threatening adrenal insufficiency, are the conditions in addition to Ehlers Danlos Syndrome, that we live with daily. All of these things are a mouthful and way too much to get into, but nevertheless, have caused the need for a lot of neurosurgeries in the three of us. Many of which have had to be repeated. Having these surgeries once is bad enough, but having to repeat them is like living a bad dream. We have scars all over our bodies from the surgeries that have kept us alive.
Eden presented as a one year old who had great difficulty with balance/being upright and with walking. I was going downhill fast with my own extreme problems at the exact same time while trying to get Eden the help that she needed. Eden eventually had a four hour sedated brain and full spine MRI, which would wind up being a huge part of the answer to what all three of us were suffering from. She had two neurosurgeries as a toddler. Around that time, I had my first. We had no indication back then of what was to come and that neurosurgeries would become as commonplace in our house as going to the dentist to have our teeth cleaned. EDS took over Roman’s life his sophomore year of high school. The
bottom fell out and he wound up having ten surgeries before graduation.
I always say that EDS (and its related conditions) is both a blessing and a curse. The curse part is obvious. The blessing…my kids know the meaning of life at 13 and 18 years old. They know what it’s like to suffer from an invisible illness and that what you see on the outside is often not a good indicator of
what could be going on in someone’s life. They know that a smile can hide pain and how important it is to be kind and understanding for that exact reason. Eden started drawing at a very young age to escape her pain and the stress of surgeries in her life. She developed into an incredible artist over the years because of her pain, and has a true, unique gift. Roman feels like God has used his greatest pain and worst circumstances to help others. He is on a pre-med track in college, in hopes of becoming a doctor who understands and can help EDS patients. Over a year ago, I was asked to join the Board of Directors of a foundation that continues to raise awareness for these conditions, while raising funds for research, to ultimately find a cure. Every bump in the road has led to something bigger and better. We have seen the hand of God in just about everything. We have witnessed miracles. We have learned to see with "eyes of faith instead of eyes of fear.” Our journey might not be an easy one, but we are infinitely more equipped to be positive forces in this world because of our story.
Having the opportunity to embark on Option EDS – the retreat, is an unimaginable gift! It’s very difficult for us to get away and enjoy time together, since one of us is more often than not, undergoing or recovering from a neurosurgery or procedure. There aren’t many times when we have an opportunity to sit back for a week and only focus on living life to its fullest. It’s a crazy life, but we have been blessed to meet several other EDS families along the way. We have created strong bonds with many of them and have come to rely on each other in so many ways. We always imagine how wonderful it would be if we could spend quality time together outside of hospital walls. Instead, we persevere through the unthinkable and “vacation” in hospitals together, showing up for each other time and time again on the darkest days. The opportunity to embark on a relaxing EDS retreat is something that I still have not been able to really wrap my brain around. It is a huge blessing to sit, cry and laugh with people who understand exactly what it is like to walk in your shoes. Sometimes no words need to be exchanged. To spend a week with other EDS families, will be therapeutic on so many levels. Naturally, most people’s hearts go out to the patients and it’s easy to forget about the husbands/fathers whose lives are crashing down around them, watching their families suffer while they attempt to hold it together, continuing to work, hold down the fort, take care of the pets and house, pay the bills, and often for all of those exact reasons cannot be at their loved one’s bedside. They suffer, just like the patients, but in different ways that most don’t even think about. I am especially excited for these men to attend Option EDS - the retreat.
My dear friend Monica, founder of Option EDS- the retreat, and her family, continue to brave all of the hardships that EDS impresses upon them. Monica and I became quick friends when I stumbled across her blog years ago. We had so much in common. Monica has encouraged us, supported us, prayed for us, visited us in the hospital, mailed so many cards and care packages to us, and has been a gift from God to us on this journey. She is an angel in my life and has shared with me her dream over the years of creating an EDS retreat. To see this dream come to fruition and for my family to actually be invited to be a part of it, is a great reminder of something that Monica has said to me for years…"
It's another story for another time. The empty space here in 'ramblings' is almost a year of big personal life challenges and changes. I had three shunt surgeries following last year's retreat, and God made the way for my family and I to move to Tucson, Arizona last August.
I've seen miracles.
This desert life has made me more well in so many ways, and it's stoked the fires of my dream to build a non-profit here and run a full time respite house for my EDS warriors. This is hard work with many steps. In the meantime I'm being called to continue Option EDS - the retreat in Corolla.
The retreat will look different this year. Four families are invited as well as a very special women who is an angel to our community. Out of the seventeen people there are seven children and three mamas with EDS. I am going to be sharing the stories of these families over the next few days.
If you are reading this and you or someone you love lives with EDS and the many comorbid conditions it brings know I wish I could invite every one of you. I want to open the door wide and give a place to exhale in all the hard. I believe this bigger place will happen. I believe there will be more rooms and more funds and bigger community. Sign up for updates here and hold on.
Many of you gave and supported the first Option EDS - the retreat in Corolla, NC last May. Your kindness made all the difference. I NEED YOUR HELP AGAIN. The beautiful beach retreat home, Sandy Toes & Salty Kisses, is once again donated by Healing Hearts Respite Foundation. We are hosting four EDS families the week of May 25th-June 1st.
Please consider donating to help us:
-Give the couples each a date night at The Blue Point
-Give the families a grocery stipend to help with food costs for the week
-Give the group a memorable low country boil as a fun community dinner the last night of the retreat
-Rent beach chairs and umbrellas for comfortable days by the ocean
-Provide other general household needs like paper products, detergent and bottled water
You can easily donate through this link to Healing Hearts secure donation page. All donations are tax deductible.
We are expecting miracles!