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Begin. One Word. A Team Monica Update

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BeginAgain
“Always we begin again.”–St. Benedict

I bought the beautiful hardback book “Every Day Sacred: A Woman’s Journey Home” by Sue Bender in January, 1996 at a Walden Books at the Valley Mall in Harrisonburg, Virginia. The simple rendering of the empty red bowl on the cover drew me in. My life was out of control. I was lost in my faith. Nothing seemed sacred anymore. As I flipped through the pages I saw lots of white space, rudimentary illustrations sketched in black and only a few words. I realize now that my life word, Dayenu, was being planted way back then. In Sue’s introduction she spoke of a begging bowl,

“All I knew about a begging bowl was that each day a monk goes out with an empty bowl in his hands. Whatever is placed in the bowl will be his nourishment for the day.

I didn’t know if I was the monk or the bowl or the things that would fill the bowl, or all three, but I trusted the words and the images completely.

At that moment I felt most like the empty bowl, waiting to be filled.”

BeggingBowl

Sue’s book became a treasure I’ve carried with me everywhere. There were more than a few times I could fit everything I owned into my powder blue two door Chevy Cavalier marked with the Grateful Dead dancing bears sticker on the back windshield. Somehow my Bible and this book were never lost in the fray of my vagabond life.

If you visit my home you will see little bowls everywhere. Some are sitting empty. Some hold a rock and a feather, a small cross or piece of sea glass. They are not all displayed at once. I rotate them in my decor. They tell a kind of story. In late November, 2003, the night before my brother Neculai died, I painted a rather large bowl at a pottery studio with my mom. I scratched the date and my initials on the bottom. It’s now a deeply emotional space. I brought it out on my kitchen counter the week of Thanksgiving, a holiday that will always be tempered by sudden loss. Every time I’ve passed it since returning from Danica’s surgery in Baltimore I get a lump in my throat. I knew my word for 2017 was somewhere in the hollow of the simple blue glaze.

Since my own complicated fusion in October I’ve been the monk begging, the empty bowl waiting to be filled and the sacrifice filling the bowl for someone else.

I first heard the poem “The Singing Bowl” by Malcolm Guite at the opening of The High Calling retreat at Laity Lodge in November, 2014. I scribbled down the words in my blank Moleskine. Later that night in the silence of my room I read them over again and again. Each stanza was emptying my heart for every sacred thing I would receive in that hallowed place. There was no internet access in our rooms. I desperately wanted to google Malcolm and find his work. Sitting quietly with the scrawled letters in my own handwriting was gift. Before every session that weekend I opened my green notebook and read them again. Waiting at the San Antonio airport a few days later, finally with Wi-Fi, I found his book of poetry by the same title and ordered it.

Begin the song exactly where you are,
Remain within the world of which you’re made.
Call nothing common in the earth or air,

Accept it all and let it be for good.
Start with the very breath you breathe in now,
This moment’s pulse, this rhythm in your blood

And listen to it, ringing soft and low.
Stay with the music, words will come in time.
Slow down your breathing. Keep it deep and slow.

Become an open singing-bowl, whose chime
Is richness rising out of emptiness,
And timelessness resounding into time.

And when the heart is full of quietness
Begin the song exactly where you are.

My word for 2017:
BEGIN.

DesertSun

God made a way for me to take a solitary trip to Tucson last week. It was something I’d prayed for and desperately needed. In this world of constant sharing I wanted to keep it quietly tucked inside my hurting heart. It was everything I’d hoped and more. After spiritual famine and astigmatism I could taste and see good again. Tuesday morning I sat at the airport waiting to return home with absolutely no pain. Zero. No headache. No neck pain. No joint pain. No cardiac symptoms. No burning and stabbing needles in my feet. No mast cell attacks sitting near people with all kinds of scents. I was well. I filled my journal pages with gratitude for the body and spirit healing. I wrote about the things I long to do in this new year, specifically a dream I’ve had for some time to host a retreat for young zebra women in Arizona. I want to offer them respite from their medical lives, encouragement in community together and a few days of knowing there is a beautiful place where they could feel some better. I made important contacts and explored locations moving the idea into real planning. I was hopeful and excited.

