Archive of ‘Writing and “Gauntlet With a Gift”’ category

Bloom. A Team Danica Update and 2012 Repost

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Danica6weeks

Six weeks ago Danica was coming out of huge brain and spine surgery and getting settled in the PICU at Johns Hopkins Medical Center in Baltimore, Maryland. If you’d been there and whispered in my ear that she would be home today doing math and language homework, playing Legos and breezing through an OT evaluation, I wouldn’t have believed you. If you’d told me the first weeks post-op would be the greatest test of physical, emotional and spiritual endurance we’ve ever experienced, but, if we held on, it would become the most miraculous part of our Gauntlet story yet, I wouldn’t have believed you.

It’s true.

The healing.

The absence of pain.

The hope.

The miracle.

It’s true.

Six weeks later it’s all true.

Twelve weeks ago I was coming out of a major spinal surgery at Doctor’s Community Hospital in Lanham, Maryland. If you’d come along side my bed while I was struggling for oxygen and writhing in pain and told me I would survive the trauma of the next three months, I wouldn’t have believed you. If you’d told me God would not only meet every single need but lavish love on us in ways we never could have asked or thought, I wouldn’t have believed you. If you’d told me I would have the greatest hope for my Danica’s life and perhaps even my own, I wouldn’t have believed you.

It’s true.

The provision.

The love.

The hope.

The miracle.

It’s true.

Twelve weeks later it’s all true.

I’ve been a ‘One Word’ person for a long time now. I began writing about my 2017 word last night. ‘Bloom’ was the runner up. I didn’t remember the following post from the old Team Danica blog, written on January 4th, 2012, until it popped up on my facebook memory feed this afternoon.

Tomorrow I have a meeting at Lake Center Christian School with Danica’s teachers, guidance counselor, special needs coordinator and principal to revise her 504 plan so she can return to school for half days next Monday. She will use the wheelchair initially to protect her fusion and her healing rib graft. I know she is ready and trust she will be safe and loved, but I am facing my own ache of letting her go. I’m facing the great mother “risk” so my girl can blossom again.

Getting readypschool
“And the day came when the risk to remain tight in a bud was more painful than the risk it took to blossom.”–Anais Nin

My dear friend Angie facebooked this quote to me today. It’s not strange that her kindred heart would know this is the very quote I was thinking of this morning as we walked our Danica Jean in the doors of Lake Center Christian School for her first morning of preschool.

It’s all been a risk with this child. The pregnancy was high risk for her and especially for me. Her birth was an emergency and very dangerous. The methods we tried to fix her tortocollis and find the real root of her pain and growing diabilities were risks. The many exposures to radiation were a risk. The first brain decompression was so scary. At her age we knew going in the outcomes were mostly just buying time. Just a few months later we began the fight to find answers anywhere we could because the first surgery was already failing. This led us eventually to her second surgery and fusion. It was riskiest of all. No one wanted to do this surgery although all the experts agreed it needed to be done. Every day after October 5, 2010 EVERYTHING became risk analysis. For more than a year we kept Danica from doing almost anything normal three year olds would do. We said “No”, “Be careful”, “Watch out”, “Hold my hand” and the words “We have to keep your neck and brain safe” more times than I could ever count. Have you seen her beautiful white swan neck? Have you? Do you believe in miracles? Have you ever witnessed one? Have you ever lived one?

Danica had many dreams of her own as she patiently waited in this bud of hope all these years. Attending preschool is one that fell right under her Disney wish trip. She is exceptionally bright and more than ready for this social interaction, time away from her mommy and lots of learning and exploring. We are beyond blessed she is able to begin it at such a special place where so many of the school families have been praying for her for years, following her story and loving us well. Danica is like a hero there. Everyone knows her face and name. My mom’s office is just across the hall from her room too. It’s pretty amazing to have your grandma be your principal!

This cold January morning was a day we will never forget because our family got up TOGETHER. Danica excitedly got dressed and was bursting at the seams with anticipation to bloom. She had no anxiety at all. She has lived in a world of adults and scary machines and pain and limitations. This day was not tapping into courage at all. It was only joy for her.

Hanging up stuff

We went in. Danica hung up her coat and bag in the little foyer area, and she signed herself in on the board. The other children were ready for her. Mrs. Barber, her teacher, was waiting with open arms. There was no look back to me for any reassurance. She was gone in a second to wash her hands and choose an activity. Dan and I stepped out of the door, and I let a few tears fall. Mrs. Pappano was just outside. She gave me a hug and reminded me how everyone there already loved Danica and would take such good care of her.

Signing in

Danicaand MrsBarber

I was supposed to begin physical therapy this morning, but there was some mix up with the prescriptions getting faxed over so instead Dan and I went to breakfast. He brought me back here to the lake house, and we snuggled for a little while which is such a rare treat. I can still smell him, and it makes me feel less alone. As soon as Danica left at 11:30 Danica’s teacher emailed me to share what a success today was and how Danica instantly blended in. She said they had a large motor skill activity that would be on Danica’s restriction list and Danica was sweetly compliant to sit out. I loved knowing especially they were taking her safety seriously and understanding the limitations that remain. I called Danica at home to talk to her about her morning, and Dan said she got home and said, “We need to take naps!” She had gone in her room to take some down time already. This is so Danica. She takes rest when she needs it. She is in many ways so much wiser than her age. She is a rare flower.

