“‘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 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
you had hit
every layer possible,
that you had found
the far limit
of your sorrow,
of your grief.
Now the world falls
from beneath your feet
all over again,
as if the wound
for the first time,
only now with
an ache you recognize
Here is the time
your own, to yourself—
as you fall
as you land hard
in this layer
that lies deeper than
you ever imagined
you could go.
Think of it as
a secret room—
that has opened
that has opened
though it may look
sharp in every corner
no matter where
Think of it as
a hidden chamber
in your heart
where you can stay
as long as you need,
where you will
you never wanted
but on which
your life will now
I want to tell you
there is treasure
that the sharp lines
that so match your scars
that this space
that feels so foreign
will become for you
So let yourself fall.
It will not be
the last time,
but do not let this be
cause for fear.
These are the rooms
around which your
new home will grow—
the home of your heart,
the home of your life
that welcomes you
with such completeness,
opening itself to you,
no part of you
It was a September afternoon like most others during that season of my life. I’d worked from home all day on database lists ordered from non-profit and political clients through my employer outside Washington DC while caring for my not quite yet 2 year old Danica. A little after 2 pm I would wake her from her one hour afternoon nap, and we would drive to Holy Cross, a Lutheran church about fifteen minutes from our rented house on 35th St. We would wait in the parking lot for the bus from Lake Center Christian School to drop Delaney. She was in 2nd grade. My habit was to arrive a few minutes early. Danica would have a bottle in her car seat, and I would stare at the church steeple, breathe deeply and pray. The spiritual discipline of “hard stops” had saved me over and over. On that particular afternoon my heart was blocked with a sadness and a fear I couldn’t name. We returned home from the bus, and I put a pot of water on the stove for macaroni and cheese. I turned the TV on for the girls to watch a show while I checked in with work to run another list order. I was standing in the little kitchen with the indian summer sun warming my face through the window when the phone rang.
We knew something was wrong with Danica since her neck went crooked in May. They called it ‘acquired torticollis’. I’d managed my telecommuting job and driving her back and forth to Akron Children’s Hospital several times a week for appointments and therapy. Her pain and disability seemed to be getting worse. Finally a physiatrist ordered an MRI under sedation. This was the first time I heard the words “Chiari malformation.” They meant nothing. The doctor kept talking, Hannah Montana was saying “Sweet Niblets” and Delaney laughed out loud as I ran to my laptop and googled the words. I began to weep. The pot of water boiled over onto the stove and floor.
Two weeks ago Delaney saw a neurosurgeon at Phoenix Children’s Hospital. We heard those words for the third time. “Chiari malformation.” Danica. Myself. Now Laney. This time these words meant everything.
Brain stem compression.
Complicated family history.
The doctor kept talking, but I quickly sunk beneath his words.
Since Delaney’s appointment I’ve been in crisis management mode. The fight for access to the many additional imaging orders needed and other specialist consults is all consuming. And it all feels much more urgent because my girl is a senior in high school with very specific plans for college in August. She has always been the one with wings so ready to fly. Except now she struggles to hold her head up.
I’ve moved through the past two weeks in a dense cloud of physical exhaustion, my own very real pain and what I now recognize as grief. But it’s a sadness and loss I’ve never known before. It’s not an opening of an old wound but something new altogether. After all we’ve been through this impossibly hard thing with my Laney has buried me alive.
God is meeting me in this dark place.
I believe there is generous enough grace to hold me there as long as I need to stay.
I believe there is strong enough grace to rescue me when every bit of oxygen is gone, and I must rise.
We will need kindness and shelter to make it through this next storm. I’m so grateful you are here. Thank you for praying for us. Thank you for staying.
“For the righteous will not be moved. He is not afraid of bad news. His heart is firm, trusting in the Lord. His heart is steady. He will not be afraid.”-Psalm 112:6-8
“Miracles don’t always make faith. Tangible proofs don’t guarantee trust. Suffering, loss, difficulty, questions, wrestling and the oceanic grace and unflinching presence of God do. And, perhaps, the fact that grace and nearness show up in those kinds of places is, in spite of us, the real miracle. Then as St. Augustine said, ‘If we but turn to God, that itself is a gift of God.'”-Michele Cushatt, Relentless: The Unshakeable Presence of A God Who Never Leaves
I read somewhere recently the age of seventeen is a critical stage in a person’s development. It’s the time when a child begins to tell their unique narrative differently than their parent’s might. We craft our kid’s stories for them much of their childhood. At some point they claim what is fundamentally true and retell the rest.
I hear my voice saying it hundreds of time over the past ten years. After learning of Danica’s diagnosis and my own people would always ask, “What about your older daughter?” I always answered, “Delaney is the healthy one. She got her dad’s genes.”
I got Delaney’s story wrong.
I look back now and see clearly when her symptoms began. About two years ago she started complaining of little things. Her perfect vision drastically changed. She would talk about pressure during big weather events. The base of her skull hurt. She would mention vertigo. She felt like blacking out when she changed positions. She was either burning up or freezing cold. During the early months of these sporadic issues I was having four shunt surgeries at Hershey Medical Center in Pennsylvania. I was planning the first Option EDS retreat, and we were praying about moving to Tucson. I wasn’t ignoring her. But I did explain some of the things away or asked her to keep track of how often she felt them and how severe they were. Our family lived focusing on the biggest fire burning at any given time so her little blaze grew just out of sight.
Once we settled in Tucson and her symptoms increased I took Delaney to a general practitioner and we received referrals to a cardiologist and geneticist. In July she was diagnosed with Dysautonomia and POTS, Postural Orthostatic Tachycardia Syndrome, and began a cardiac and an adrenal medication. The wait to see the geneticist was seven months.
Delaney’s symptoms escalated in the past sixty days. She would wake up and feel like she couldn’t make it to school. She would push through but come home and collapse in bed. She asked to wear my Aspen collar to support her head and neck. In certain positions her face would begin to tremble and go numb. There was a growing, painful soft spot in the back of her skull. I’d never felt anything like it, and I couldn’t find any medical literature describing it.