ZonaMKS

My travel home included flights from Tucson to Chicago and then on to Akron/Canton. A little over two hours into the first flight the captain alerted us there were extreme storms around Chicago and no flights were being allowed to land so we would hang out at a high elevation circling above Nebraska and Iowa and hope things improved. An hour later he let us know we would have a very uncomfortable landing in Milwaukee through turbulent weather. It was during this descent and pressure change I experienced an ice pick pain in the right side of my head, loss of hearing in my right ear and fluid leaking from it. We sat on the plane in Milwaukee waiting for some kind of small window in the Doppler radar to make it into Chicago. Almost all of us on a large packed flight were making connections there. Suddenly we were ascending quickly and descending again through lightning and pouring rain at O’Hare. The airport was in total chaos. Every passenger needed to be booked on new flights for the next day. I stumbled off the jet way and began to cry.

With each new surgery I’ve been increasingly afraid to do things alone. I had to work through this doubt before I committed to the Arizona trip. I’ve felt more and more of myself being swallowed by disability. I’ve found myself resenting my broken body as an enemy instead of caring for it as a temple of the Holy Spirit. I used to be a seasoned solo traveler. In the past I’d have been frustrated by the inconvenience of an unplanned night in Chicago, but I would have jumped on the Marriott app and found a room, hailed a taxi and adjusted my sails. Instead, I felt like a lost and injured child. It wasn’t just the circumstances upsetting me. I was instantly questioning my theology and belief in everything I’d just been grateful for. Thousands of people were being affected by the weather. Of course God was doing things providentially in many hearts and lives through this maddening detour. My myopic view left me sobbing in a wheelchair by the baggage claim holding the howling shunt side of my head in my hands.

The first time I ever spoke of the desire to host a zebra retreat was with my friend Christy who lives just outside Chicago. I knew her from Chiari and EDS support groups on Facebook for several years before she went out of her way on a particularly difficult day of her own tests and appointments in Maryland to visit me during a long and lonely hospitalization for my initial AE/PANS/PANDAS treatment. We are kindred. Since meeting three years ago we have written many #pentopaper cards and notes and letters, emailed, texted and talked on the phone. Both our lives are impossibly knotted. We’ve longed to see one another again face to face, but it’s never happened. Tuesday night I texted her without hesitation, and she jumped at the strange and stressful opportunity to show me hospitality. She arranged for a car to pick me up and came out to the driveway to greet the mess that I was with an umbrella and a smile. It was late. Her husband and girls were in bed. She was reeling from a challenging and emotional week away for invasive diagnostic tests in Georgia. Everything about me showing up in the middle of the night was inconvenient. Sitting across the table in her warm and cozy kitchen with a cup of hot tea sharing hearts for hours…falling into the most comfortable guest bed with silky linens and perfectly plump pillows…waking to her beautiful face shining Jesus the next morning was God giving me a glimpse of His purpose for this detour in my life.

Since returning home Wednesday afternoon I’ve continued to experience intense intracranial pressure. Other symptoms that accompany this pain are also constant. My amazing miracle VP brain shunt is not working properly. Tomorrow my dad will drive me to Charlottesville, Virginia for a Monday scan and appointment with the University of Virginia vascular neurosurgeon who placed my shunt last April. I am undone. I begged God for a year without surgery. It was difficult to leave my family for the time in Arizona. Leaving them tomorrow is crushing. We are so close to Danica’s trip back to Baltimore to see her fusion and meet with her neurosurgeon. I don’t understand.

The rule of St. Benedict, “Always we begin again,” reminds me of fresh starts in Jesus. It invites a trust for my daily bread and the strength and Grace to move through time and space with exactly what is given to me. It encourages me in my Dayenu life of always enough. Chronic illness and daily suffering have a way of emptying over and over. Rising each morning asking God what He wants to do through this brokenness is a part of healing but never being healed. I am a beggar, aware of my need and completely dependent on His love. My life is an offering.

I can’t tell you what new thing He is doing in this pain, but I believe. I have to believe.

“‘Don’t be afraid, I’ve redeemed you. I’ve called your name. You’re mine. When you’re in over your head, I’ll be there with you. When you’re in rough waters, you will not go down. When you’re between a rock and a hard place, it won’t be a dead end. Because I am God, your personal God, your Savior. I paid a huge price for you’…This is what God says,…’Forget about what’s happened; don’t keep going over old history. Be alert, be present. I’m about to do something brand-new. It’s bursting out! Don’t you see it? There it is! I’m making a road through the desert, rivers in the badlands.'”–Isaiah 43:1-3, 18-19, The Message

This is my heart song tonight. Soli Deo Gloria.