Last night I stayed at home and tucked each of the girls in like normal since Dan is working nights for the next month on her preschool days. Danica fell asleep in five minutes as “Sleep Sound in Jesus” played, and I rubbed her back and sniffed her sweetness. I lingered. Then I made my way across the hall to my Laney. She had so much new art to show me and we talked about print making and how her designs of colors and patterns could be used in fabric or wallpaper and other ways, expanding her understanding of how art could be her career. She talked and talked to me, trying to catch me up on the weeks I’ve missed, and then she said, “I’m sorry I’m so chatty tonight. I just missed you.” Oh, special girl of mine, me too. So much. We hugged and prayed and then I slipped out to my own bed. I cried. It’s going to be okay. There are so many more blossomings in our coming year. I know it. Thank you, God.

I’ve been working on my “vision board” for 2012. It’s like the quarterly collages I make only on a much larger scale. I found a picture of bulbs coming up through a late spring snow. I have this quote beside it,

“Underneath the drifts, seeds are waiting. Their courage is incomparable. Their patience unequaled. Hunkered down and hopeful, they sit out the frozen tundra, knowing and trusting that spring eventually will arrive. If ever you feel unsteady in the face of life’s winters, consider seeds and their faith.”–Tovah Martin

Spring always comes. Today was a little taste of how seeds of faith and patient waiting on God always bloom into something beautiful.

“Those who sow with tears will reap with songs of joy. Those who go out weeping, carrying seed to sow, will return with songs of joy, carrying sheaves with them.”–Psalm 126:5-6

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Cliché Cringe. Celebrating Soul Bare. And a Giveaway

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#SoulBare
“Inauthenticity, hiding and pretending to be someone we are not, leads to shame. Refusing to be vulnerable for the sake of preserving pride and self-image destroys the possibility of living in Jesus’ freedom and joy and hope.”Jennifer J. Camp

I hate bandwagons. I can love something like crazy, but if too many people start to love it too I become suspect. The road less traveled, the narrow gate, the eye of a needle…these are the things I want to be part of. I’m a fan of precise words, and I hate the cliché, especially Christian ones. Here are a few I’ve tried to weed out of my vocabulary in the past few years,

Authentic
Transparent
Vulnerable

I used to appreciate them, but then everyone, and I mean EVERYONE, started saying they were suddenly telling the whole truth about everything. And I cringed. They became fingernails on a chalkboard. I would hear them or read them, and I’d get a mini barf in the back of my throat.

I wrote Gauntlet with a Gift out of context…without the memoir that came before. And then the doubts came. Why would you believe all this suffering was a gift of scandalous love and Grace if you didn’t know what I was rescued and redeemed from? I didn’t tell you about the child who found Jesus and then lost Him. I didn’t tell you about the ugly, abusive church that keeps me from going to this day. I didn’t tell you about how being a victim of violence triggered the sudden onset of a prodigal life or how I became a self made orphan, a drunk, a slut and then a prostitute, a thief, a murderer, and an adulteress. All of you reading my old blog day after day and following our hard on social media saw me stumbling in faith but always finding my way back to Dayenu. Even this was enough. It was more than enough. It was more than I deserved. I was daring to call it good as long as He was getting the glory. None of this makes any sense unless you know the before. So I saved Gauntlet away. I took the Scrivener short cut off my desktop, and I claimed “Listen” for this year. I’ve written almost nothing. I’m less true. I’m more covered. I’m more guarded. I fear the cliché. I’m terrified of the overshare.

Part of the listening has become a Spirit led passion to read well and support other writers who are brave truth tellers. Mostly offline. Slowly God has allowed me to form authentic relationship with these transparent and vulnerable Jesus people. I am realizing their stories are layers of sin and suffering saved by Grace and faith just like mine. Sometimes their middles need told before the beginnings. Sometimes they stand alone. There are no hard, fast rules to this messy business. I’m also understanding as much as our narratives have similar chords they are also uniquely ours and, yes, each and every one has the power to help and heal, sometimes others and most of all ourselves.

A beautiful anthology of short authentic, transparent, vulnerable stories from friends I know and friends I’d like to know were born through a midwife, Cara Sexton. The book is Soul Bare. Some of the writers I’ve had the great privilege of meeting face to face. I’ve shared meals and worship and sacrament with them in sacred space. Some of the stories are from writers I’ve never heard of. They don’t have book deals or speaking obligations. They have small online places where they shed pretense and practice real. As blogging fades into podcasts and live video streaming, there are still plenty of us who wish we could stay in 2007 with our one hundred faithful readers (was “following” even a thing then?) and just lay it down day after day in words. If you miss that kind of intimacy, you will love this book.

Cara ends with this beautiful description of “what it means to be soul bare…”

…This is what it means to seek God with all our heart and mind and soul. It does not mean, as anyone who has ever lingered in Christian subculture may suspect, that we have reached a pinnacle of faith–that we have simply believed hard enough.