Her genetics appointment was last Thursday. We went knowing she would be clinically evaluated for Ehlers Danlos Syndrome and would also do some specific gene testing which takes about a month to get back. The geneticist felt the skull opening during her exam and was visibly alarmed. The appointment changed into a rush to have X-rays and blood work and urgent orders for an upright brain and cervical spine MRI. We drove the two hours to Phoenix on Monday for imaging. I didn’t bring up the scans until Tuesday night. Dear God. I couldn’t breathe. There is a visible opening to her brain in the back of her skull illustrated by the strange sketches of black and white on the screen.
Because the MRIs were ordered by a geneticist we technically had no one to consult about the results. Wednesday morning I sent a text to Danica’s Johns Hopkins neurosurgeon with a screen shot from the scan. He called me immediately. Before moving to Hopkins he was at Barrows Neurological Institute in Phoenix. I prayed he would have a suggestion of someone to see at least initially here in Arizona. Delaney has an appointment with a neurosurgeon at Phoenix Children’s Tuesday afternoon.
I cannot write about the multitude of emotions each of us are facing. I don’t have the luxury of laying those out right now. My fierce mother instinct and all my neurosurgical knowledge and experience has been preparing me for something I never imagined I would have to do. My fight or flight over the past week has depleted every bit of cortisol. I sat in the Target parking lot yesterday afternoon and sobbed. I texted Dan. “I’m so tired. Exhausted. Emotional. I feel like I can’t safely drive home.” The very real need to physically do each next thing trumps the feelings.
This is the update. Oh how we need your prayers. Much like when I blogged through Danica’s journey I will plan to update here so please subscribe if you would like to follow. It’s difficult to return texts, voicemails and emails. That doesn’t mean they don’t mean so very much. This is a lonely road. Our tangible needs are very real. I will also share those here when we get our bearings. We will need your help.
Please pray for Delaney. It’s her final semester of high school. She is registered at Arizona State University Herberger Institute of Design and the Arts to study Interior Design in the fall. She’s been working on the Tucson Museum of Art’s Teen Council. She’s in an achingly beautiful part of her life where almost everything seems possible and suddenly so much harder. Our narrative for her has always been one of God writing all her days. She’s seen lament and praise, suffering and joy, and need and plenty in a thousand ways. But what does she believe when road testing all these things for herself?
We talked about miracles this week. Someone well meaning already threw the word out there in a faith context that made me cringe. We’ve seen miracles. We expect miracles. But not in the waking up and the skull is perfectly healed kind of way. Not because we don’t think God is able, but because we know this is not the way faith works.
I’ve been reading through Michele Cushatt’s ‘Relentless’ for the second time. In a chapter about God being with us in our doubt she writes:
“Perhaps it’s time to revisit the miracles and evidences we’ve already seen. He has doggedly pursued us in spite of our every attempt to push Him out. His presence is big enough to enter into dark places, confusing places, ugly and beyond-understanding places and, by the sheer magnitude of his mystery, shine a light far too bright to be eclipsed by our doubt.
If I dare trust Him even here, doubt turns out to be a gift. A strange, hard gift, to be sure. But the means of a deeper faith. And if faith grows in a darkness with every sinister attempt to ruin it, then perhaps that is the real miracle after all.”
I’ve found Laney leaning into God this week. She’s turned up the music that speaks truth. She’s practicing the spiritual disciplines that often lead us out of the dark of doubt into the light of faith. This is her story. I asked her what song is meaning the most to her right now and she shared this. I’d never heard it before, and it’s left me with my eyes pointed to Christ. How can I thank Him? For even this? Because it’s ALL GRACE.
“Attention is the rarest and purest form of generosity.”-Simone Weil
It’s the quote I’ve been scratching on each new thank you note I’ve written since my latest brain shunt surgery not even three weeks ago.
I’m sitting on the back patio watching the desert sun sink westward through a hedge of sagebrush, a lime tree laden with bright green citrus and a large prickly pear. It’s mid November, and I am just now feeling the coolness of a fall night whisper against my bare skin. I will need a hoodie soon. It’s day 442 in Tucson, and I still catch my breath at the wonder of it all. I’d finally deleted North Canton, Ohio from the weather app on my phone, but I remember how quickly autumn turns to winter there. This morning a friend sent me a text saying it was in the fifties but will be snowing tonight and the low temperature in the teens. The blood in my heart froze, a kind of PTSD remembering how a pressure change like that could level me for days and how every year I wondered how I would hold on until I could fly away like a bird to this sun setting behind these mountains.
Even in this peace there is a cacophony of sounds begging me to listen. A coyote howling on the Catalina side of Oracle road. A family of quail making their way home for the night. A dog barking in the cul de sac across the big wash. A neighbor in the front whistling as he puts out the trash. Road noise as people make their way home from work. My faithful husband washing dishes just inside the screen door. And the softer sound the wind makes in the low lying plants and trees.
Each one begs attention.
My phone, often plugged in beside my bed on silent, is beside me now. My sister hit a deer this afternoon. I’m waiting to hear from her. A friend is very ill. I’m waiting for any kind of update. There is an inbox of emails full of mostly junk and some things I will need to address. I really should check before bed in case there’s something school related for the girls I need to know. There are Instagram and facebook apps on my homescreen. I’ve not checked them for hours, and I didn’t post today. They are the loudest, right? Shouting the never ending cry, “Pay attention to me.”
There’s the news. I try to avoid it. But it’s Veterans Day, and I should watch. I hope for a story of courage and kindness tonight. Monday night football begins early here. My Dan has so few things that relax him a little and bring him joy. It will be a good game. I should sit next to him and snuggle for awhile. He needs his wife’s attention. Danica is learning to crochet. She’s been out to ask me if I can help her order yarn and a different size hook on Amazon with birthday money. She needs my attention. Laney is in her room working on homework and art. She painted her Hydroflask brilliantly and now she has requests from her friends. Next November her room will be empty. I will not be able to knock on her door and lie on her bed for a few minutes just to talk. I will text her or call her or direct message her and hope she has a moment in her new college life to pay me a little attention.