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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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One Word

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Monica Snyder One Word Large

“Commit your way to the Lord, Trust also in Him, and He shall bring it to pass.” Psalm 37:5

“Commit your work to the Lord, and your plans will be established.” Proverbs 16:3

For many years I have done away with resolutions and carefully chosen a word to represent my heart’s desires for the new year. I use this word by displaying it on a banner in my home. I wear a necklace with the word around my neck. I collage it on a big vision board I use as a desk mat for that year. I pray over it for 365 days and each month set an attainable goal to lean in to the spirit of the word.

Because of chronic illness and sudden setbacks including treatment and surgeries I cannot make plans like most of you do. Even when I try they are mostly thwarted and cause for disappointment. This leaves me in a day to day dependence on God I’ve come to recognize as gift even when it is painful to unwrap.

In the first weeks of January last year I sat across from my counselor in sadness. I had a shunt placed just months before to try to relieve the unbearable intracranial pressure that rendered me completely unable to get out of bed most days. It was the worst winter in decades. The bitter cold and constantly changing weather systems were crushing my body and brain. My counselor advised me to plan a trip away. Even though I couldn’t see how this would happen financially or physically I knew more than any kind of medical treatment I needed a reprieve. I needed a retreat. With my dear sister-in-law Amy on board with her Marriott rate and help from others close to me who knew I might not make it through the winter without this, I planned a trip to Tuscon, Arizona.

My word for 2014 was “PLAY”. This was my first attempt to lean in and claim something I had prayed would make real change in my mind, body and heart. The trip was planned. Then my shunt failed. A week before I was to fly to Arizona I was back in Maryland for surgery to have my shunt replaced. It snowed so heavily even the hospitals shut down, and my surgery was pushed while Janet and I holed up in a Courtyard in Gaithersburg. A week later I took a wheelchair ride to the gate at our local airport having determined not to let this trip slip away no matter what.

The time in Tuscon healed years of suffering. It was nothing short of a miracle. Not only did I become the most well I had been in years but almost every physical symptom vanished. Even with the fresh incision, a second cut in the same place to insert the shunt, I hiked in the Sonoran desert. I took long walks every day. I woke early to meditate. I had a lymph cleansing. I ate healthy food. I soaked in Vitamin D in the sunshine for hours each day. I sat on the patio each evening watching the stars appear. I didn’t need or want to sleep because I was PLAYING. When I did finally crawl into bed I didn’t need the fist full of pills to drug me into rest. I slept because I had LIVED.

While in Tuscon I revisited the call to write Gauntlet with a Gift. I took a suitcase of real books. I read five while I was there, none more profound than Bret Lott’s Letters and Life: On Being a Writer, On Being a Christian. I have read many books by writers on writing. Nothing comes close to this beautiful memoir of his approach to telling stories with the foundation of faith.

In the first chapter He tells of writing the above verse from Proverbs on a yellow sticky note before he wrote his first book.

“Commit your work to the Lord, and your plans will be established.” Proverbs 16:3

Twenty-one years later he still has it taped to wall above his desk. I kept reading it over and over. It planted a seed in me that would be choked and burnt in weeks after from more suffering but not destroyed. Two months after Tuscon I was back in Maryland for twelve days of hospitalization and treatment. It was during this time God brought a virtual friend who lived in Chicago to my room to tell me I had to obey God. I had to write this story. It was the care I needed for the seed to finally germinate and grow. I returned home and began writing in earnest.

The word “COMMIT” used in both Psalm 37:5 and Proverbs 16:3 is the Hebrew word “gol” from the root “galal” which means to “roll away” or “heap.” This means to trust or commit with the connotation of rolling away one’s trouble away from one’s self to someone who can help. As we commit (galal) our way to the Lord we are rolling away things that compose our daily lives to Him. When we trust in His love we “roll away” the burden of our lives to His care and our thoughts will be established. Only then can we freely enjoy the knowing God is directing our way (Psalm 37:23. Psalm 90:17, Proverbs 16:9)

This year I long to roll away the very real things that have held me back from finishing this book. I am giving every effort and every word to Him. I trust Him. I trust His providential call. I trust His provision to establish these plans and bring them to pass.