It is to be lost and found, over and over again. It is to recognize the upside-down nature of the things of this world. It is to know that even when we are lost, we have a finding place. It is to know the word ‘help.’

Even when we have no words, even when we have only blindness and cannot take ourselves to the Word made flesh, He comes anyhow, somehow…He comes, and against all odds, we see.

Cara isn’t one of the writers I knew. Just before this book was published one of the other writers included in the book, a mutual friend, connected us for an entirely different reason than words. Cara has been a chronic illness warrior for years with muddied diagnoses. They just found her Chiari malformation. Oh how I wish I had a printed copy of Gauntlet to mail her. Maybe, just maybe, Danica and I’s story matters just as it is.

I’m celebrating Soul Bare with a giveaway!
Here’s how to enter:

1. Share this post on social media to give your friends a chance to win this amazing book.
2. Please leave a comment here about what being authentic, vulnerable and transparent means to you.
3. Please say a prayer for my new friend Cara.

A winner will be randomly chosen from all the entries on Monday night, August 15th, and announced Tuesday morning from my chemo chair.

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Holding It All Together. A Team Danica Update

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My Danica girl woke this morning and shuffled her way to my lap. She knows she will always find me sitting in my corner chair wrapped in a cozy throw with a cup of coffee in my hands. I put my steaming comfort aside, and make room for her. Her lanky legs stretch almost as long as mine now. She’s so tall it’s hard to kiss her head, especially with my fused neck, but I always try. Our fingers entwine, and I squeeze her hand as if to say, “Good morning, my dear. No matter what today brings I am here for you. I love you. Jesus loves you more.” Some of my favorite talks happen as she shakes off her sleep and begins to think out loud. Today her words took me off guard, “Mom, If God is in control of everything why did He even let sin and sickness happen?” I stumbled as I backtracked to Eden. Things were perfect, but there was this one tree. All God asked was for them to remember He was God and they were not. I see her reaching to make it more personal. Life is pushing her outside her mother’s faith and asking her to claim her own. Her next question knocked the breath from my lungs. “Mom, why did He take my miracle away?”

“It feels like an ocean of sorrow is under my skin…”

I haven’t been able to find words to tell about our trip to Cincinnati on July 26th. We left with incomplete information that has been filtering in since. Today we have more questions than answers. Danica’s rare and messy case has been escalated to new surgeons. We have been asked to return to Cincinnati quickly, on Thursday, August 18th, to discuss a joint effort with neurosurgery and orthopedic surgery.

“Even the ocean eventually meets with the sand…”

Since our March trip, when the scans showed the shocking views of broken hardware and broken fusion from Danica’s skull base to C1, we knew this was coming, but we thought we had months to watch.

“Sorrow on sorrow I’m waiting. Heavy I’m anticipating…”

My mama gut, made much more wise from years of reading X-Rays, CTs, MRIs and radiology reports in addition to dozens of neurosurgical and fusion surgeries of my own, told me the hardware was not the most concerning problem. Yes, it’s broken. It’s broken unevenly and moving on flexion and extension, but Danica’s own words told me instability was the greater issue. “Sometimes when I wake up my neck is stuck, and I have to reach up my hands and put in back in place. I hear a click.”

“Trusting the current will carry me.”

I finished my plasmapheresis before our trip and began my first of four chemo treatments on Tuesday. I’m worn so thin I’d swear you could see right through me. My dear friend came to sit with me at the cancer center. I told her how I was feeling. I cried. It’s as if those closest to me…closest to Dan, Delaney and Danica, don’t seem to understand this could be the thing that breaks us. It’s been almost a full decade of hard that can never be quantified. Dan is numb. Delaney is sad. Danica is scared. I’m completely and utterly broken. She told me I don’t wear it that way. I put on a clean shirt and some makeup. I smile and deflect the conversation to you. I say words about God as if the speaking makes them true.

“You are my strength. You are my song. You are my salvation. You hold it all together. You hold it all together.”

He is God. We are not.

“We come with great expectations and fears in our hearts.”

I didn’t know how to answer Danica this morning, so I reached for my Bible and turned to her life passage. My life passage. I read Psalm 139 aloud.

You have searched me, Lord,
and you know me.
You know when I sit and when I rise;
you perceive my thoughts from afar.
You discern my going out and my lying down;
you are familiar with all my ways.
Before a word is on my tongue
you, Lord, know it completely.
You hem me in behind and before,
and you lay your hand upon me.
Such knowledge is too wonderful for me,
too lofty for me to attain.
Where can I go from your Spirit?
Where can I flee from your presence?
If I go up to the heavens, you are there;
if I make my bed in the depths, you are there.
If I rise on the wings of the dawn,
if I settle on the far side of the sea,
even there your hand will guide me,
your right hand will hold me fast.
If I say, “Surely the darkness will hide me
and the light become night around me,”
even the darkness will not be dark to you;
the night will shine like the day,
for darkness is as light to you.

“Send us Your light as we’re making our way through the dark.”

