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May 3
2015

How Can I Go On Like This? Abide With Me

by Monica

“What surgery meant to *Monica and what it meant to almost anyone else were two different things entirely. For *Monica, a single surgery was more like a fitting for a dress, or the rearranging of living room furniture: it was only a step towards something else. She never gave up believing that there would be a final moment, a last surgery, a point at which her “real life” would begin.” Ann Patchett, Truth and Beauty (*Lucy was Ann’s dear friend)

I need another surgery.
I am thirty-nine years old.
This will be my twentieth surgery.
This will be my seventh neurosurgery.

This IS my life.

In January I asked God to let me go just one year without a scalpel.
I made a list of 40 things I wanted to do before my 40th birthday on November 5th.
I created a beautiful vision board.
I planned out the finishing of Gauntlet With a Gift by April 30th.
I arranged Dan and I’s Tucson trip in February.
I booked a beach house in Corolla for a family vacation the last week in May.
I registered for a writing conference at Princeton in June.
I dreamed of a long July weekend in my Shenandoah Valley hometown with a childhood friend.
In August I wanted to make good on a five year broken promise to Delaney to visit NYC together.
I penciled in a Cleveland Indians game and a concert on the lawn at Blossom before summer’s end.
I booked a hotel in Columbus for my friends and I to attend the Country Living Fair in September.
In late October I intended take my girls to Fallingwater as the leaves turned.
And I wanted a birthday party. A big one.
More than anything I purposed in my heart I would not NEED you.
I would not fund raise.
I would not talk about our medical debt.
I would not blog about my day to day health struggles.
I wanted to do something new here.
I wanted to shine Hope.
I wanted to talk about healing.
I wanted to share other’s stories.
I wanted you to know all your praying, all your giving and all your caring tangibly changed something.

My trip to Maryland last week revealed the reason I cannot get through twenty-four hours without a debilitating headache. It makes a crescendo around 2 pm every single day, and I crumble.

I have all different kinds of headaches, and I am able to tell you about them in detail.

A pressure headache is the feeling my skull and brains will explode. This typically comes from weather changes. I have a lumbar shunt sewn in my abdomen that snakes around to my spinal cord. Theoretically it removes excess cerebral spinal fluid building up and empties it into by belly to be absorbed by my body but often it is not enough. This headache makes me cry. I hold my head in my hands while I curl up in a ball and beg God to make it stop.

A “brain on fire” headache comes from illness like Strep or a wicked mast cell attack from something like bleach or a lilac or your perfume. This headache makes me certifiably insane. I am mean. I am crazed. I am desperate. Praying is almost impossible.

A migraine is like an ice pick in the front of my head spreading pain all over. Any light or noise makes it worse. I am nauseous, and I often throw up. I know it will last for at least twenty-four hours but often I wake up the next day with it. This headache makes me sad.

The headaches above come and go but lately have been layered on top of a never ending, something is smashing my spinal cord, seizing from the back of my neck up my head and over the top of my skull, buzzing and numbing, I cannot live like this pain. I have not suffered this kind of headache since my brain decompression and skull to C2 fusion in November, 2011. It began in Tucson. I explained it away as travel and hiking and washing and flat ironing my hair every day. The popping and grinding of my cervical vertebrae not already fused escalated. I wake and think it is manageable but rotating my neck at all, looking up or down or lifting anything ruins me. This headache makes me cry, “How can I go on like this?”

A month or two in I knew. A scan was just the calling card for a sure thing. I wondered how much damage was being done. I worried about a syrinx forming. I flipped ahead on my calendar to see what would need to be canceled. I saw another season of my life and my family’s life swallowed up by a nightmare deja vu.

I need a fusion of C5-C7. There are two different options for this surgery, one going in the front of my neck, removing the hardware from my C3-C4 fusion I had in October because it is solid and then fusing the three vertebrae below with hardware and bone slurry. The second option is more invasive. I would be cut in the back of my neck and the C5-C7 would be fused posteriorly as well as adding extra stability with bone slurry from my C4-C5 and my C7-T1.

My surgery is scheduled at Doctor’s Community Hospital in Lanham, Maryland on Wednesday, June 24th.

Like every time before I have no idea how we will do this. There is a $5,200 deposit. There is more travel and more hotels. Dan will take off work. The girls will stay here with family. Their summer story will be held in place by the bookends of their mom suffering and trying to hold on until surgery and their mom recovering from and trying to heal after surgery.

This is their life.

I only wanted one year.

How can I go on like this?
How can they?

I’m sitting here in my “nest” chair with both great room windows open. The early evening sun and breeze move like skilled dancers in the woods behind us creating the backdrop and the lighting for a concerto of bird songs. A daddy and mommy cardinal are building their home in the orange blossom tree along side our deck. They take turns swooping in with new materials for their sweetly thatched hideaway. By the time the delicate flowers flourish their precious eggs will be be nestled safely to incubate and hatch new feathered babes. If I look long enough I can see our grass growing greener. I witness bright yellow dandelion heads morphing to puffy white seeds. If I listen closely I can hear leafy buds on our deciduous darlings opening fuller than even the moment before. The tulip tree outside my kitchen and sun room windows finally risked to bloom. The petals are a graduated palette of blush to rosy pink spun like the softest silk. It is the maid of honor to our flowering pear tree, a bride wearing the most intricate lace gown. This is our third spring in this miracle house. When you are gifted a view of seasons changing over and over again from the same looking glass you begin to let yourself feel at home. If you know our story you know my heart. I thank God every day for this place.

My dear Amy Carmichael wrote these beautiful words:

“We say, then, to anyone who is under trial, give Him time to steep the soul in His eternal truth. Go into the open air, look up into the depths of the sky, or out upon the wideness of the sea, or on the strength of the hills that is His also; or, if bound in the body, go forth in the spirit; spirit is not bound. Give Him time and, as surely as dawn follows night, there will break upon the heart a sense of certainty that cannot be shaken.”

Tonight I am asking God for certainty that cannot be shaken.
Again.
Without it how can I go on?
I will trust.
I will abide in Him.
He will abide with me.

This hymn sung by Indelible Grace has been one of my favorites since I was a child. It was written by Henry Francis Lyte in 1847 while he lay dying from tuberculosis. He survived only a further three weeks after its completion.

Apr 27
2015

What Kind Of God?

by Monica

“What comes into our minds when we think about God is the most important thing about us.”–A.W. Tozer

I didn’t want Gauntlet to be a treatise on the sovereignty of God. There are plenty of really good books, most of which I’ve read, attempting to explore the why and how of God’s control over the big and small in the universe and in our lives. I just wanted to write our story and let my own struggle with and eventual acceptance of this truth to shine through. Over the years I’ve blogged very candidly about the ways I’ve grown to not only believe but cherish the specific providence of God. People have questioned me, and I have tried as best I can to explain what my feeble mind understands about how His ways are higher than our ways and why I wouldn’t want it any other way. As I began posting other’s stories in Thursday’s Gauntlet Story Feast I’ve received emails and messages asking, “How can you have endured so much pain and loss for so long and still say it comes from the hand of a LOVING God who has planned it all from the beginning? How can you bless His name and give Him praise for even these bad things?”