This year I “COMMIT.”

Do you have a word you want to claim for 2015? What do you want it to mean for your life in the coming weeks and months?

The image of my 2015 word was created by Traci Michele Little.

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Just Show Up. Part One. A Team Danica-Monica Update

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Galveston angel
“Nurturing friendships is hard enough when everyone is healthy. But when you show up and do the work of being a friend to someone who is suffering, it will cost you something. In other words, you’re going to have to sacrifice your comfort, your schedule and maybe even aspects of your faith.”–Kara Tippetts

We are three days in, and it’s already been a week of hard. Monday I had my stitches removed. If you are a facebook friend I’m sure you cringed at my “over sharing” photo. (Please remember that at least half my “friends” are people who are walking through similar surgeries and recoveries. We celebrate healing no matter how gnarly, and our wounds are truly the places where light filters to our souls.) During the same visit Danica had her pre-op labs drawn and other tests for screening. Her last needle experience in Cincinnati was brutal with several failed IV attempts for a CT with contrast. She was anxious. As much as we talked about how this blood draw was a quick stick with no straw and a much smaller needle she lost her courage when it came time. Both of us showed our needle PTSD. It was ugly. It took the doctor, two nurses and myself to hold her down to try to get a stick, but she jerked, and we missed. She was sobbing. I was sobbing. I left the room for a minute to tell God He got this all wrong. “I CAN’T WATCH HER SUFFER AGAIN.” I was really thinking how impossible this was going to be. We are headed for brain and spinal surgery, and we can’t get through a needle stick. I came back in and moved from the completely understanding and comforting ally to get tougher on her. We had to get through this. We switched to the other arm, held her at four corners, and I began to pray over her. “Jesus, Calm Danica’s heart. Help us stick this vein.” We got it. On our way out our dear doctor hugged us both. She knows how fragile I am from my recent surgery. She’s walked the long road with me for over six years. She knows how impossible all this seems, especially right now. Her hug validated all those things and then said, “You can do this!”

Afterward my dad took us to Chic-fil-A and then to Danica’s special hair appointment where she had the underneath of her head shaved and a purple stripe added for Chiari. It was sad and fun all at the same time. Every step makes November 30th more real. We are all feeling the weight of it.

I had my every six week maintenance chemo drip yesterday. It was painful to sit in the chair for over eight hours with my neck in such spasm. By mid bag I begin to feel oh so sick and the deep bone ache began from the inside out. Last night I was exhausted but could not sleep because of the steroids, the hurt and how sick my tummy gets. I was up and down, up and down…finally I gave up trying to rest. Around 4 am I slipped out to the cold, dark living room and picked up the book “Just Show Up: The Dance of Walking Through Suffering Together” by dear Kara Tippetts and her friend Jill Lynn Buteyn. My friend Kristin had given it to me in January of this year. At the time I skimmed and shelved it. I brought it out to read at chemo but didn’t have the energy. I finally read it cover to cover this morning with a pen and a highlighter. I got out old school college ruled notebook paper and wrote Kristin a long letter stained with some tears.

Kristin and I

Kristin is my friend from Denver who first loved us when she heard God telling her to “Drain it.” (If you’ve never heard this story before you’ve got to read it!) We worked remotely for the same company based in Northern Virginia. I’d only briefly met her twice face to face when I’d traveled to Virginia for work functions and a third time when she came to visit me after one of my surgeries in Maryland before she moved to Colorado. I often say we are the least likely of friends. We are different in many ways. All my life I’d found friends who were almost mirror images of myself. This was someone I could learn from in a whole new way. We became close. She became the person who made me laugh out loud when no one else could. She allowed just enough whining before kicking my butt with the perfect amount of tough love. Even though we live very far from one another she has consistently found ways to “show up” for my family and I. Last October we took a very special girl’s trip to Galveston, TX to celebrate me turing forty. It was the first time we’d spent quality time together in the flesh. We shared hearts. I learned more about her walks with a former fiance’ and her dad who both fought and lost cancer wars. I understood more about how she knew what so many people simply can’t when it comes to loving someone in chronic suffering. When I found out about my emergency surgery she immediately called and said she was coming. She flew to spend a week with me in the hotel after my hospital discharge. It wasn’t easy for her to find care for her children or for her husband to handle all the details while she was gone. He told her “Go be the hands and feet.” (Seriously, this guy lets her obey God and “drain it” and now this. Corey, you are Jesus in skin.)