Every day, every moment of the day, we are distracted, moving on quickly, our neuro pathways branching off in a hundred different ways. We watch short video clips, scroll ads, click to buy, forward a gif…QUICKLY, you have three seconds. If I’m not entertained or intrigued or appalled you’ve lost me. It’s why most of my brilliant writer friends quit blogging. The story never gets a true arc anymore. You’ve got to have a good picture and a staccato of words with an instant take away. Grab me. Give me something I can use NOW or I’ve got to scroll on. Maybe it’s why I’ve quit writing here too. What’s my word count now? No one will probably even make it this far in.
It’s almost dark. The birds are getting noisier. More coyotes have joined the chorus. The stars will be clear and bright soon. In Ohio the clouds are pressing down, but I will see Orion’s belt before I sleep.
Thank you friends.
Thank you for not looking away.
Thank you for praying.
Thank you for giving.
Thank you for giving again.
Thank you for sharing our story with someone new who met a different need.
Thank you for receiving from us knowing it’s a ripple of someone else’s love.
Thank you for trusting us to sit in your own fires.
Thank you for inviting us even when we can rarely show up.
Thank you for showing up because we can’t come to you.
Thank you for paying attention to the suffering and the dazzling Shekinah glory in our wounds.
This paying attention is rare and pure, and we are saved by it.
We will never stop thanking you.
I am healing slowly. The past few days I’ve not kept any food in my tummy. My stitches on my head and neck are raw. I’m not sleeping well or at all. But I’m so alive. I don’t have a headache. I’m born again like each time before when I was saved from the crushing pain. And you are part of this story over a decade old.
I read Shannan Martin’s ‘The Ministry of Ordinary Places’ for the fifth time this weekend. I pulled it out to find a marked quote for the book I’m writing about giving and receiving and all the kinds of currency we’ve lived and been loved by…more gift and less gauntlet. Once again I couldn’t put her story away. At the end of chapter seventeen, titled ‘The Discipleship of Sticking Around’, she writes:
Just as Jesus instructs us through parables, we lead by our stories. I want the search party story. The lighthouse story. The living-at-the-end-of-myself story, where I link arms with the ones I love, and we stand together, one foot jammed against the cross, the other on the cold, stone floor of the empty tomb. I want a story of beating heart interdependence with the saints around me, sharpening each other as we walk together through life, every day a bit closer to the heart of our Father.
I want to stay stuck in the story of God, shaping my last splinter of hope into a sturdy lifeboat, a bridge worn smooth by His goodness, a faith that’s warp proof.
This is long haul discipleship.
This is why we stay.
“Few people outside medicine realize that what tortures doctors most is uncertainty, rather than the fact they often deal with people who are suffering or who are about to die. It is easy enough to let somebody die if one knows beyond doubt that they cannot be saved – if one is a decent doctor one will be sympathetic, but the situation is clear. This is life, and we all have to die sooner or later. It is when I do not know for certain whether I can help or not, or should help or not, that things become so difficult.”–Henry Marsh, Do No Harm: Stories of Life, Death and Brain Surgery
I have Ehlers Danlos Syndrome, a genetic connective tissue disorder that affects every fiber of my body, mind and spirit. I was misdiagnosed for thirty-five years. It wasn’t until my two year old daughter exhibited extreme symptoms, and I fought for her like I never had for myself, that I found answers for my own suffering. After her first Chiari decompression failed and her little cervical spine became more unstable I set out to find the best care possible.
It was world renowned neurosurgeon Ben Carson’s book, Take the Risk: Learning to Identify, Choose and Live with Acceptable Risk that guided me in those adrenaline filled months of searching for any kind of help and hope for Danica. The entire book addresses medical, spiritual and practical life situations, but it was these four questions he always asks himself when facing an important surgical decision that helped me most:
1. What’s the BEST thing that can happen if we do operate?
2. What’s the WORST thing that can happen if we do operate?
3. What’s the BEST thing that can happen if we don’t operate?
4. What’s the WORST thing that can happen if we don’t operate?
Danica’s case was complex, and she was not even three years old. All the neurosurgeons we consulted with agreed she needed another decompression and that she needed fusion but only one team of doctors, a neurosurgeon and a brilliant orthopedic surgeon, were willing to actually TAKE THE RISK to give Danica the best chance at some kind of childhood. This risk saved her life.
There was a period of several months between a commitment to operate and the actual surgery when one of the surgeons took a step back, and we thought the chance for help was gone. There is an incredible amount of trust needed on both sides of these relationships. I thought he was reconsidering the odds of success in Danica’s case and us as parents. I later found out there were all kinds of things happening behind the scenes at the hospital and in his personal life that had nothing to do with us. I began to understand dedicated physicians are professionals making critical life or death decisions and then heading home to a family and all the important and mundane things this requires. I approached every new doctor I met with this newfound compassion and respect.
Danica’s surgery was groundbreaking. The surgeon I mentioned above created a 3-D model of her skull and fusion hardware that would grow with her tiny head and neck. Because it was a teaching hospital dozens of orthopedic and neurosurgery residents learned from her case directly and through the resulting medical literature. The very personal risk we took and the professional risk the doctors and hospital took resulted in many lives being changed.
These same surgeons recognized the similarity in Danica and I. They sent us to genetics for a diagnosis that would change everything. I finally had an answer for a lifetime of my own widespread pain. Once Danica was stable enough in her recovery I began my own search for doctors who were willing to take the risk on me.