One of the greatest struggles I’ve had since I was a child is reconciling theology taught to me from a young age, some very right but taught in a wrong spirit and some clearly wrong, with my own reason, the pull of humanism and all kinds of other religions that sell a different God than the Bible, and TRUTH. Yes, a dirty word, but I’ll say it. The above quote has been critical to me these past years as I have grappled with the question asked since the fall,

“What kind of God…?”

I could go straight to Job. It is perhaps the clearest picture in Scripture of the behind the scenes workings of God allowing great trial into the life of a man who was “blameless.” I cling to this narrative as if it was my own. It is hard to read, but it sums up the before and after so simply, “The Lord gives and the Lord takes away. Blessed be the name of the Lord.” (Job 1:21)

I find it more challenging to look at God’s sovereignty in places like Matthew’s gospel account of Christ’s birth. We seem to gravitate to and focus on parts of the stories that make our hearts swell with emotion. Every one loves a choir singing of peace on earth, goodwill towards men and a baby that doesn’t cry. The miracle of the birth of Christ has been read through time, embellished and romanticized, sung about in carols and celebrated by many who never really desire to understand the rest of the God who WAS the very human baby Jesus born in the manger so long ago. Mary is celebrated. Joseph was the best “baby daddy” ever. The wise men and the shepherds are heroes. Truly, there was so much more going on there that night than the nativity scene we set in our homes and altars.

I cringe when I get to the section Massacre of the Innocents in chapter 2, verses 16-18. I know it is there, but only because Herod is generally told as the bad guy in this epic, and He wanted Jesus dead in the off chance he really was going to become the literal King of the Jews. I don’t remember anyone ever preaching about these verses in an expository way or focusing on them at all. I think we always just kind’ve stop when Joseph whisks Mary and Jesus away for safe keeping in Egypt and then fast forward to Christ’s idyllic childhood in the carpenter shop once they return. Not much else is told to us until we get into the thick of His earthly ministry leading up to the greatest sacrifice, His death on the cross for our sins.

Here are the verses so you don’t have to run and look them up:

“Then Herod, when he saw that he was deceived by the wise men, was exceedingly angry; and he sent forth and put to death all the male children who were in Bethlehem and in all its districts, from two years old and under, according to the time which he had determined from the wise men. Then was fulfilled what was spoken by Jeremiah the prophet, saying: ‘A voice was heard in Ramah, lamentation, weeping, and great mourning, Rachel weeping for her children, refusing to be comforted, because they are no more.'”

What kind of God needed to allow every other baby boy to be murdered to fulfill His saving plan? If Christ’s death on the cross was such a great sacrifice then what was this? Every single family with a baby boy two and under in the region had their sons snatched from their homes and brutally killed. We start in Matthew and separate the Old Testament law from the New Testament and Grace. There are so many beautiful truths about how the saving work of Christ changed how we access God and how we are forgiven. Praise God it is finished. There is no more need for continual shedding of blood and sacrifices on man made altars. So why this great sacrifice of all these lives as soon as the Savior finally enters the world? Is it just to fulfill a prophesy? If so, why? Do I really want my God to be a God who says, “Because I said so”??? If I didn’t have the light and the grace of the New Testament would I believe in the Old Testament God? Here’s the thing. He never changed. The person and work of Christ did not change the Alpha and Omega. He was and is and is to come. He gives and He takes away. He wrote this story from beginning to end before any of it was spoken into existence. Blessed be His name.

So what comes to mind when I think of God? What kind of God needed to allow the physical pain, emotional suffering and loss and financial ruin to our family these past years? If He loves us so much that He sent His only Son to die for every single one of our sins why would He let us be hurt this way for so long? The answer is simple. God is God. His ways are higher than our ways. His purposes are always about the soul. We see in a mirror dimly what will someday be shown clearly to us face to face. We will know what is already known by Him. If we traveled back to Eden we would have bought the same lie Adam and Eve did. They wanted to be wiser than God. You ask me, “Did God plan for them to sin? Did He set in motion this entire cosmic story so He could be the Savior of the world? Do we have free will or are we nothing more than puppets?” The answer is simple. God is God. His ways are higher than our ways. His purposes are always about the soul. We see in a mirror dimly what will someday be shown clearly to us face to face. We will know what is already known by Him. Every single bit of this is more than we can comprehend. It is also more than we deserve. It is all Grace and we walk by faith.

More than six years ago, in my very first post about Danica’s Chiari diagnosis, I ended with a quote from Oswald Chambers. I committed it to memory and have returned to it a hundred times in this walk. It is the answer to the question that still nags on days like today when my pain is still oh so present and the future seems unclear. What kind of God?

“Living a life of faith means never knowing where you are being led. But it does mean loving and knowing the One who is leading. It is literally a life of faith, not of understanding and reason — a life of knowing Him who calls us to go.”

I spent the entire weekend in bed. My headaches and neck pain are steadily increasing. My neck is falling apart below my last fusion. I will fly by myself to Washington DC on Wednesday for yet another flexion and extension MRI and visit with my neurosurgeon. Yesterday I felt so much despair I returned to a place I hadn’t been in months. I wanted out. I cried. I raged. I collapsed.

This morning I woke and God took my morning worship to these words from Frederick Buechner:

It is out of the whirlwind that Job first hears God say “Who is this that darkens counsel by words without knowledge?” (Job 42:3). It is out of the absence of God that God makes Himself present, and it is not just the whirlwind that stands for His absence, not just the storm and chaos of the world that knock into a cocked hat all man’s attempts to find God in the world, but God is absent also from all Job’s words about God, and from the words of his comforters, because they are words without knowledge that obscure the issue of God by trying to define Him as present in ways and places where He is not present, to define Him as moral order, as the best answer man can give to the problem of his life. God is not an answer man can give, God says. God Himself does not give answers. He gives Himself, and into the midst of the whirlwind of His absence gives Himself.

I am asking for God to turn my heart and mind from the uncertainty and fear of what could come next and from asking the questions about how in the world could I ever really be healed and restored to just wanting to KNOW HIM MORE, listen to His call and go where He leads. It really is that simple and beautiful. He gives Himself. It is Grace. It is enough. I believe this pain will turn into joy and greater good and His glory. I trust him because He promises.

Bitter today. Painful this week. Hard this month. Sweet for eternity. Yes, please.

Photography by my dad, Gregory Scott Roberts. Used with permission.
Linking up with Jennifer Dukes Lee’s beautiful #TellHisStory post.