Kristin hasn’t been feeling well for some time. It’s strange how long and hard we have to look to find what becomes glaring when it’s finally seen. I hugged her in the parking lot of the Dulles Virginia Residence Inn on October 28th as the sun began to rise. She flew home and went to a doctor’s appointment on Monday to explore a lump. Two days later she had a CT that screamed malignant tumor. A week later she had a biopsy that named it. She has cancer. Big cancer. I checked flights to Denver. I wanted to go so badly, if only to ring her doorbell and hug her again. Neck healing be damned. I should have hugged her harder and longer.

This giving and receiving thing still seems so complicated to me. I’m proud. After all this time, I still really want to become independent again. I want to pay all our debt on our own merit. I want to go back to work and save the day. I want to disappear off this screen and be a person who shows up in flesh and blood for others. I want to bring you dinner, or clean your bathroom or fly across the United States to care for you post-op. But I can barely put my own socks on. I can’t drive now and maybe never will again. I’m disabled in all the ways I think the world needs me…in all the ways you, my friends and family, need me. I’m humbled over and over again. I even fight it with my own parents. I fight it with my husband and my children. They see me wincing through a smile. They see me faking it but hear me saying I’m not. I want to find my worth again in their lives too. Everything in this world screams this is by doing. What if you can’t do? What if you can only be?

Like Kara Tippetts I’d like to be known as a “keeper and grower of friendships, a tender nurturer of those around” me even in my suffering. Stripped of all the trappings of what I do for a living, where I live, what I wear or plans for any future I am left with a worn chair in the corner of a living room where I sit and read and write and pray. I pray circles. I mail words. I pray circles. I’d like to believe this is a kind of showing up too…a kind of giving. I’d like to believe BEING in Jesus really is enough. There’s my word again. Dayenu. More than enough.

Kara was dying as she finished writing “Just Show Up.” The way she lived and died impacted the hearts and lives of thousands and thousands of people because she wasn’t afraid of the one thing that remains when everything else falls away. She wasn’t afraid of community. She wasn’t afraid to give and receive. Some of her last written words were these:

“Friends, Community. It is the only way to know and be known. It’s where we see our own humanity and frailty, our gifts and our weaknesses. When we show up for one another, we invade each other in love and become witnesses to the truth that trials and sickness and pain are not the whole story. There’s more. So much more. We can remind one another that our lives are not a mistake. And, most importantly, that we are loved with an everlasting love.”

I’m four weeks out from surgery today. Two weeks away from my baby girl’s huge operation. I am healing slowly. Anything I do jeopardizes what we just tried to accomplish. This surgery can’t be repeated. It HAS to be the last time inside my cervical spine. I HAVE to find a way to ask for and receive specific help. I spent a lot of time in bed on heat after Dan and the girls left for work and school. Chemo recovery day is hard. I still had many phone calls and follow ups to accomplish. And my lists of things to do in the next week and a half before we leave for Baltimore seemed to grow longer not shorter. Around 1 pm I got up to make my family their favorite chicken casserole. It sounds simple, right? I reached down for the large Corning Ware dish. I reached down for the heavy Calphalon pan to boil the water for the stuffing. I bent over to put the chicken in the big pan in the oven. I reached up to get a mixing bowl for the sour cream and soup mixture. I leaned back down to get the chicken out of the oven and then cut it in little pieces. I lifted the large bowl to dump the ingredients and mix them. I lifted the stuffing pan and my wrist slipped out of joint as I scattered the stuffing on top. What if this one meal…this one personal act of love and assertion of independence ruined something? My neck was screaming. Now there were dirty dishes. The dishwasher was full and clean. This is rare. Usually Dan runs it each night and empties it each morning. I have no business reaching in and out of a dishwasher ever. But I did. Doesn’t a sink full of dirty pots and pans and a full dishwasher negate the encouragement I was trying to give by making the meal? So I emptied it.

My girls came home. Danica had homework to make up from Monday. She had a lovely gift bag from a teacher at school. We went through the things. Of course I needed to find a journal to begin a list of gratitude. The mail came. There was a box from my dear friend in Wisconsin with things for Danica. We went through the things. My body was howling, but I kept a cheerful face and spirit for my girl. We added the gifts to the gratitude journal. I took the cardboard to the recycling bin in the garage and sat down to wail.