This began with a general practitioner who sat across from me while I sobbed my story, looked into my eyes and believed me. Over time the trust we built in one another became critical in my care. She stretched the boundaries of the recommended and acceptable doctor-patient relationship, because I needed this level of involvement. She fought for me in situations I simply could not advocate for myself. This commitment was not hers alone. At every point her husband and young children were sacrificing something personal as well. She ran a one doctor practice. I was a patient who needed more than a twenty minute appointment every sixty to ninety days. I needed her sometimes weekly. I needed pre and post-surgical care. I needed her to research and try and understand all my comorbid conditions. I needed referrals and coordination of care with genetics, cardiology, hematology, urology, gynecology, endocrinology, oncology, neurology and neurosurgery. I taxed her and her small staff in every possible way, but she never wavered in her support.
I’ve seen the most dedicated specialists in the United States to treat my Chiari, Cervical Instability, Tethered Spinal Cord, Tarlov Cysts, Intracranial Hypertension, Autoimmune Encephalitis, Endometriosis, Dysautonomia/POTS, Mast Cell Activation Disorder and Bleeding and Clotting Disorders. Every one of these doctors has stepped outside what could be a comfortable, career climbing and lucrative practice of medicine to treat patients like me. They are as rare as the zebra patients they care for. They listen closely, examine the entire body and try to understand the systemic result of Ehlers Danlos Syndrome.
Over the past few months one of my trusted surgeons has faced a firestorm of criticism for some of the decisions he’s made. I’m able to look at the situation from many different perspectives. I understand the position of a large hospital and peer review and the vulnerability of everyone involved. I also know for sure this one man’s willingness to TAKE THE RISK to try and try again and again to find something sustainable to bring relief for my intracranial hypertension SAVED MY LIFE. There was no one who was willing to take on EDS patients and our specific vascular neurosurgery needs. We were suffering. We were hopeless. I was so hopeless I wanted to die. He humbly sat by my bedside when something failed and would rethink the anatomy and the engineering, and he wouldn’t give up. He was the crack in the doorway shining a little light on the wasteland of pain. Would medicine ever move forward without this kind of courage?
I’ve had more than several dozen surgeries of all kinds. Every time I’m given a rundown of the possible complications and risk. I sign my name. My husband or father or sister or friend, whoever happens to be with me that day, watches me sign my name. I’m grateful for access to their specialized care. I’m grateful they are brave enough to operate on someone as high risk as I am when literally no one else will.
Two hundred and forty days ago I had my last surgery. It was my third in two months, and I was desperate. My surgeon came and proposed something new, and I was all in. Yes, I trusted him. But I also trusted the hospital to support whatever decision my doctor and I made together. I expected them to support us that day and in the weeks and months following.
Much like when Danica’s surgeon stepped back from her case for a time, I don’t pretend to know all of the personal and professional things happening behind the scenes of this particular situation. But I do know it’s not easy for anyone involved. I hold the hospital more accountable than my own surgeon, because he is human and they are a large organization with a responsibility to back him up when something gets really hard in his family or his practice. He is a pioneer, but he is not rogue. I also hold patients like myself accountable. This delicate relationship only works if we are all trusting one another.
I’m now faced with new information about the surgery I accepted then. I know I made the exact right choice for me that day. I know I’ve had the most well life possible because of that decision. I’m needing to make a new decision about the most recent shunt and placement of it in my body and the risk involved. And this is okay. My family and I are asking ourselves the same questions above that we used to decide about Danica’s surgery so long ago.
In all the confusion and the new recommendation for removal of my lumboatrial shunt I reached out to my Ohio general practitioner, and she called me on Sunday, her day off, to discuss. I emailed my counselor, and she called me and spent an unscheduled hour to talk me through it all. I texted another trusted neurosurgeon who’s been inside my body over and over again even placing several lumboperitoneal shunts early in my IH journey, and he texted me back.
One of the most critical and controversial issues in my care is the ability to access specialists when faced with emergency situations. I believe this too has saved my life. In a perfect world our doctors would receive timely information through HIPPA approved channels of communication, but this just isn’t happening. For a special group of people the rules can’t apply. The physicians need to be trusted with the discernment to give their cell phone number to someone who might never be connected through the answering service. They need to be able to send an email and check on someone post-surgery. When the majority of their patients travel from all over the United States and even the world they understand this kind of follow up is the most practical. This kind of personal medicine works. This too is a risk.
Dr. Carson writes in the aforementioned book, “Faith by definition is a risk.” I have moments and even hours where I feel peace about the new surgical decision I think God is asking me to make. Admittedly, the rest of the time I am a wreck. The most wonderful thing about the foundation I stand on through all this is I cannot be moved even when I am doubting and certainly not feeling what I should. My God is unchanging and nothing I say or do alters His care for me. I am safe. My days were written when there were none of them. Danica is safe. Delaney is safe. Dan is safe. We are resting in the shadow of the Almighty God. No one can pluck us from His hand. Carson continues to write:
“We all have the choice. But only when someone takes the risk of faith can he or she begin to experience the best consequence and the best rationale I know for belief in God. That’s the privilege of a personal relationship with the Creator of the universe, who wants to offer His wisdom and guidance to help us deal with all the other risks we face in our dangerous world.”
We are all going to die. I’m more aware of the fragility of life, because I’m faced with inherently riskier situations. But my time here will not be cut short. I won’t be taken too soon. My purpose will be fulfilled.
I have Ehlers Danlos Syndrome, a genetic connective tissue disorder that affects every fiber of my body, mind and spirit, and I’ve had access to doctors and surgeons who are courageous enough to TAKE THE RISK to give me this precious life.
I don’t take a minute for granted.
Please pray for my family and I. This is something we did not expect to be facing. Now that I’m in Tucson the difficulty of travel to the east coast doctors who treat me is much more expensive and difficult. I am not privately insured. These were both huge calculated risks we took in moving here. Over the next few days I will be making a decision, and we will need your help. Please pray for the surgeons I appreciate and care for so deeply. Please pray for the other patients making hard choices too. Thank you. Our Hope remains.