Apr 23
2015

Addy’s Army. Gauntlet Story Feast

by Monica

Once in awhile in our community of heroes there is a family…a child…a story so similar to your own you feel like you are sharing one heart. LeighAnne’s fight for her daughter Addy mirrors my own battle for Danica in so many ways. Addy’s surgeries, her recovery and her personality are so like my brave girl. Their family’s faith in a good God, overwhelming prayer and financial support from people near and far and their hope for the future remind me “Where there is great love, there are always miracles.” –Willa Cather

Addy’s Army
By LeighAnne Busby

Many people have asked me, “What are Chiari, EDS, and Cranio-Cervical Instability?” I give simple as possible medical definitions. I explain they are a cluster of disorders inflicting great suffering on those diagnosed. In the same breath I also share how they have been the gateway to the unfathomable love, grace, and mercy of our Creator. Before diagnosis I didn’t need God this desperately. I didn’t collapse into my Heavenly Father’s arms this completely. I didn’t fall to my knees and worship Him this fully.

When my daughter Addysen was born she seemed as “normal” as my older 4 children. I now know she is anything but ordinary. Not because of her disorders, but because of how she lives her life. Her strength and determination make me believe God prepared her for for what she would be asked to endure for His glory long before He formed her in my womb and gave her breath.

When we received her diagnosis in October, 2013 I nearly fell to the floor. Her presenting symptom was a seizure which prompted an MRI. I was told by her doctor that the Chiari Malformation we saw was not to blame. I knew in my gut this was not true. I stopped living for the next few months in order to pray and research. God guided my every move. I felt completely powerless, and I still do. It was exactly where God wanted me. He needed to move and to be able to guide my husband and I to the right people at just the right time.

We met the first surgeon in February, 2014. He looked at me and said, “You and all your children need to be scanned.” In the next few months, we discovered that EDS was a genetic factor, and I passed it down to Addy and some of my other children. For just a moment I felt utter devastation, but there was no time for a pity party. A dear friend of mine encouraged me to travel to the best expert we could find. I told her there was no way, because we could not afford it. Her response was, “Whether you decide to travel or not, do NOT ever let it be because of finances. God is bigger than that!” It was the best advice I ever got.

One of the greatest blessings through all of this has been watching God use ordinary people in extraordinary ways. A month before Addy’s first symptom appeared we left our church family due to a painful chain of events. We settled into a new church a couple of months later, but we had no intention of really sharing our struggle. We now realize He placed us right where we needed to be so we could be ministered to in a way that we had never seen before! I don’t even remember ever fully explaining to anyone all we were facing, but God revealed it somehow. Before long Addy had an entire army around her. Even our local police chief heard about Addy’s situation and led the charge of fundraising for her. The teachers, staff, and parents at the elementary school that my children attend all took the “Polar Plunge” for her in order to raise money. Friends, family and strangers alike rallied around us and have never left our side. In our darkest moments we know the prayers and support of others have been the literal arms of God and carried us. We are forever grateful for God’s provision, and we are hopeful that each and every person who has helped us will receive a blessing that cannot be contained.

Addy has now had three major brain and spinal surgeries within seven months and two of those were done over seven hundred miles away from our home. God is faithful.

He led me to other moms and dads who spent countless hours answering questions before I even knew to ask them. He led us to Dr. Rekate in New York who has become almost a grandfather to my children.

There have been many good and bad moments in this fight. I will start by sharing the worst. Following the second and third surgery Addy was unable to swallow, and she was no longer talking at all. The speech therapist and several doctors came into the room and shared in front of her that she may have lost the ability to swallow on her own and would likely need weeks and weeks of therapy if it was to come back at all. Over the next few hours her whole demeanor changed, and she rapidly went downhill. We were very sure she may not make it through the night. I called a mentor of mine late that night, and I screamed into the phone pleading with her, “Please, please tell me what to do to save my baby!” She told me, “You go in there and talk straight into her soul as only a mother can, and you give her all your strength and the encouragement she needs to keep fighting.” It sounded very strange, but I did it. I wrote the words I spoke to her and shared them with the world later that night. I believed. I had nothing else to hold on to. Late in the morning on the next day Addy smiled at me. It worked! God breathed life into my words that night, and that life went straight into my little girl!

When Addy came off the ventilator, she spoke only a few words. “Hi Mommy!” Then she said pointing up in a circular motion, “They were up there. They said you are gonna be okay. Addy, everything will be okay.” She didn’t speak again for days. She didn’t need to. She said it all. They were there! Best. Moment. By. Far.

Addy is healing, but there is much more to fight. If you are on a similar journey my advice is simply this. You must BELIEVE. Believe there is a purpose for your hardship. Believe God is working on your behalf. We cling to Romans 8:28. “And we know that in all things God works for the good of those who love Him, who have been called according to His purpose.” Without faith and hope these disorders have the power to destroy you. In God they can be grace and gift.

You can continue to follow Addy’s story here: https://www.facebook.com/AddysArmy?fref=ts

About LeighAnne Busby in her own words:

I am a wife to Nick, a mother to five beautiful children, a friend, teacher, and a student of life. I am incredibly impatient, analytical (sometimes to a fault), and greatly flawed, but I am blessed beyond measure. I was born to a gifted, brilliant and spiritual mother who taught me more in the first seventeen years of my life than most people learn in a lifetime. Sometimes I feel that when she went to be with the Lord she poured all of her knowledge and fight into me. Music is an important part of my life. It has the ability to bring me up or make me broken depending on what I need at the time. My favorite pastime is driving alone in my mommy-mobile minivan and listening to Casting Crowns or other uplifting music (although I am known to listen to a little rap/R&B as well.) I am living my life one moment at a time and try to find God in every second of every day.

If you are walking a Gauntlet or are close to someone who is and would like to contribute to our Thursday community please email me at mkayesnyder@gmail.com, and I will send you the instructions for submitting. Share with anyone you know who might like to join our Gauntlet Story Feast. (Please use the hash tag #GauntletStoryFeast when sharing so we can find and follow one another.) Our Hope remains.

Apr 14
2015

Who Do You Think You Are?

by Monica

It’s late.
My family is asleep, and I am awake.
Nights are the longest.
Nights are the hardest.
There is no one left to convince I am okay.
There is no one waiting for me to say the right and true thing.
There is no one needing me to shine a light on their own version of this difficult life.
I am alone.

I began a new round of plasmapheresis treatments last Tuesday. After Monday’s brutal attempts to get IV access before my catheter placement I was already beaten up. A large hematoma began to form where the doctor, through ultrasound, finally found a vein in the upper part of my right arm. This along with the pain and invasive nature of the plastic tube stuck from my jugular into my heart’s main artery had shaken me. I felt like the first three treatments went as well as expected. I had the usual exhaustion, headaches and nausea, and by Easter Sunday I was wiped out. I knew something wasn’t right beyond the treatment side effects. Dan took the girls to church and to my parent’s for dinner and egg hunting. I stayed in bed. My headache was gaining momentum. When I woke Monday morning I knew I was in trouble. I couldn’t lift my head off the pillow.