For you created my inmost being;
you knit me together in my mother’s womb.
I praise you because I am fearfully and wonderfully made;
your works are wonderful,
I know that full well.
My frame was not hidden from you
when I was made in the secret place,
when I was woven together in the depths of the earth.
Your eyes saw my unformed body;
all the days ordained for me were written in your book
before one of them came to be.
How precious to me are your thoughts, God!
How vast is the sum of them!
Were I to count them,
they would outnumber the grains of sand—
when I awake, I am still with you.

“All of the earlier troubles, chaos and pain they unravel”

He is God. We are not.

This afternoon we snuggled in the big bed and watched the movie Miracles From Heaven. There were so many similarities to our story. The mama bear fighting. The faithful daddy staying behind doing what needs to be done. The older sister who gets a little lost in the shuffle and sacrifices more than most know. The crushing cost of travel for care and out of network doctors. The lonely divide the physical distance creates between a community of support and hospital halls walked alone. The hurtful words from well meaning people about why this is happening or how just a little more faith might change the outcome. Once again my girl’s little hand found mine. She squeezed it at certain parts. Parts I knew she understood fully because she’s been there. She jerked it away to wipe the tears running down her cheeks. I asked her several times, “Is this too hard for you? Do you want me to turn it off?” She wanted to see it through. We hugged as the credits rolled. I didn’t need to tell her I was skeptical about visiting heaven and living to tell about it. I didn’t need to explain to her how against all odds God can decide to heal someone completely. She felt the power of the narrative, because she knows it to be true.

He is God. We are not.

Danica is sleeping next to me now as I peck away in the dark. She asked for the heating pad for her legs and the cold pack for her neck. Dan is gone working overtime all day and night. Delaney is at a bonfire with her girlfriends. I wandered back to the old Team Danica blog and read the posts from August, 2010. It’s unsettling how easily they could have been written this month, six years later. There is one glaring difference. We know for sure…

He is God. We are not.

We’ve seen His faithfulness in the land of the living. We’ve seen Him provide. We’ve seen Him make a way when there was no way. We’ve seen Him bind up our wounds and heal our broken hearts. We’ve seen Him preserve our marriage and our family. We’ve seen Him rescue us from the root of bitterness. We’ve seen Him shine through the darkest night. We’ve seen Him perform a real in the flesh miracle.

“Looking ahead we rejoice in You.”

He gives and He takes away. Blessed be the name of the Lord.

Danica, I believe this, my brave girl. I do. I want to mirror this to you. A thousand things are happening in this one thing.

He is God. We are not.

September 20th, 2009 we found out Danica had a Chiari malformation. Not knowing all that would mean, I wrote this:

Do I believe God makes no mistakes? Do I believe He lovingly formed this child’s skull and brain how we find it today to fulfill His purpose in her life and in ours? Do I believe we lack nothing God’s grace can’t give us including strength for today and the days ahead? My verse for this week has been Mark 9:24 “I do believe; help me overcome my unbelief.”

I’m afraid. I’m so very tired. I know that trusting God with my child is perhaps the hardest thing He will ask me to do. As He grows my faith and asks me to rest in His promises. I will fall. I will have moments of anger and confusion. I will want to quit and walk away.

Oswald Chambers wrote, “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.” Knowing a God who is unchanging and will do everything He says He will do is the only way I will navigate through the next weeks and months. I believe.

“You are my strength. You are my song. You are my salvation. You hold it all together. You hold it all together.”

Tonight. This song from All Sons and Daughters upcoming album Poets and Saints is on repeat. My heart melody. Part lament. Part praise. Yes.

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Listen. One Word. And a health update

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Monica S. One Word 2016 (1)

“Somewhere we know that without silence words lose their meaning, that without listening speaking no longer heals, that without distance closeness cannot cure.”–Henri Nouwen

A decade ago I worked in marketing management for a very large builder in the Washington DC area. There were many wonderful things about this company, but one of my favorites was the intentional way they encouraged employees and departments to set yearly goals and break them down in manageable ways to ensure we could meet or exceed them. Our yearly bonuses were partly tied to the accomplishing of these goals. I have carried their model into my personal life. Even with a mostly broken body and a calendar where best laid plans fall to the wayside for health emergencies and setbacks I have felt an empowered purpose through continuing this discipline.

Another way this company poured into building up those in management was evaluating our personality types to help us better understand ourselves and those we worked along side. We also participated in what are called 360 peer reviews. These are reviews from your bosses or people in lateral positions to your own and more importantly from those you manage. I have utilized this same idea less formally in my close friendships and relationships. I regularly ask my husband and children how I can be a better wife and mother. I ask them what they are missing or needing from me.

Most of my work reviews were very complimentary, but there was one specific comment from someone I will never forget. “Monica feels the need to be insightful on every topic.” In a corporate environment entrenched in a culture of meetings I often found myself around a huge boardroom table of mostly men discussing land development, zoning and big scale financial projections. I took notes. I tried to keep up. I also felt a pressure to add something to the discussion to validate my presence. I know for sure there were entire meetings I was just waiting for the opening to say something and missed the opportunity to just be there, listen and learn.