(Dan and I were able to grab sweet moments of live music in Tuscon last Wednesday and see the band Need to Breathe in concert. Much of their music is part of the soundtrack of our lives, but this song made me cry. If God is on our side who can be against us?)
“I wonder if loving and losing a place causes our hearts to fracture. Or does it enlarge our capacity for loving and making some other place well? Placemaking asks that we love a place with all of ourselves, but placemakers don’t always get to stay in the places they have made. Placemaking offers no protection from all the many forms loss can take. Am I brave enough to risk my heart again?”-Christie Purifoy, ‘Placemaker: Cultivating Places of Comfort, Beauty and Peace.’
We’ve been in Tucson 204 days. That’s 204 days without a hospital visit. Without an ER visit. Without a surgery. That’s 204 days my body has been healing instead of undergoing a new trauma. That’s 204 days I’ve been a wife and a mother to a family that truly felt I was slipping away. This is exceeding, abundant above all we could have asked or thought when God clearly made the providence and provision for us to come here. It still feels like a dream we might suddenly wake up from.
Everyone asks if things are really that much better here. Yes. So much better. There is hard. I’m just not posting about it, and I’m not writing about it, because that was the ONLY story for too long. I know this seems like a betrayal to some in my chronic illness community, because EDS and all the demons it spawns cannot be cured, especially by relocation. Those closest to me know the truth. I’ve had bad days. Stay in bed under my weighted blanket and take pain meds bad days. Monday and Tuesday were two of them. A front moved in with rain. The pressure was relentless. Perhaps the worst since we moved here. I was dizzy and nauseous. And my heart ached. I’m still keenly aware of every tube from my shunts and the whirring of fluid being pulled from my brain and spinal cord. But I didn’t feel desperate. I could see the forecast bringing warmth and sun and knew I could endure the suffering. Real hope changes everything.
We’ve had house guests and company since early February. I’ve been well enough to offer hospitality to dear friends and family. God is in the details, and I’ve loved serving and caring for others in the specific ways only having them in your home allows. Early in Dan and I’s marriage I had beautiful guest rooms. There’s something in me that thrills at the opportunity to say, “Come, rest here awhile.” Having the space to share these stunning views and new desert life has been gift. It’s also nurtured the dream I have to offer respite to other EDS warriors here. I won’t let that go. God won’t let me.
My parents were some of the guests we hosted. They were able to visit us for eleven days. It’s their second time out. They’ve fallen in love with the mountains and the sun. And they’ve missed us too. They were the ones who showed up whenever we called. Mom would stay with the girls. Dad would drop everything to drive me to Virginia or Pennsylvania for an emergency surgery. They gave us a place to live in their basement for a year and a half after Danica’s second brain surgery and fusion when I wasn’t able to lift my head and needed my own. They were willing to buy our sweet little ranch in their name and rent it but never made us feel like it was anything but our own. They know the absolute hardest part of our decision to move here was to let that home go and our greatest fear is we will never have another one.
They are retiring. They are wanting to move here. In all their love for us they have been trying to find a way to help us again. Beginning last May when they traveled here with us to explore even the possibility of moving we looked at new homes here in Oro Valley that allow two generations to live together under one roof with very separate living spaces. It seems like a great idea and a possible work around for the higher cost of housing here and Dan’s income relative to our medical debt and the reality of the cost of ongoing care. Perhaps we could make it work. This week we realized it’s just too expensive and Dan and I can’t contribute what we don’t have. It was painful and also a strange relief.
Here’s the most beautiful thing. My dad called me to talk about the dead end. What would we do? Would we stay in Arizona? Could we without the miracle help we’ve been given this year? Did we still want them to move here if we couldn’t make a housing fit work? I cried. Dan and I only ever wanted them to make the best decision FOR THEM. They’ve worked hard in education and ministry. They did not begin saving for retirement until very late. Nothing about them putting a large home loan for us both onto their plates at this stage in their lives seems right to us. Yes, dad, come. The same God who brought us here will keep us here and provide for us here.
Half of our time in this house is up. We promised we weren’t going to talk about it until March. It’s March 17th. We have 167 more days in this place. And then what? A man came to the door Tuesday night and said the mortgage wasn’t being paid by the lienholder. I broke down in tears. This house is rented under a trust for two children after their mother died in July of last year. She built it in 2005 as a healing place. I wanted to know the story of the family who lived here before us, and I’ve found out pieces and parts. It’s made me feel connected in a deeper way than I’d imagined. It’s made me let down my guard. Hang pictures. Scatter rugs. Unpack the last box. Exhale. All the while knowing there is an expiration date on this miracle. What if we don’t even have six more months? How behind are they? If this is true what does this do to our lease?
A little broken part of me frantically wonders if this is where the miracle ends. When there is no acute need are we finally on our own? Or maybe this is the most acute need we’ve ever had. Home is essential to be rooted. My heart’s cry for 2019. “Oh God, how I want a simple little place to settle in and exhale. Please God.” Home is essential to my continued healing and the hearts of my family, especially my Dan. It seems too hard. Our medical bills. My lack of access to insurance other than Medicare which limits my access to care and the need to come up with cash for continued treatments. Dan’s career. My disability. Danica’s braces, Delaney’s college visits and actual college…How can a family try for so long and come up empty?
But it’s never been empty, has it?
It’s always been Dayenu.
It’s always been enough.
More than enough.
One thing I know for sure about our God. He is always working behind the scenes preparing all the details long before He reveals the plan for deliverance. Isn’t this what the entire Old Testament teaches us? It’s always through a story we can best see how mighty to save He really is. The weaving of tragedy and heartache along with blessings and kept promises keeps us looking for the glorious Hope in the wilderness.
“The wilderness is not necessarily a desolate place. It has to own unique beauty, and that beauty is enough. It does not need us. It does not ask for our participation…The gift of the wilderness is that this is the place where we go to simply receive. This is the place we go to listen. In the wilderness, we are given the opportunity to lay down the burden of our desire to make and remake so that when some other place invites our participation and our creative efforts, we are ready to offer those things in humility.”