I need help. We need help. I’ve pushed your offers away, because I wanted to do these weeks cozied here as a family. I did work on a list of specific ways you can help during and after Danica’s surgery, but I kind’ve wanted to keep you out of this part. It’s ugly. I’m ugly. I’m in full on lament. I realized this afternoon I cannot even pack for this kind of trip. I need help.

I got on my knees and with no head bowing ever again I prayed for God to help me ask and receive. I begged Him to help me be honest and detailed about how others can help and trust Him to fill the slots.

The next post will be this ask. Humbly, I will ask you to “just show up.”

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Undone. Treatment Again. And a giveaway

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Trauma

I began reading Michele Cushatt’s Undone: A Story of Making Peace With an Unexpected Life at the beginning of a challenging week. You may have noticed quotes from her book on the graphics for recent posts about our new Thursday community called Gauntlet Story Feast. I finished reading it yesterday while waiting at the hospital. Michele’s narrative is full of truth spoken into my mind and heart at a time when the lies seem much louder and more believable.

Her story is completely different from my own. It involves ministry, divorce, remarriage with a blended family, foster children and recurring mouth cancer. Still, there are quotes at the beginning of each chapter that I have woven into my own tapestry of faith over the years. Most of the Scripture she shares are verses and passages I have scribbled on index cards, in journals and highlighted and bookmarked in my tattered Bible. There are moments she bares her soul in such a way I can literally see my own reflecting back at me.

I’m heading back into the trenches of treatment. There are always weeks I dance around what I know is happening in my body, and there is always a moment when it becomes clear intervention is needed again. I get that heart pounding, mind racing, nausea inducing panic. Every time, I begin with a wail similar to Michele’s when the fears of her cancer returning, prompted by some kind of physical manifestation, would cause her to cry she just couldn’t do it again. Another surgery. Another treatment. Not again.

She candidly writes about trying to do all the healthy things she knew may bring some measure healing. I certainly have been dedicating myself to these things as well. Eating well, exercise, mental health counseling, consistent time in the Word and prayer and meaningful relationships with positive people have been my primary focus since my last round of plasmapheresis over Christmas and New Years. All of this is good. But when your DNA is glitched. When your cells have morphed into invaders. When God answers a resounding “No” to the pleading for Him to remove your thorn in the flesh you start to know

. . . the hard way, that sometimes trauma grows beyond a long walk’s ability to cure. The losses, crises, transitions, and upheavals extend beyond the arm’s capacity to hold. At times, even when your belief in and love of God run strong and true, your body just can’t take any more of the trauma.

The first time I had apheresis I was in-patient in Maryland. It was a year ago. Dan and I left our girls on Easter weekend to begin this new chapter in my quest for healing. I had a three pronged nearly foot long “Quinton” catheter placed. It hung from the side of neck and made every movement uncomfortable. I had eighteen surgeries under my belt by then, five in that hospital. Because my venous system is also affected by my EDS I require a PICC line for most things. I knew the interventional radiologist and trusted him and the team implicitly. Still, I had nothing to compare this placement to. Lidocaine doesn’t really numb me. I tell this to everyone who tries to use it. They never quite believe me. I’ve learned to bite my lower lip, hold back curse words and let people take the cut. I think everyone on the outside looking in at my life must somehow think it gets easier or less frightening or even less painful to go through these traumas over and over again. I’m telling you it does not.

When I repeated my treatment locally and out-patient in early September, 2014, we decided to have the line placed at my insurance preferred hospital for financial reasons even though the actual apheresis be at a local out of network hospital. My dad took me for a scheduled 7 am surgical appointment. There was an emergency that required the room, equipment and doctor and nurses I was supposed to have. The hours dragged on while I laid in my cap and gown in holding. Every once in awhile a nurse would poke her head in and tell me it wasn’t going well in there, and it would be a little longer. I had treatment scheduled at the other hospital at 2 pm. Finally they were able to take me back, but the entire room seemed disheveled. The nurses were exhausted from whatever they had just gone through. The doctor came in and said he knew I had to rush over to make my treatment time so he wasn’t going to use any sedation drugs at all, just a shot of lidocaine. I made my “it doesn’t work for me” plea. He brushed it off, and he took the knife to me. It was horrific. The entry for this tunneled cath was different. He kept getting the needle in but couldn’t get the angle right to jam the tube in. He was frustrated and I could literally feel the frustration in his frenetic efforts. I was bleeding. I could see it and feel it. I was freaking out and hot tears were running down both sides of my face into my ears. It was sewn lopsided and pulled and chaffed the entire time I had that particular cath. I developed a huge bruise around the area from the jamming and pushing of the tube. I swore I would never let that doctor work on me again.