This is the fifth year I have chosen a word in January as a guiding focus for the twelve months to follow. I began this practice in 2012 directly following my first big brain surgery and fusion. My word was “Possibility.” In 2013 it was “Restore.” In 2014 it was “Play” and last year it was “Commit.”

2016’s word came to me early on. I began to understand God was calling me to a season of more quiet last fall. In early September I wrote to you about “going away” for awhile. Without the real or imagined pressure to continue to say something I began to understand my head and my heart were being flooded with an impossible number of images, memes and calls to action. My ministry of prayer and support to an ever growing number of people in my EDS and Chiari community was creating a compassion fatigue so real I could no longer decipher between my own suffering and that of the ones I was carrying so close to my heart. Social media was smothering me. The desire to read everything my new and growing group of writer friends were publishing on the screen or on paper became an ocean that pulled me under. I was also advised to be working on building a platform for my book. Every moment of self promotion felt wrong. As the book became a finished document needing a champion, an editor, a publisher and yes, realistically, an audience, I became less committed to it. The book is a hard fought chunk of my soul, painstakingly built as an offering, and I began to doubt it would or could matter in the tsunami of stories written and published. Was I wrong about Gauntlet all along? Did I misread God’s providential leading and what I thought were blatant nudges to write and publish? I ignored and pushed off emails of industry people pursuing me. I became more ill. I had a brain shunt revision in October, another long round of plasmapheresis in December and four weeks of intensive chemotherapy that ended last week. I didn’t want to talk about any of it. As Dani Shapiro so poignantly writes, “A Memoir is Not a Status Update.” As much as I felt a responsibility to all of you who have prayed and encouraged and donated for oh so long I began to realize the little blips of sharing here or there were merely drops in a very real ocean of pain I’d been dressing up as a beautiful fight for far too long. The battle cry “Our Hope Remains” lost meaning. What if the Gauntlet has more land mines than gifts, and I’ve been selling a lie I needed to tell myself to survive?

At the very core of all this angst was the truth I had become completely overcome by a cacophony of voices other than God’s. I had forgotten the world is not waiting with baited breath for my next words. There will be others to like and comment. There will even be others who will hand write a note or send a text to encourage. There will be others praying too. Beautiful stories of courage and hope will be written and published, and I might miss their launch. My dear friends will celebrate birthdays and lose loved ones. Without the Facebook scroll I might be too late to mail the card or send the flowers. Babies will be born, and I’ll not see the vernix covered miracle within minutes of it happening. I don’t need to weigh my life against the beautiful meal you made, the new bracelet you bought for the best cause or the inspiring quote or Bible verse that got you through your day. I needed to turn it all off, and I did.

My word for this year is “Listen.”

I am reading Adam S. McHugh’s new book The Listening Life: Embracing Attentiveness in a World of Distraction. I am reading slowly. I am reading well. I am blown away by the over 1500 times in the Bible God asks us to stop, be still, hear, pay attention, take heed and LISTEN to His words. I’m even more struck by the amazing Grace of His willingness and desire to listen to us. I know for sure this gift of intimate relationship with my Heavenly Father, my Savior and the Holy Spirit has been hijacked by even the good, better and best “noise” of this world.

I’ve said February 1st is my January 1st. I’ve given myself the freedom to just float. When we put away the Christmas decorations I left the majority of space empty in my home. I’m learning to be still with the quiet. I’ve re-tuned my heart to the hear Grace in the fount of many blessings. I’ve returned to the comforting disciplines of first things first. Sitting at the foot of the cross is where I’ll hear Him best. The Bible is open. This is where I know for sure He speaks. “You become a disciple by hearing…This is the pattern that life commands. Listen before you speak. Learn before you teach. Hear the call before you lead. Absorb the word before you preach it.”(10) If I could bow my head I would, instead He bends His ear to me. (Psalm 31:2; 86:1) I forgot. He wants to hear me too. I find myself “at the heart of the gospel mystery–that the heavenly King not only speaks but listens…”(35) My prayers have changed. I hear Christ’s voice in Mark 10 asking blind Bartimaeus, “What do you want me to do for you?” I don’t need to answer in a hurry. He knows already and still He wants to hear me ask in faith, believing. Beautiful Grace.

I will wear the word “Listen” for 365 days. I will write it on my doorposts. I will study it, and it will change me. I don’t know what this means for my book or my blog or Facebook, Twitter or Instagram except I will continue to be quiet for at least awhile longer. I’m resting. I’m waiting to hear and obey.

Do you have a word you want to claim for 2016? What do you want it to mean for your life in the coming weeks and months?

The image of my 2016 word was created by Traci Michele Little.

(Here is a quick health update: I finished four weeks of a very targeted chemotherapy drug called Rituxin following my latest round of plasmapheresis. I will have bloodwork next week to check levels. Our prayer is this drug will keep the infection that attacks my entire body, especially my brain and heart, away longer. The horrible pelvic pain and bleeding I was experiencing has completely subsided since treatment. I continue to have days of great pain, especially in my neck and spine. The winter is always hardest on my body. Thankfully my most recent shunt has been managing the changing pressures. Our financial stress grows with each new treatment and especially at the beginning of a new year when all our deductibles and out of pockets begin again. The total on my insurance explanation of benefits from December 7th through January 7th was $67,000. When we are tempted to despair we are brought back again and again to God’s faithfulness. Dayenu. Enough. Please pray for our Danica who has been complaining of frequent leg pain. Over spring break we will spend several days in Cincinnati at the Children’s hospital to have scans and see neurosurgery and orthopedic surgery. As she grows we will see how her body sustains the experimental hardware used in her fusion and watch her lower spine curvature. We are ever grateful for your prayers and especially the faithful ones who remember even when I have stopped sharing out loud. We live in a shelter built by years of love, sacrifice and generosity. Thank you.)