Our Heavenly Father longs to give us good things. He is the top broker in desert real estate and specializes in wilderness homes. He knows what we need and the deep desire of our hearts. More than anything He’s changed these hearts to trust Him with whatever He has planned. If it’s a cleft in the craggy side of the mountain we will go. If it’s a tent by the wash we will go. We know who He is. We trust His character and see His faithfulness. We believe God will make a way, even though we can’t see it now. We also believe there is no way for us to coordinate this plan for ourselves. There is freedom in this trust. Help will come. “God, please bring help. You know we give you every glory.”
We’ve had the most lovely past few days as a family. Thursday we went to bake goodies for the Ronald McDonald House. Friday I took the girls for haircuts. Dan came home to us hanging on the back patio listening to a family favorites playlist. We stayed out to see the sun set and much later. I whispered under my breath, “God I’ll never take this for granted.” Saturday we went downtown to an art show and had dinner with one another. Danica’s friend came to spend the night and they giggled and goofed off and Dan made a bonfire for S’mores. This morning was church and then Dan and I went for a long walk together. That’s a lot of life. Life I would never have if not here. I whispered as we walked quietly, “God, I’ll never take this for granted. Not ever.”
” . . . This is the story of how we reclaim the things that are lost. It’s also a story about how a home can be become sacred, and how in the process it can sanctify us as well. I can tell you these things because I have been in dark places–which is the only way any of us learns to love the light. . . Home is more than a place where we eat and sleep; it is where we learn grace, where we glimpse heaven. It is where we find or lose God, or perhaps where He finds us if we will only be still long enough to listen for Him.”-Tony Woodlief, Somewhere More Holy
Will you please pray for our family? Nothing is too hard for our God. Please pray for Dan’s work. That he will be recognized for his skills and commitment. Please pray for my sweet girls. They know the uncertainty about where we might live, and it’s hard on their hearts. Please pray for me. May I not miss a single glorious day in the place God’s given us and trust Him completely for everything we need for every good work. And I humbly ask you to pray for provision. Even so boldly as to ask for a secure long term home for us. Oh how I long to be rooted.
Thank you dear ones. You are God’s hands and hearts to us. Our Hope remains!
If all of life were sunshine,
Our face would long to gain,
And feel once more upon it
The cooling splash of rain.-Henry Jackson Vandyke
I was born in Kirkland, just outside of Seattle, WA. This fact alone is nothing special unless you consider my parents and siblings were all from Virginia. My childhood was spent playing from dawn to dusk in the city neighborhood of St. Charles, Missouri followed by my formative teen years in southern Maryland. My wife and I met in Northern Virginia where I owned my first home. Delaney was born in Rittman, Ohio and Danica was born in Rockville, Maryland five years later. “Glass half full” readers will appreciate how adventurous my life has been while “glass half empty” readers might look upon this never putting down real roots as a challenge. I tend to view the volume of liquid in my glass as what God has provided, nothing more and nothing less. But my soul aches against this simplistic truth.
Thanks to blessings beyond what words can describe, I live in Tucson now. My daughters attend a Christian school and my wife no longer suffers debilitating pressure headaches every day. Hours upon hours of mowing the yard, raking the leaves, shoveling snow or driving in inclement weather are of no concern here in the desert. I rise each morning with the light anxious to stare at the everchanging mountains as each peak slowly comes into focus while the sun travels across a pure blue sky. Desert tan ridges and valleys turn orange as the sun sets to sleep in the west. The firework finale is held each evening as the sun disappears exploding its prism of orange, pink and yellow rays of light far into the atmosphere. We step outside this borrowed home almost every night to marvel how He does it again and again. The photos we post online do not come close to conveying this experience in person. The many stars in the clear sky get brighter each hour. My soul is still searching.
I haven’t written here in a very long time, but if you read Team Danica you might remember I referenced my favorite book in the Bible as second Corinthians. Paul encourages the readers that God’s Grace is always sufficient, and His power is strengthened in weakness. My family and I’s hardships and faith struggles have been well documented by my wife. But my private weakness, something I rarely share, is in not trusting the Lord enough even after all I’ve seen Him accomplish. I feel like I have been left wandering in the desert for forty years fearing each day and what’s to come. Every morning my last words to my girls as I drop them off at school are, “BE SAFE, BE SAFE.” Energized by the Tucson climate and a true chance to be more well my wife is exploring more of her world, venturing off to the grocery store, a Bible study or the writing workshop she just began. When we sit and talk in the evening, I am always fearful she will tell me she’s twisted her neck or spine. I live just one breath away from her or Danica needing another surgery. When most men my age have achieved success in their career and may be thinking of retirement, I am still needing to update my job resume and plan for interviews. I’m faced with a feeling of shame and despair that I will never be able to fully provide for our complicated needs. When most families I know are secure in their home and saving memories, I am stressed about where we will live when our current miracle runs out. We have seven months left in this house. My soul is restless.
It’s been raining all day here in the desert on this Super Sunday. My wife has a headache though it’s a “Tucson headache” which means she can at least get out of bed, but her heart hurts where her shunt empties fluid. She is running mostly on adrenaline now. We will be driving almost two hours away for her first Arizona infusion on Wednesday. Her autoimmune encephalitis/PANDAS/PANS symptoms are worse every day. She’s gone too long between treatments. Medicare finally approved paying eighty percent of this very expensive drug. Driving far for health appointments is nothing new, but we feel the same dread every time. I plan to study the long six to eight hours during her drip for a new technical certification with hopes that I can find yet another job to support my family more adequately. Even if a new job just means being able to add primary insurance for Monica it will be better.
We read in the book of Isaiah this morning. In verse two of chapter forty-nine he says, “…in the shadow of His hand hath He hid me, and made me a polished shaft; in His quiver hath He hid me.” I feel like I have lived in the shadows most of my life. I’ve never seen them as protection or a version of grace. Only since our move here have I gained a perspective to try and understand all our hard and all your love as a kind of holding or covering and maybe even safe hiding. But I’m tired. So tired. My soul longs for rest.