Dan drove to the emergency room Monday evening at 5:30 pm.
He dropped me off at the door in the pouring rain.
I was alone.

It seems strange every time I tell it like this, but it is not for us. Dan makes sure the kids are okay. I take care of myself. Something about my demeanor made the ER staff take me back quickly even though many were waiting. The pain was so severe I couldn’t lift my head from my hands. My right eye was twitching. Stinging tears were running down my face. I keep a typed medical history with me and a list of current medication. If I’m too sick to tell my story I hope they can piece it together somehow. If nothing else the long list of operations and insane list of pharmaceuticals give me some credibility. In emergency rooms this is gold. It’s been almost a year since I resorted to going there. I hate the process and the place that much. I will only go if my pain is a 10.5 on a scale from 1-10. I live at a 4 or 5. Every single day I hurt. This was so much worse. This was scary worse.

As I laid on the hard stretcher with no pillow, I waited and tried to pray, but mostly I listened to the stories happening around me. In the holding bay next to me a woman was wailing. She wasn’t in physical pain. She wanted to die. The security guard and nurse kept probing about how many pills she had taken and whether she had any alcohol with them. Did she hear voices? Was she on her way to the crisis center? She was in tortuous pain of a completely different kind. My heart was breaking. I had been that woman before. I could hear the complete loss of identity in her voice. They kept asking the same questions. “What’s your name? Who are you? Where do you live? Who can we contact who cares?”

The doctor decided I needed a lumbar puncture to test my cerebral spinal fluid, CSF, for meningitis. After two attempts to take blood and two IV tries I became filled with anxiety. I had been given 1mg of Dilaudid for pain. If you know anything about me or how EDS affects my body’s processing of medication you know this amount of medicine is nearly placebo. I asked for Toradol. I explained this non narcotic worked the best with this kind of headache. They seemed thrown by someone not wanting to get doped up in the ER. They did not want to give me anything with blood thinning properties before an LP. Because I had this small dose of meds they asked I call someone to drive over in the middle of the night and sign a consent. This has never happened before in my long medical life. My dear parents, just back from Spain and tired to the core, answered my call and came quickly to sign the paper. I was taken down to the empty radiology floor and put face down on the freezing cold table. The same doctor who placed my cath was called out of bed to do my LP. It had to be under fluoroscopy because of the unstable nature of my spine and the brain shunt tubing there. A long needle was placed deep into my back and pulled tubes of fluid from my spine. I couldn’t stop my tears. “How long, oh God?”

Around 2 am I was taken up to the fourth floor to be admitted. I was utterly exhausted and had no real relief from my head pain. Now I was now suffering from all the needles in my arms and back. Then the process began again. My new nurse came into my room, flipped on the overhead lights and asked me the same litany of questions I just answered hours before. I kept thinking of the woman downstairs. “What’s your name? Who are you? Where do you live? Who can we contact who cares?”

One of the overwhelming feelings I get every time I’m admitted is the helplessness and bizarre anonymity that comes with stripping off all your clothes and jewelry and anything that identifies you to put on a hospital gown. You are now just a chart on a computer screen, a case to be discussed, a room whose call bell they hope won’t be rung too often. Even with the best nurses and doctors there is a very real sense of no one knowing you. The longer you are there the feeling of being institutionalized grows. Your legs get hairy. Your hair gets greasy. Your hospital issue footies get filthy as you get out of bed over and over again to unplug your IV pump and drag it into the bathroom to pee which you have to do at least every hour because of the bags of fluid they are giving you. For me this is all compounded by the frustration of being stuck over and over again because my veins are so weak and damaged they will barely give labs and my IVs will hold for only hours. I questioned why they couldn’t use this beautiful access in my chest for blood draws and meds and fluids. Oh no, that port belongs to dialysis. We cannot touch it. Okay, but it is my port, and you are repeatedly hurting me. At this point my arms looked like I was the worst skilled IV drug user ever. They were covered in tracks and bruises. A new IV team finally found a vein in the top of my shoulder that was a virgin and held. I asked for Tylenol. We can give you more Dilaudid they said. It took four hours to get an order for Tylenol from the doctor and the pharmacy to send some to me.

By Tuesday morning I wasn’t any better, but I began to feel frantic and caged. At least once every hour I fantasized about ripping my IV out and escaping. Why in the world did I come here where no one knows who I am? I’m Monica Kaye. I am the wife of a prince. I am a mother to two beautiful daughters. I am chronically ill but refuse to quit fighting. I believe in Jesus, and He is the only reason my Hope remains. I wished I could wear a sign or hand them a copy of Gauntlet With a Gift to tell them my story. I wanted them to know this snapshot of a sick woman getting treatmeant for some weird autoimmune disorder called PANDAS who came in with an unbearable headache didn’t explain me at all. This list of weird disorders called Chiari, Ehlers Danlos Syndrome, Dysautonomia, Mast Cell Activation Disorder and more were not ME.

After being “released” on Thursday I came home to sleep until my final pheresis treatment on Friday. Over the weekend I slowly began to steep myself back in truth. I kept thinking about the woman behind the curtain in the ER. I continued to think about my own identity in all this brokenness. Sunday morning I opened Paul David Tripp’s New Morning Mercies: A Daily Gospel Devotional to find this message in answer to my heartache.

Who in the world do you think you are? I’m serious. Who do you think you are? You and I are always assigning to ourselves some kind of identity. And the things that you and I do are shaped by the identity we have given ourselves. So it’s important to acknowledge God has not just forgiven you (and that is a wonderful thing), but he has also given you a brand-new identity. If you’re God’s child, you are now a son or daughter of the King of kings and the Lord of lords. You are in the family of the Savior, who is your friend and brother, You are the temple where the Spirit of God now lives. Yes, it really is true–you’ve been given a radically new identity.

The problem, sadly, is that many of us live in a constant, or at least a rather regular, state of “identity amnesia.” We forget who we are, and when we do, we begin to give way to doubt, fear and timidity. Identity amnesia makes you feel poor when in fact you are rich. It makes you feel foolish when in fact you are in a personal relationship with the One who is wisdom. It makes you feel unable when in fact you have been blessed with strength. It makes you feel alone when in fact, since the Spirit lives inside of you, it is impossible for you to be alone. . .

So if you’re his child, ward off the fear that knocks on your door by remembering who God is and who you’ve become as his chosen child. And don’t just celebrate his grace; let it reshape the way you live today and the tomorrows that follow.

Our family photographer just sent me the files from an anniversary photo shoot of Dan and I from February 2011. The above picture of me is from that day. Danica was still in her Minerva brace and wheelchair. I had come through my hysterectomy in August, 2010 knowing I needed a bowel resection, but I was literally breathing the 24/7 care my Danica needed not realizing how each day was breaking me just a little bit more in every possible way. Since this photo I have had ten of my nineteen surgeries. My body resembles almost nothing I see there. I barely remember who that beautiful woman was, but I know who I am today.