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If I Leave? Why I’m Going Away

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I’m sitting here in bed with a blinking cursor pushing me to keep adding words to this sentence, this paragraph and this post. I have six windows open on my laptop. My email, Facebook, Twitter, Pinterest, Instagram and WordPress are all places I share community. They are good. The relationships I’ve made and sustained on the web keep me from feeling isolated in my mostly home bound life. I connect with beautiful TRUTH here. I learn your stories. I watch your lives unfold for the glory of God. I share in your pain and struggles, and I pray for you. I celebrate your victories and accomplishments. I also channel my online life into real life with paper to pen, care packages and, if you live close enough, by inviting you to rest awhile on my yellow sofa to know and be known by me. I schedule phone dates with far away friends and even strangers who need pieces of my story to take the next step in their own. When I am not doing these things I am managing my own health care, wrestling with insurance and debt collectors and getting treatment. These things fill my days until my children and husband come home. I try to pour into them what I have left which is often the least of me. Every night I swallow five crazy pills supposed to slow down my brain and my body enough to rest, but I fall into bed with a racing mind and bursting heart. I make lists in my head or on scratch paper on my nightstand in the dark. I am overwhelmed by all the people I need to pray for. I am wanting to remember your birthday or send you a note of encouragement, because it might be the only real mail you get in your hard this week. My life is full because of this screen. I am grateful for it. I also know it is time to step away.

Something bred out of this culture of continuous sharing is the absolute inability to believe the world can and will go on without our input. We don’t know how to do real retreat. We don’t know how to stop the whispering or the shouting long enough to decide who and what we really are without it. I see this as blatantly in the Christian community as I do in secular media. Those of us who write are particularly prone to feeling we must keep our words out here. Isn’t that why God gave us the gift? I have been blogging since 2008, and it has been one of the most beautiful and challenging things I’ve done in my life. I’ve told truth here I would have never been brave enough to bare in any other place. This has wrecked me and healed me. The hundreds of people from around the globe who joined our Team Danica journey encouraged me to know people are hungry for community, and we are all more the same than we are different. My blog and social media gathered an army of prayer warriors for us. It became a place we humbly made our great need known and where God chose to meet much of it. I am grateful for it. I also know it is time to step away.

My heart aches to have been writing and submitting a book for publication before all this. I wish I could tell my story, birth it and give it away. No build up. No platform. No marketing plan or commerce. Just a year and a half of heart work poured onto pages. God, do with them what you will. Take my name off. He is the author. I am merely a character in this narrative of redemption. I’ve been told I am naive. I’ve been asked if this desire is driven by fear of failure. I’ve been asked if I want to be a writer or if I just have this one amazing miraculous tale to tell. Publishers don’t just want one good book. They want to know if you have another and are worth the investment they make in you. I wrestle with the deep threads of faith in my book making it a book only Christians will buy. Do I really want to shine my light into an already lit room. If not, do I pull a few golden stitches out and hope the Jesus shines through the strength of the story itself? I’m asked to focus on my target audience. Is it people who have suffered and are suffering? Is it my ever growing community of EDS and Chiari people who hurt exactly like I do? Or is this a story about finding gifts no matter what your gauntlet making it a book for almost anyone, because none of us are immune to the struggle?

If you’ve been reading here you know I had my twentieth surgery and seventh neurosurgery on June 24th. I never wanted this “new” blog to be focused on my continued pain, treatment or disability and especially not about our ever growing need for support. This is why I’ve been very quiet. Here’s the rub. This is my life. I spent the first eight weeks of my recovery without words. It scared me. I cried more than I have ever cried in my life, sometimes hours at a time. The loss of range of motion in my neck and the new normal I was facing terrified me. The pain from having skin and muscle and nerve cut down my head and spine for the third time in the same place was driving me into despair. I wanted to quit, and I felt the story I’ve labored over was a farce, because I couldn’t see a gift anywhere. At the bottom of the valley I had my finger on “delete.” God stopped me.

I cannot answer many of the questions I’ve asked above. I do know God is asking me to be quiet, pull away from ALL this here and focus completely on what I know for sure He called me to do. This means saying no to people in all kinds of ways. This means my children and husband will lose even more of me as I set my jaw like flint to finish this work. This means I have to believe my presence in your life on this screen is not necessary for a period of time and trust God to bring you other encouragement. This means I’m asking you to respect the absence but promise me you will be here when I return, because I will miss you all, and I need you too.