Each morning I do what my father taught me. I wake up and slay dragons. I do the next thing one day at a time. I do not boast of my struggles, for when I am weak, for Christ’s sake, then I am strong. My gratitude for those who have walked with my family and I over the long years is unbounding. It is with deep appreciation that I strive forward. A wandering soul was born in the west years ago. Now when I see a shadowy cloud seemingly lost in the blue sky I will remember it can be shelter. When I feel the desert rain I will understand it is the watering of a rooting soul at peace.
“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.
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.
“By faith Abraham obeyed when he was called to go out to a place that he was to receive as an inheritance. And he went out, not knowing where he was going. By faith he went to live in the land of promise, as in a foreign land, living in tents with Isaac and Jacob, heirs with him of the same promise. For he was looking forward to the city that has foundations, whose designer and builder is God.”–Hebrews 11:8-11
Have you read Hebrews lately? I’ve always loved chapter eleven. It’s like a highlights reel of the faithful and brave from the Old Testament. There are a lot of relocation stories scattered throughout. We know there was bold trust in God, but these men and women were human. They had the same needs and desires for a secure home, close family and friends and daily provision we all do. I picture Abraham holding a family meeting to discuss the big move. There was no elaborate relocation package or move coordinator provided. Just a sure call to GO.
Everyone asks how God picked our family up in early August and carried us here so quickly. Even though we’d prayed and asked you to pray for this move west for several years it always seemed just too hard and scary. There was a life changing gift in 2017 that began to make the way. After our trip to Tucson in May we took bold leaps of faith even to the point of preparing the house to sell and renting an apartment here, but things fell apart. In late July after two of the three shunt surgeries I journaled a prayer asking God to help me let the dream go if it wasn’t His will. I questioned if my deep desire to move was motivated by me selfishly wanting to be more well at the expense of my marriage or our family’s highest good. There were people who told me I should come here alone or the girls and I should come and Dan follow if and when he found employment. They said it would be choosing life. My husband sacrificed for me over and over again, and he stayed. When almost any other man would have left. He stayed. I would stay with him too.
From the very first serious talks about moving here I knew Dan was the most afraid. As the sole provider he did not believe we should move unless he had a job here. Finding a job here while in Ohio was complicated, and we did not have the resources for him to travel back and forth for interviews that might become dead ends. Dan’s resume is not deep. He worked faithfully for over a decade at his IT job to provide the best insurance coverage possible for the complex medical needs of our family, most notably many out of network physicians and surgeons. During a time when most men would be taking opportunities to advance in management or more responsibility Dan did not. He worked hard. He worked overtime. He took the menial jobs of hardware setup and moves that no one else wanted. He worked more holidays than I can count. But he never got ahead. Along with this faithfulness came a position of humility not many men are asked to take. He was a beggar. There was no way he could fully provide as our list of surgeries grew longer and our travel took us further. He assumed the position of grateful accepter of help. It wasn’t until the miracle phone call on August 2nd that he heard the clear directive to go.
Only a few of you have been reading from the beginning…since Team Danica. After her second brain surgery and big fusion leading into my own decompression and fusion we moved into the lower level of my parent’s home. There was perhaps nothing more humbling for Dan than that. In late 2012 God made a way for us to have our own home again. It was an accessible ranch less than a mile from my parent’s house and the girl’s school. Our medical debt was truly only beginning, but it had already leveled us. My parents bought the home and rented it to us with the spirit of it being completely our own. We loved it as such. I’m crying as I write this, because I miss that house every day. A little three bedroom ranch with a cozy nest corner I thought I might die in. For a family who felt so unrooted and who was struggling for light and breath in a basement this place was a gift beyond measure. My disability being approved allowed for our payment to be faithful and on time every month. We had no retirement, no savings account and lots of agreements to pay massive debt, but we settled in on the safety of having a home. We never took it for granted.
Moving here meant leaving the one thing Dan and I felt we most needed. Our home. It was terrifying.
This is what I’ve learned.
Fear is a liar.
I’d scribbled this from Ann Voskamp into my planner:
“The greatest motivator can be fear. This will kill you. The greatest fear can be that grace won’t be enough. We won’t be enough. This fear is a fraud. Let go of the lie. All fear is executed with one line. THERE IS ENOUGH. Fear invites the impossible to happen. All fear shrivels when you serenade it with one refrain: THERE IS ABUNDANCE.“
This is my life song.
More than enough.
Perfect love that casts out fear.
God gave us a buyer for our lovely home immediately. It cost $6,731.89 to move our things even though we’d sold what seemed like most of our furniture. (It turns out books are the most expensive thing you can possibly move.) Shipping Dan’s car was $1,350. Plane tickets for our family to fly here were $1,200. My sweet old 2003 Murano with the aftermarket backup camera that gave me my little bit of freedom and independence when I thought I’d never drive again was not worth shipping and would have never made the drive here so we left her behind. We had to rent a car for several weeks so I could immediately help get my girls clothes and supplies and settled into their schools. All of this seemed impossible. It was scary. But God made a way. We moved here with Dan on FMLA and no job. The one thing Dan said he wouldn’t do…he couldn’t do, he did. There were several months we completely lost our medical coverage, the one thing we thought we could never let lapse. But we did. There was a sure call to GO.
We came here on a 365 day plan. Through what I like to call “the economy of love” God’s provided this home for a year. We have seven more months with this view. God gave me a beautiful, safe, reliable car that will last for many years. It was literally dropped off in my driveway several weeks after we arrived here. Crazy love.
Dan and the girls are insured now, but I am not. I have Medicare, and I’m finding roadblocks for access to care over and over again. I’ve already needed to fly back to Ohio for my chemo. I’m due for an infusion now. Medicare has denied payment for this expensive treatment I’ve relied on for over two years. Dan is underemployed. He needed to take something. He needed to get at least some insurance coverage. We cannot live on his salary. The girl’s amazing, loving, God’s arms around them every day school is costly. Without it we never would have moved here. It is how we chose this part of Tucson. If they aren’t okay I would never be more well.