I am more than flesh and bone.
I am a daughter of the King of Kings.
The Spirit of the living God resides in me.
I am not alone.
I will never be alone.

(I am done with my treatments and had my levels tested yesterday. I am waiting to hear if they are low enough to have my catheter removed. I will begin the chemo drug for six months to suppress the antibodies from returning in hopes this invasive treatment can be slowed or avoided altogether. Please pray for my body to respond well to the new drug and for it to work as anticipated without toxicity or drastic side effects. Please be in prayer for a trip to Maryland on April 29th. I will fly alone (there’s that word again) and have a tough day of a flexion and extension MRI and then late appointment with my neurosurgeon. I will stay the night and fly home the next day. Like always the financial aspects of my out of network treatments here and these trips burden us. The emotional and physical toll are an even greater weight. My instability from C4-6 or 7 is causing a great deal of pain. I am wearing my collar more and more and praying the removal of inflammation from the pheresis will help with my symptoms. Thank you to each one of you who has been praying for my family and I, making meals, sending letters and cards, and especially those who mailed care packages to the girls during their spring break with a sick mama in bed. You are God’s hands to us. Bless you. Our Hope remains!)

What in your life causes you to lose sight of your identity? What sign would you wear so others would really see you and know you? When you begin to feel alone what Scriptures or songs bring you back to the truth of who you are in Jesus Christ?

Photo by Grace Designs Photography

Apr 13
2015

The Peace of Wild Things

by Monica

I know many of you are waiting for a health update after so much prayer and love over the past few weeks. I am slowly recovering and trying to write. Today was the first truly beautiful day this spring. Despite my exhaustion from driving myself to the doctor, waiting, having blood drawn, having a mast cell reaction to the receptionist’s hand lotion, grabbing a few things we needed at the store and driving home in time to pick up Danica at car rider, I felt this deep need to meet God outside. Instead of coming straight home and falling into bed I pushed my body and surprised Danica with a drive to Quail Hollow State Park. I brought my camera. I breathed deep and long, and my heart slowed for the first time in a long time. This is how I feel in the woods, on the trail and by the pond. This is how I feel walking the labyrinth in prayer. This is how I feel with the breeze in my hair and the sun in my face. This is how I feel when I quiet the noise and listen to His voice. I find Peace in these wild things.

When despair for the world grows in me
and I wake in the night at the least sound
in fear of what my life and my children’s lives may be,
I go and lie down where the wood drake
rests in his beauty on the water, and the great heron feeds.
I come into the peace of wild things
who do not tax their lives with forethought
of grief. I come into the presence of still water.
And I feel above me the day-blind stars
waiting with their light. For a time
I rest in the grace of the world, and am free.–Wendell Berry

Apr 2
2015

Life is a Gift. Gauntlet Story Feast

by Monica

Welcome back to our Gauntlet Story Feast community.

This week’s story is from Pamela Fenner. Pam was my very first hero in this walk. In the initial research stages of writing Gauntlet with a Gift I went back to all the messages between Pam and I on Facebook and in email. As I read through them I realized over the years we had written a beautiful book of our own. She forged the way for me in her own neurosurgeries, and Danica, in many ways, paved the way for her daughter Eden’s surgeries. Through pages and pages of detailed medical research and information about doctors and hospitals, symptoms and diagnoses and medications and therapies there is a beautiful thread of faith and friendship. It is a sturdy life line held in the hands of two women who have intimately shared and grown through the most painful challenges. Pam is perhaps the most giving zebra I know. She is a support to many in their walks while at the same time tirelessly advocating for more research and better understanding of Chiari, Ehlers Danlos and other accompanying disorders among physicians and anyone else who will listen.

Pam will be heading back into surgery this coming Tuesday, April 7th, for fusion of her C5-C7. Please pray for her and for Dr. Henderson. Please pray for her dear husband and children. Please pray for strength and healing.

Life is a Gift
by Pamela Fenner

“Life is a gift. Regard it as such. Return the blessing through each life you touch. Every seed planted springs forth new birth. Allow your bouquet to cover the earth.”–Lorna Jackie Wilson

My world had been rocked to the core. One doesn’t imagine their life can change in the blink of an eye. I never imagined handing my daughter over to a neurosurgeon four times (now I know that number will only increase over the years). I never imagined that I would need a brain surgery, along with a spine surgery, to attach my skull to my neck just to stay alive five years ago. I never imagined more brain surgeries would be in store for my daughter and I. I never imagined more spine surgeries would be in store too.

Living with Chiari and Ehlers Danlos Syndrome teaches you to expect the unexpected. Be prepared when they check your heart they are going to find something major. Be prepared they are going to find something major in most of the other places too. EDS involves a defect in collagen which makes up the entire body so even your blood vessels will be affected. Be prepared to find out these conditions have no cure (surgery is only a bandaid) but worse, these conditions are poorly understood and lack research and funding. Be prepared to have to arm yourself with knowledge so that you can be the best possible advocate for yourself and for your children (you unknowingly passed this onto them) as it will become your job to bring everyone up to speed. You will fight for your lives until you make it to a doctor who understands and can help. There will be plenty of days when you can barely lift your head off of the pillow, but you will have to, because your child is suffering too and needs you. The surgeries, the daily pain, all of the medical appointments, dealing with insurance, the mounds of medical bills . . . they can suck the life right out of you. Just when you might start to see light at the end of the tunnel something else rears its head, and you are thrown right back into the abyss.

At some point in time you accept the hand that you have been dealt. You convince yourself that just because you have these conditions it doesn’t have to mean that they have you. You learn to put on a great game face, become quite good at suffering and smile to hide the pain. You become kinder as you realize that everyone faces battles. Theirs are just different from yours.

I have always had what I thought to be strong faith, but evidently God thought it could stand to be a lot stronger. The storms kept coming over the years and each time I would let worry, fear and stress consume me. I learned to live in “survival mode.” When my daughter’s Chiari symptoms were the worst I would go into her room several times a night to check on her just to make sure that she was still breathing. My son had blood sugar that plummeted (especially during the night), and I would go into his room and check his blood sugar while he was sleeping. I never slept back then. My daughter would have one surgery and start to do well, and then things would go haywire again, and she would develop a new problem. In my son’s case it took nine years to get to the root of his low blood sugar, a rare Carnitine deficiency. His doctor asked me if I was sitting down before she delivered that news to me over the phone. In the midst of things I had my own serious problems that needed attention, but we learned to survive daily by triaging who was worse. I squeezed in my surgeries when an opportunity would present itself, and the light at the end of the tunnel would start to dim again. The stories I could share are unimaginable to most, and unless you lived under our roof you really have no idea. Things never let up and the stress, fear and fatigue were draining. There was no end in sight. This was our life. This is our life.