I remember a poem written by L.L. Barkat in her precious book “God in the Yard.” I found it quickly tonight as I pulled my well worn copy from the shelf. I had forgotten she wrote it for Ann Voskamp. I wondered if Ann was feeling these same struggles as she poured herself into her first book. I will leave you with it tonight.

Stayed: for Ann Voskamp

Why do we not
leave home.
Is it really for fear
of what lies
beyond, or rather
for fear that the
roof will abscond
with the doors
and the shutters
we’ve always known.
And who would they
blame if it happened
just so, if the whole
curtained place simply
picked up its stakes,
disappeared on the wind
in our absence. What
are we really afraid
of, why do we not
leave home.

I will be gone literally as much as figuratively over the next two months. I leave a week from today for a trip to Maryland for a scan and fusion check up with my neurosurgeon. I plan to head further south to the Virginia valley I love between the Blue Ridge to see my Angie after this. God has provided for me to take an overnight trip with dear girlfriends, a very long weekend at the beach with one of my most faithful five and an entire week of writing on Lake Michigan as I finish out my thirty-ninth year of life. Will you please pray for me physically as I continue to heal and learn how to live once again with new challenges? Will you please pray for the decisions I have to make about further PANDAS/AE treatment? I have decided not to continue chemo or add long term steroids, the next suggested steps from my physician, until my symptoms become unbearable and dangerous again. Will you please pray for God to provide for our family as He always has and for us to live this manna life with great joy. Will you pray over the words I am committing to write as I finish “Gauntlet with a Gift” and for God to make clear the path where it should land for His glory? I humbly thank you for taking these things to our God who already knows what we need and still beautifully invites us to enter in by asking.

(I will continue to publish Thursday’s Gauntlet Story Feast here, because your stories are important and are one of the main reasons the book was conceived. I have made commitments to several author friends to help launch and promote their own soul work, and I will be showing up, because their books are changing me, and I want you to read them and be changed too. Besides these things I will be quiet. If you truly need me I will check email and messenger daily.)

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How Can I Go On Like This? Abide With Me

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“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.

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Gauntlet Story Feast

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GauntletStoryFeast

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.

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Personal Retreat as Spiritual Discipline

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“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

Hands

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.

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Broken in Aspen. Again

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Aspen

One hundred thirty-nine days since my last surgery.

Seventy-two days since my last plasmapheresis treatment.

Just like that. It happens. I fall in love with life again. I make plans. I start to reclaim lost pieces of being the wife and mother I want to be. I slowly fill my calendar with seeing friends and family. I make appointments for normal things I’ve neglected like taking Twix to the vet and getting the girls and I to the dentist. I reschedule overdue things I’ve cancelled again and again like my bone scan and mammogram. I push off appointments that might throw gasoline on even an ember of the need for more medical intervention. I move my Dr. Henderson appointment to check fusion to the end of April. I call Danica’s orthopedic surgeon and get permission to move her big scan and evaluation from this month until October which will be her five year mark. I book a beach house for the last week of May, because we haven’t been since 2009, and it matters more than just about anything to our family. I buy summer concert tickets on the lawn at Blossom for Dan and I. I book a hotel and make plans with my girlfriends to go to The Country Living Fair in September.

Two years ago I made a list of 40 things I wanted to do before I turn 40 in November.

This is the year. I’m sure of it.

I’ve been waiting for today. The temperatures are rising. The snow is melting enough I can see patches of earth. The sun is shining. I made it through a brutal winter without a shunt revision. I’ve had the most days out of bed and without a headache. I’ve allowed myself to dream. I have fourteen chapters of the book written. I’ve let little inklings of what God might have me do after “Gauntlet” sneak out to people I trust with my hopes. I’ve let my girls and my husband hear me talking about possibilities again.

This is definitely the year.

Without warning something snaps.

I should be used to it by now. The surgery or treatment that eases some kind of pain or symptoms lulls me into thinking maybe this will be the one that changes my body for good. Everything I know about Ehlers-Danlos and all the other conditions it drags along with it flies in the face of this ludicrous optimism. Still, without it I would have given up long ago.

When the popping and neck pain began in Tucson I explained it away as plane rides, hotel pillows and the strain of showering, shaving my legs and styling my hair every day. I returned to insanely cold weather and pressure systems. It was crushing me, but some kind of high from our vacation kept nudging me out of bed and moving forward. My inner voice told me to lay off the treadmill, let someone else clean my house and have Dan carry the groceries. I naively thought if I didn’t do anything stupid I would get through this.

It’s not just my spine slipping. It’s everything all at once. My mast cell reactions are getting closer together and more severe. I went to a friend’s birthday party Friday night and the candles made me so ill I spent all Saturday in the bathroom like I had the stomach flu. My cardiac symptoms and POTS, so controlled in Arizona I actually had days I did not take my medications, are flared again. When I stand up I get dizzy and feel my blood pressure drop and my feet turn dark purple. My heart literally hurts. My joints are screaming and the pulling between my shoulder blades is like the craziest tug of war burn. My headaches are from all over. The ones from my neck and base of my skull buzz all the way to the top of my head. The pressure is like someone is blowing into a balloon that will explode with one more puff. My hearing goes out if I move my head to the right or left or bend over. I am twitching again. It’s like little electrical impulses randomly shocking me. It is all a vicious cycle.