This is what I’ve learned.
Fear is a liar.
This is my life song.
More than enough.
Perfect love that casts out fear.
The faithfulness of God has been our food and shelter and medical care. We’ve been supported by the relational redistribution of your abundance. It’s made us rich beyond measure in every way that truly matters. It’s a story you’ve helped write and one I’m only now beginning to tell.
Last week I felt the most well I can remember ever feeling. I’m fully alive for a reason. God did not bring my family and I here to live only unto one another. He is calling us out in more faith to trust Him for each next thing. He’s growing something from the investments you’ve made in us to give to others. I’m sure of it.
What is your greatest fear? Bring it out of the dark places of not enough and let God’s perfect love shine on it. Name it. Take a deep breath and risk to walk into the lie. It will lose it’s power.
“This is not despair,
not the retreat into the deep wound
but a conscious living of each day
This is the placing of one foot before the other,
not the free stride of the unencumbered
but the careful tread of the initiated foot
This is learning how to walk
without familiar landmarks, alone
even in the company of others,
not ready yet for new direction
This is the living of each day, aware
that what you cannot predict
may still loose sudden tears, yet
that laughter too is possible
This is when you struggle
as plants in arid soil
strive without conscious knowing
to stay alive until the rain
This is a time for faith
that this most naked agony of loss
will ease, and not corride the spirit
This is the time to trust that day after
labored day you will move forward,
open to joy as well as pain;
two-sided coin, you proffer for remembrance.”–Maude Meehan
I’m sitting in my new nest. I shuffle to my spot just before dawn and settle in to watch the pink glow grow over the Catalinas. Dan and I share coffee here most mornings before he leaves for work. These quiet moments together are an intentional touchpoint. It’s often the only time in a day we may sit face to face and focus on one another. He leaves, and I turn to my morning rituals of meditation, reading, journaling and prayer. To be home. To be in a kind of sustained rhythm is something I was made for. Something I longed for. I don’t take a minute for granted.
The life of chronic illness doesn’t set you up for regular soul nourishing habits. There are days you simply cannot get out of bed. Meditation is impossible unless you count focusing on the pain. Scratching down feelings often magnifies the ache. Prayer is mostly, “Please, Jesus.”
Everyone asks how I’m feeling. They want to know if I’m as well as I look in the sporadic photos I’ve shared on social media since arriving here in Tucson on August 25th. It’s a tricky question. It’s a difficult answer. I often say, “I’m healing but never healed…” Everything I experienced during my previous winter visits to Tucson has been realized. But I will always have Ehlers Danlos Syndrome. This genetic mutation is forever embedded in every part of my connective tissue. I know I am fearfully and wonderfully made.
I have significantly less pressure headaches and symptoms. This was the main reason we relocated here. My Intracranial Hypertension was unbearable. After nine various shunt surgeries we understood current shunt technology coupled with my challenging anatomy and EDS would never bring lasting relief, especially in northeast Ohio. Quite frankly I wanted to die. After surgery on July 4th and again on the 9th I was back home lying in my dark room in unspeakable pain, and I couldn’t see my way back to Hershey for a revision. I was done. I’d felt this hopelessness before, but the miracle that arrived in a text and a phone call on August 2nd gave me the courage to crawl back into the car and take the long turnpike trip back to Pennsylvania for another revision. Removing a mess of old tubing from my abdomen and rerouting the tubing to empty the cerebral spinal fluid into my heart was something I said I’d never do. I have a cardiac condition called Postural Tachycardia Syndrome (POTS). I have a Pectus Excavatum, a bone malformation of my breast bone that curves inward and pushes on my heart and lungs. I have chronic Strep infections (PANDAS/PANS) that cause heart inflammation. I have stenosis in my right ventricle because of multiple central lines placed for plasmapheresis. When my neurosurgeon came into my room and so calmly stated what he needed to do I didn’t think twice. The hope of the move gave me courage and faith. The surgery was a success.
Do I need my shunt here? Yes. I now have two working shunts. On calm and sunny days I still hear my brain shunt buzzing when I move positions, particularly from sitting to standing. On rainy days or when the pressure is changing more drastically, something that happens much less frequently here but is still a catalyst, I can feel it working overtime. I can also feel it in my heart. It cannot always keep up. I’ve a handful of days I needed to be in bed because of the pain and symptoms. If nothing else changed about my health except this one thing it would be enough.
The above poem describes the “conscious living of each day” my new home allows. It is a slow and careful movement through foreign or forgotten neuro pathways and literal paths too. The smallest thing can trigger the trauma and tears. Much of the reason I’ve been so still and quiet is to process and unpack the accumulated grief and suffering. But I am finally in a place where I can bury some of the hurt.
I catch myself laughing. Even out loud. I’ve stopped biting my cheeks. My face has relaxed from the constant furrow of pain in my brow. I walk past a mirror, and I see a woman living not just surviving. Ann Voskamp wrote, “Joy and pain, they are but two arteries of the one heart that pumps through all those who don’t numb themselves to really living.” For oh so long I was necessarily numbing myself. Now I lift my face to the sun and listen to the strong beat of a heart that knows joy and pain and can celebrate them both equally. The rise and fall of my chest is a new song of praise. I don’t want to forget. My God wants me to remember so long as I tell the story rightly and point to the healer of the heart’s eye through which He is seen and glorified.
“Come and hear, all you who fear God; let me tell you what He has done for me.”–Psalm 66:16
(For those of you specifically interested in the other areas of healing I’ve found since moving here I will slowly continue unpacking them in future posts. My heart’s desire to invite you into a respite place in Tucson is perhaps the most real calling I’ve ever had. I’ve seen miracles. Nothing is impossible with Him. Stay tuned.)