Surgeries and treatments over the past few years have certainly been miraculous, helping so much, but when you live with chronic conditions, there never is an end in sight. The stories will remain unimaginable. Today, I no longer fear the storms. They have made me stronger and because of them, an indomitable spirit now resides inside of me. The storms have taught me that worry and stress won’t ever change the outcome, but that they will take away the day’s sunshine. I learned that fear doesn’t prevent death, but instead prevents life.

My faith is much larger now. It is impossible to endure difficult times without huge faith. There is no longer a reason to live in “survival mode” once you “let go and let God.” I have been given the opportunity to see life through a different set of eyes. I now see everything I didn’t notice before when I was too busy and too distracted. When you don’t have your health you learn very quickly what a precious gift life really is. You begin to not take one day for granted. You realize that the secret to having it all is already knowing that you do. Perhaps I have been given a gift wrapped up in a daunting medical diagnosis.

About Pam in her own words:
I spent years trying to figure out the cause of my headaches and other symptoms after my son was born fifteen years ago. I was diagnosed with “Migraines” and “Fibromyalgia” back then. I had gone from living a pretty healthy life to a life full of symptoms that snowballed out of nowhere. My head pain and symptoms became much worse after the birth of my daughter six years later. She had difficulty with crawling and walking and at two years old was sent for a brain and full spine MRI. The radiologist handed me the report before we left the hospital. I will never forget that day. That is when I heard the word Chiari for the first time. I immediately Googled it when I got home. It was at the moment when I realized what I had been suffering from for years, and it was not long after when I learned about Ehlers Danlos Syndrome. In 2009, all three of us were diagnosed with EDS by genetics.

I am so thankful for the amazing support system of the online community that has been created by patients and families living with these conditions. I have met so many wonderful people on this journey who have been there for my family and I even during some of the most difficult days of their own lives. They “get it.” Sometimes no words need to be exchanged. What a beautiful gift, to be carried by others, when life has knocked you down.

If you are walking a Gauntlet or are close to someone who is and would like to contribute to our Thursday community please email me at mkayesnyder@gmail.com, and I will send you the instructions for submitting. Share with anyone you know who might like to join our Gauntlet Story Feast. (Please use the hash tag #GauntletStoryFeast when sharing so we can find and follow one another.) Our Hope remains.

Photography by Cindee Snider Re. Used with permission.
Quote taken from Michele Cushatt’s new book Undone: A Story of Making Peace With an Unexpected Life.

Mar 25
2015

Gauntlet Story Feast

by Monica

I sometimes wonder what it was like to be chronically ill before the internet. It’s really only been in the last fifteen or so years we have been able to search our symptoms before a doctor’s appointment or run to WebMD after a diagnosis and then find a support group immediately of people who have the same illness we have. We have access to medical research and journals that were only available in print and to a select few prior to the information age. We’ve become experts in ways even our best doctors cannot. In the last ten years social media emerged. In addition to the wealth of knowledge we also have countless Facebook groups, public and private, to ask questions about our diagnoses, share information on the best physicians and our experiences with them, post imaging and swap medical articles related to our illnesses. We have hashtags for our conditions. We create YouTube videos to raise awareness and give others outside our sick community a window into what day to day life is like. We create fundraising pages to share and be shared in an effort to pay some of the exorbitant price of continuing our fight for the most whole life. We have Caring Bridge pages to keep family and friends updated during surgeries and treatment and some of us have chronicled our stories with great candor through personal blogs. As HIPAA is cracking down even more harshly in medical settings, we, as patients, are going further and further down the road of willingness to open up about our personal health information with anyone and everyone who will listen.

Jodi Piccoult writes in her book Second Glances,

Heroes didn’t leap tall buildings or stop bullets with an outstretched hand; they didn’t wear boots and capes. They bled, and they bruised, and their superpowers were as simple as listening, or loving. Heroes were ordinary people who knew that even if their own lives were impossibly knotted, they could untangle someone else’s. And maybe that one act could lead someone to rescue you right back.

One of my deepest desires wrapped up in writing and publishing Gauntlet With a Gift has been to create a beautiful space where the many heroes who have helped saved me and are untying one another’s knots can also share their own stories. I have already purchased what will be the eventual permanent home of this project but for now I plan to bring our community together here on my blog every Thursday. These posts from my brave friends may be short essays about challenges they are facing now, thoughts on chronic illness in general, hopes for their future, specific needs and fundraising links, a poem they’ve written, a story about love or kindness shown to them, or a narrative about a special physician or nurse who has been an angel in their journey. They will be varied and are meant to show as a collection the many aspects of our struggle. More than anything I want you to see the gifts along our very difficult paths and understand the courage we find in unsuspecting places to keep hoping and fighting for the best life possible.

Tomorrow I will post the first story. I have gathered a small group who are already slated to share for the first few weeks. If you are walking a Gauntlet or are close to someone who is and would like to contribute please email me at mkayesnyder@gmail.com, and I will send you the instructions for submitting. Share with anyone you know who might like to join our Gauntlet Story Feast. (Please use the hash tag #GauntletStoryFeast when sharing so we can find and follow one another.)

Dan Allender shares this thought in To Be Told: God Invites You to Coauthor Your Future,

We human beings are meant to be celebrated. We are meant to be the subject of tears, struggle, and heartache, of raucous laughter, wonder and joy. We are meant to be birthed into the care of others who know and love our story.

One of the greatest gifts in my own Gauntlet is the caring and knowing of others.

My story matters.
Your story matters.
Alone we cannot manage all this.
Hand in hand we can experience it, walk through it and do the very best we can.
Together our stories can untie impossible knots and rescue one another over and over again.

Our Hope remains.

Photography by Cindee Snider Re. Used with permission.
Quote taken from Michele Cushatt’s new book Undone: A Story of Making Peace With an Unexpected Life.

Mar 16
2015

Personal Retreat as Spiritual Discipline

by Monica

“But Zion said, “The LORD has forsaken me, the Lord has forgotten me.” Can a mother forget the baby at her breast and have no compassion on the child she has borne? Though she may forget, I will not forget you! See, I have engraved you on the palms of my hands; your walls are ever before me.”–Isaiah 49:14-16

It was January, 2011, and my first resolution was to discipline myself to make time alone. My Danica had been through two major brain surgeries and a fusion that kept her in a body brace and a wheelchair. Our journey began in May, 2009, when her little eighteen month old neck went crooked. Every moment of my life became about finding her diagnosis, taking her to therapy, seeking treatment, scheduling surgery, fighting for resources, keeping her safe and soothing her pain. I was with her twenty-four hours a day, seven days a week.

I have always been one of those people who needs regular periods of being alone to be okay. The constant input of my children, my husband, friends, family, the internet, TV, social media and my blog swirl together and muffle the cry of my soul to be still and know God. The hairs on the back of my neck stand up when I hear the catch phrases about putting myself on the list and taking care of me first so I’m there for others. This all seems to point to selfishness of some kind, and I’m pretty steeped in the martyr life by this point. While working through Adele Calhoun’s Spiritual Disciplines Handbook I have come to realize the desire of my heart to retreat and be near God is not rooted in selfishness at all. It is a necessary spiritual exercise to strengthen my faith and remind me who I am in Christ. I am not just a wife, a mother, a daughter, a sister, a friend . . . I am a child of God.