I’ve been faking it some. I’ve been hinting to those closest to me something is definitely wrong, but the tan is a little deceiving, and I love people who have invested so much in my fight to be more well actually thinking I really am more well. I have been driving even though it hurts me more than almost anything else. I also spent almost twenty-four hours this past weekend on my laptop working on the book. I was sick, and I could not sleep so I kept working. The emotions I uncovered during the chapters I wrote were overwhelming. When I returned home Monday I broke down. I told Dan the truth. I cried. I raged. When it was all said and done Dan rolled over into the fetal position, and I tried to pray.

Last night Dan came home, and I was already in bed. By eight o’clock he was beside me. I pitched another fit. I cried. I raged. Dan reached out his hand to hold my snotty one. We prayed. “God, please, just make it stop. We know You could make this stop.”

Today I cancelled my counseling appointment so I wouldn’t have to drive. I stayed off the computer except to go back and read the chapters I wrote over the weekend. I took Valium for my spasms. (I refuse to take a pain pill, because that is one step down a road I can’t admit we are on yet.) I prayed in fits and starts. How could I have so much faith and so much hope through so many years of suffering and then dig my heels in at this new development?

I’m not speaking much truth tonight.
I’m in stage one.
I’m sad.
I’m mad.
I’m desperate.

I put on my Aspen collar this morning to try and stabilize my neck.
I passed myself in the mirror, and it took my breath away.
I am broken.
Again.

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Drain it. Kingdom Giving. Kingdom Living

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Money

I do not believe one can settle how much we ought to give [to others and to charity]. I am afraid the only safe rule is to give more than we can spare. In other words, if our expenditures on comforts, luxuries, amusements, etc., is up to the standard common among those with the same income as our own, we are probably giving away too little. If our charities do not at all pinch or hamper us, I should say they are too small. There ought to be things we should like to do and cannot do because our charities expenditure excludes them.–C.S. Lewis

It’s a recurring theme over the past few years and telling the specific stories never gets any easier. No matter how many times I try I can’t seem to write about them eloquently. I want to tell them again and again, because they all point to God and His faithfulness. The acts of “charity” to our family have given us the very manna to stay alive and move forward each day. I want to show my gratitude without using the same overused words. I want to give God ALL the glory, and in my weakness I don’t really know how to shine all this on Him.

This is one of my favorite stories of generosity and provision.

The week before we headed to Maryland for my first brain surgery and fusion we had scraped together enough for a fifth of the down payment my surgeon was asking for through my parents and several other gifts. We had several hundred dollars in our checking account for gas and food while we were gone. I had this crazy peace God was going to come through for us. The week wore on, and I began to pack my bags and get a little nervous. I knew our support system was worn thin from the past couple of years and a woman who always had a headache and could barely walk but looked fine for all intents and purposes was not the most engaging fundraising idea especially compared to Danica’s adorable face.

I was in bed in my oh so dark bedroom curled up in a ball with the weight of the world crushing my brain, head and neck. I wondered if I would even make it to my surgery date. This sounds dramatic unless you really understand how dangerous my situation was. My dad opened the door at the top of the stairs and threw down a letter. It was from a girl who lives in Virginia who I used to work with. I had only met her twice because I telecommuted states away. Over the past months she had begun to faithfully pray for me and encourage me through facebook and email. I opened the card and a check folded in half fell out. I read the note first. She wrote how she couldn’t sleep because she was praying about a way her family could help us. She said in the night she heard God tell her clearly to “DRAIN IT.” She obeyed. I looked at the check. It was a strange number. I found out later it was every penny this family had in their checking account. It was just shy of what we needed to pay the entire deposit. I was shaking. How in the world could someone give like this? This family was not wealthy. This friend works from home with two small children just to make ends meet. I immediately knew God was completely behind my surgery. He had funded it through the most unlikely of places.

It took me awhile before I could finally find a few words to call this friend. I was even more blessed by her back story to the giving. She shared her own fear of not having enough and God’s work in her life to put her treasure where she says her heart belongs. She talked about how she had telephoned her husband the morning after her prayer, and he too had to commit this huge gift to the Lord before the check she had already written could go in the mail. (Ladies, can you imagine calling your husband and telling him God told you in the night to empty your checking account?) She told me how over the last two quarters they had paid all their credit card debt off by careful spending and holding back some tithe. When the card balances were at zero they didn’t up their tithe. She later realized what they sent us was almost exactly the amount they had kept back. God already had this provision planned long before either of us knew we would be part of it.

God says in 2 Corinthians 9:6-7, “Remember this: Whoever sows sparingly will also reap sparingly, and whoever sows generously will also reap generously. Each of you should give what you have decided in your heart to give, not reluctantly or under compulsion, for God loves a cheerful giver.”

I’ve had nine surgeries since that extravagant gift in 2011. God has always provided just enough through the kindness and generosity of many who have come along side us in this journey.

I will never look at tithing the same way again.
This is Kingdom giving.
This is Kingdom living.
Soli Deo gloria.

Photography by Cindee Snider Re. Used with permission.

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