Adele writes in her chapter on Solitude,

Solitude opens a space where we can bring our empty and compulsive selves to God. And no matter how well we ‘do’ silence, God is there to accept, receive, and love us. In solitude we see how little we embrace our true identity in Christ. And we find the truth of who we are in Christ. We are the beloved, and God is pleased with us. This identity is given; it is not earned. Many other voices pull at us, seeking to own and name us, but in solitude we learn what it is to distinguish between the voice of God and the voices of the world.

My identity was slowly stripped away from me in new ways when I became even more ill than my girl. I couldn’t work in gainful employment. I couldn’t care for my children without help. I couldn’t be a true helpmate to my husband. I couldn’t participate in corporate worship. I couldn’t be a good sister or daughter or friend. When I woke up from my first brain surgery and fusion without the vice grip on the back of my neck one of my first thoughts was, “Who am I going to be if God chooses to remove this thorn in the flesh for good?” The answer is simple. I am a child of God. This identity never changed because of my ability to perform any duties. I am His beloved. There is no guilt here. There is no shame. I don’t have to produce anything or be recognized by anyone else. My name is written on His hands!

I left my family last Saturday. I checked into a local hotel for forty-eight hours. No one besides my husband and girls knew I was there. No one needed me. The world was moving on without my thought or action. I didn’t turn the TV on. I didn’t listen to music. I was very still. I inhaled and exhaled prayer like air. This is one of many times since New Year’s 2011 I have packed my bags and gone away to be alone with God.

In practicing personal retreat I am reminded I am “Preapproved.” I realize how much God delights in my drawing near to Him. The verses above are my dad’s “go to” verses when he visits the sick and people headed into surgery. Dan and I joke he needs to find some new material for repeat customers like us who seem to find someone in our family on a stretcher in a hospital several times a year. The truth is I find great comfort in these words. God paints a picture we can all understand and relate to. Tonight I kissed my fingers and touched the picture of my girls and I. Beside it is the sweetest picture my Danica Jean drew of her and I. I was thinking about how impossible it would be for me to ever forget my children. I breathe them no matter what else I am doing. This is how God feels about me but perfectly. I ran to get a Sharpie and wrote my name on my hand. No matter what I do it’s there. He never forgets me. Not just my name but my likeness. I am never off His mind or away from His sight or out of His care.

I trace the scars in the hands of my Savior and see my name embedded there.

Mar 1
2015

What Can I Bring to Your Fire?

by Monica

This blog post was originally published on August 18th, 2013. Friday was Janet’s birthday. I can barely remember what the landscape of my life looked like before knowing and being known by her. I celebrate her every day.

I have seen them in cities, and in my own neighborhood,
nor could I touch them with the magic that they crave
to be unbroken. Then, I myself, lonely,
said hello to good fortune. Someone
came along and lingered and little by little
became everything that makes the difference.
Oh, I wish such good luck
to everyone. How beautiful it is to be unbroken. –Mary Oliver

It’s a quiet morning here because Dan has taken the girls to church. I woke up locked in my room. My neck doesn’t move at first when my eyes open. I remember I had surgery, and I need to heal today. This is what Sunday looks like for me. Healing is my one job. I call out to have Dan bring me coffee. Normally I would go out to my nest chair and drink it while everyone else comes to life around me. Twix will crawl into my lap for snuggles and then Danica takes a turn. Today I can’t seem to move. I call Dan again to please come and get out certain pills for me to take that may raise my cortisol level, help with pain and also loosen up my poor neck. He seems annoyed. He doesn’t ask me how I slept, although I ask him, and he doesn’t ask me if I need something to eat or nibble on before I swallow six super strong pills on an empty stomach. It doesn’t even cross his mind. I don’t ask. Since I’ve been home it is much like other surgeries. I am put into my room with the door shut. I think my family looks at it as doing me a favor. The kids jiggle the bed which hurts my neck. They are loud and silly. Mostly because of the pain and meds too much input sets me off. Still, I have missed them incredibly and being alone hurts in the worst way. As they all leave for church the attitude is negative. I asked Delaney to read me Psalm 37 out loud. It’s one of my favorites. All I can feel is this rope of bad energy tightening around me. The house is a mess. As soon as they leave I cry for ten minutes straight. You know the kind of sobbing where you are just gross snot pillow soaked blotchy face and chest heaving crying? I am given a week in Maryland and that is it. I have to be better. Tomorrow Dan will go to work. I will be here alone with my girls. Delaney starts school Tuesday. Wednesday Danica has kindergarten preview and Thursday they will both be back full time. In between here I am supposed to just be mom. I’m supposed to lift up this neck and do all the things people say are stupid and careless to do following this surgery but there is no one else to do them. I am not supposed to move my neck in flexion or extension for a month. In other words, hold very still. Aside from the surgery where I went away to heal at the lake house this is how it has been. My family can barely scrape together enough time off and energy to do the mom is in the hospital thing. When my ride dropped me off yesterday my dad was waiting with his keys to leave. I asked him to please wait until Dan got home. I haven’t heard from my mom at all. I just can’t be alone yet. Dan does not function without me. He is angry at this situation. I get this. It’s maddening. But I wonder if anyone is thinking about what it must feel like to be in this body and mind and soul. Do you know what incredible shame I feel to be causing all this over and over again? He cannot come and sit with me and talk to me about how I am feeling. Even in the hospital he sat there the entire day after my surgery saying nothing. I felt so insanely alone and guilty and wanting to just let him off the hook for all of this. I always want to say to him, “You can run. It’s okay. I would totally understand.” This surgery is huge. It’s a big deal. For me, even more than the physical, it’s a mental and spiritual choice I made to try to be better. I did this only four weeks after a major abdominal and pelvic surgery. I made this choice because my husband has been given an opportunity to perhaps take on a larger role at work, my girls start school this week and last year I was completely bedridden when school began with another surgery and then another and it hurt Danica’s adjustment greatly, and my mom is completely unavailable in every way this time of year. Her family is the 600+ students entering those doors Tuesday and my dad is preparing to go to China and India for a month and good grief, how much longer can things keep being about me?

Why after all these years of blogging am I saying these things now?

Because something changed me.

Ninety nine out of one hundred of you may feel like this comes across as ungrateful, but if you know me you understand my spirit is only full to overflowing for every ounce of love and support from every corner of the universe, especially the sacrifices my parents have made. Still, what was given to me this time was something I have needed since I was a child. There has been a deep longing for a mother to care for me. Someone to just focus on me and build relationship. I have needed it so badly it is actually part of my sickness. I know this.

There she was.

An angel.

A woman I didn’t know personally until two weeks ago made this crazy offer. I didn’t really even think she was serious at first. She offered to come after my surgery and get me since Dan needed so desperately to work. Everyone who heard of this felt it was very strange. She bravely drove with her own physical limitations from Ohio to Maryland. She fed me. She took me on a hilarious trip around the beltway for prescriptions. She rubbed my neck and shoulders. I don’t think anyone had offered to touch me like that in months. Did you know you need human touch to be okay? I have been like an orphan tied to a crib. Failure to thrive. I need to be touched. She listened to me. I listened to her. Her daughter is sick with the same conditions I have. I think perhaps the windows into one another’s roles in all this was one of the greatest gifts. We talked for hours and hours and only scratched the surface of what our souls could share. I would fall asleep mid sentence and then wake and begin where we left off. She would quietly slip off as if knowing I needed space and then appear just when I was needing her. Gift. Gift. Gift. When everything else falls away WE are gift.

Before Danica’s major surgery in Cincinnati I wrote this post with a link to a song by Christa Wells that is truly my life song. I am amazed when one of the “thousand things” shows up. Christa’s new CD “Feed Your Soul” was released on Tuesday, the day after my surgery. I downloaded all the songs first thing that morning, and they played over and over in my alone time in the hospital. The song Come Close Now describes what Janet did for me.

God, every single step of this arduous journey You have given me Dayenu. It would have been enough. This present of knowing and being known makes me healed in places I thought would be broken until heaven. Even in my sadness today I understand I can only meet people where they are in their own journey. All the rest You will care for perfectly as I burn. Thank you for giving me someone to walk into my fire and just feel the heat of all this without shrinking back.

Do you know someone who is sitting in the burn today? Go close. Sing. Hold them. Be there in the fire. It will make all the difference.

Feb 25
2015

Heal the Wound but Leave the Scar

by Monica

It was our first night. After an exhausting day of travel we thought we would check in to the hotel and crash. Instead, the first whiffs of fresh mountain air gave us a second wind. We felt the enormity of the gift we were given in this time away and didn’t want to waste a minute. I changed out of my airport clothes and slipped my freshly pedicured feet into open toed shoes. We floated down the grand lobby staircase hand in hand and settled in to a cozy spot on the expansive patio overlooking the city lights. I’d been there before. I loved sharing the nightly tequila ritual and toast and special menu secrets at Salud. We sipped drinks made with cucumbers and fresh agave juice. Something shifted as we bared our souls in several hours of conversation under the Tucson stars. We hadn’t wanted to admit the way we were holding insecurities and hurt in tight fists. Now we wondered out loud. How long had we moved through the motions of marriage? Recognizing one another’s unique fragility we cared too much to make even the slightest movement. We knew even one bump had the possibility of upsetting our delicate balance of survival. With open hands and hearts we purged the pain and sadness and cast it all in the fire on our way up to our room. It was a fresh start like only Jesus makes.

The next morning we woke tangled up in silky white sheets and duvet after the longest exhale of love. It had been years since we had the time and place, desire and energy to slow our intimacy to the metronome of breath. For the first time in almost eight years I let him fully see me, and he wanted to look. He traced every single scar with his fingers, and we took turns telling the story together. Not my story. Our story. I never doubted we were one heart, but something about all those wounds often made one flesh a difficult proposition. With every surgery and every long recovery I felt a gulf widening between who I once was to him and who I had become. Suddenly I could see in his eyes and hear in his voice a truth I’d not known before. He loved me even more because of the suffering not in spite of it.

Today marks a week since we returned home. When I stepped out of the plane onto the jet way here the temperature was below zero. I began to cry. I rounded the corner in the airport to see my Danica running towards me bundled from head to toe. I was wearing ballet flats with bare tan feet exposed and no coat. I hugged my sweet girl and cried even harder. Coming back here, a place I know causes very specific pain and many of my symptoms, was heart breaking. Dan looked over and winced as he saw the Monica Kaye he had reclaimed already slipping away.

It was a week ago I exiled myself with my Savior for His forty days in the wilderness. I’m daily sitting with Christ as best I know how. I’m listening to His heart as He prepares for the immense sacrifice He’s been asked to make on the cross. I am brought face to face with a God who knows every ugly sin I’ve committed or will commit. He sees my unspeakable mistakes and feels the bitter shame that wounded Him. His humanness, his hunger, his temptation, his pleas for release from this before the world began plan break me again and again. He is God made man. He sympathizes in every way without sin. My redemption could only come through a sacrifice this understandable and this unexplicable.

I’m walking closer to the days when I will see Him crucified. The wilderness, however uncomfortable, is just a preparation for the week when I will have supper with Him, tell Him I love Him, turn around and deny Him and then watch Him take the lashes, carry the cross and be wounded for my transgressions. At the last hour He will be completely forsaken by His Father and suffer hell for me.

When I’m face to face with Him I know for sure the scars I bear both inside and out are completely redeemed. His dying love stops my breath. His resurrection starts it again.

Since Tucson I pray for fresh starts and new beginnings. I long to live in a place that gives me a more whole body and healed spirit for my husband and daughters. I ache to take all this pain and turn it into a beautiful ministry for others walking this similar road.

When I’m face to face with Him. When I remember His love for me. I trust Him completely.

Every cut of my flesh has healed into a bumpy red reminder of God’s mercy to me. Every sharp memory of sadness and sin has kept me on my knees even though I’m completely free.

Dan and I hiked several miles up a mountain into the Sonoran desert. On our way we stopped to build Ebenezers. Each of us chose seven large stones to symbolize our seven years of tribulation. They stand as altars to God’s faithfulness. We were living something impossible. We were away together on vacation. I was hiking. I was breathing. I was well. We lifted prayers of gratitude as we moved on and my Dan began singing softly as he led the way.

Come, thou Fount of every blessing,
tune my heart to sing thy grace;
streams of mercy, never ceasing,
call for songs of loudest praise.
Teach me some melodious sonnet,
sung by flaming tongues above.
Praise the mount! I’m fixed upon it,
mount of thy redeeming love.

Here I raise mine Ebenezer;
hither by thy help I’m come;
and I hope, by thy good pleasure,
safely to arrive at home.
Jesus sought me when a stranger,
wandering from the fold of God;
he, to rescue me from danger,
interposed his precious blood.

O to grace how great a debtor
daily I’m constrained to be!
Let thy goodness, like a fetter,
bind my wandering heart to thee.
Prone to wander, Lord, I feel it,
prone to leave the God I love;
here’s my heart, O take and seal it,
seal it for thy courts above.

My song today.

Heal the wound but leave the scar.
A reminder of how merciful You are.
I am broken, torn apart.
Take the pieces of this heart and
Heal the wound but leave the scar.

I’ll build an altar of the rubble that You found me in and every stone will sing of what You can redeem.

Don’t let me forget everything You’ve done for me. Don’t let me forget the beauty in the suffering.

Heal the wound but leave the scar.

(This beautiful song by Point of Grace has been on my “healing” playlist for years.)

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