My last round of treatment was late December, 2014. I didn’t care what the extra cost I knew I wanted the cath placed at the same hospital I would have treatment. They were so much kinder. They tried to give me some anxiety and sedation type drugs. I think they calmed me a little. I was still fully awake and very aware. The lidocaine was once again like a placebo. The doctor was much gentler with insertion. I still remember crying the entire time. Once of the nurses stood next to me and wiped my face with tissues.

Monday at noon I will have a catheter for a central line tunneled from a cut in my jugular all the way into my vena cava. This allows for multiple lumens so blood full of bad antibodies can leave my body and theoretically clean plasma in the form of albumin can enter my body all at the same time. Tuesday I will begin the first treatment.

The plan is to have five spread out over ten days. This has typically removed about 98% of my bad antibodies. What we know now through more cases and research is my body is slowly recreating these suckers and around 60-75 days after treatment I am back where I started in terms of the science and symptoms. The new recommendation agreed upon by three of my specialists, including my cardiologist in Toledo who I saw Tuesday, is we clean me out and follow immediately with an old chemotherapy drug. It is well understood. It is easy to administer weekly. It is easy to monitor for side effects and toxicity and would hopefully suppress the bad antibodies from returning. There are three other drugs we can try if this one is not tolerated. The time frame for this treatment would be six months or longer.

My parents are in Spain. My girls are on spring break. The logistics of this treatment are so hard because each day I have to go very early in the morning to get labs drawn and either sit at the hospital for hours waiting for a call from the unit for a time or drive home and wait and then go all the way back. We have Monday worked out with Dan taking off and my sister helping with the girls. Tuesday Dan will leave work and take me whenever they set a time for treatment. Even if the girls have to ride along and they drop me and then pick me up it will work. We had a little family meeting last night. Dan said, “We are just going to do our best. That’s all we can do.” There is no molly coddling our girls anymore about how this sucks. This is another break from school where all the focus is on their mom, and they have to stay still, be quiet, watch movies and wonder how the rest of their friends are having fun.

Thank you for the offers to help with meals. My friend created a Take Them a Meal schedule. The sign in is “Snyder” with the password “Help”. All our other needs are repetitive, and I weary of making them known. More than anything we need prayer. Please pray.

Michele writes at the end of her story,

Making peace with the unexpected life isn’t some trite, Christian cliche. It isn’t a beautiful string of words that look nice and shiny hanging around my neck. The kind of peace that weathers a furious squall by sleeping in the boat is both hard earned and God delivered. One story–and serving of manna–at a time. And by the mercy and grace of the one who walked me through all the storms leading up to this one, I can finally say, even as the rain soaks my face, “I am convinced.” He will not let me go.

Today I feel like I just can’t take any more trauma.
What I believe about God says I can.
I am convinced.

Our Hope remains.

When you are faced with a daunting trial what Scripture do you cling to the most? Will you comment here with a verse so I can feed on truth in the coming weeks? And will you use the share buttons below or quietly ask a friend to pray for my family and I? We are grateful. I am giving away a copy of Michele Cushatt’s new book Undone: A Story of Making Peace With an Unexpected Life. Each comment of Scripture will be an entry into a random drawing Friday morning, April 3rd.

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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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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Surgery Scheduled. Steady My Heart. A Team Danica Update

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Trust
“Then you’ll take delight in the Almighty; and will turn your face toward God. You’ll entreat Him and He’ll listen to you as you fulfill your vows. When you make a decision on something, it will be established for you, and light will brighten your way.”–Job 22:26-28

How many times have we fallen into a hotel bed in Cincinnati, Ohio? I should have been keeping a tally along the way. Our first trip was April, 2010. Danica was two and a half years old. We saw the crazy 3DCT confirming her atlas assimilation and how badly her first Chiari decompression failed her. The five months between the tragic news and her second decompression and difficult fusion were filled with second, third and fourth opinions. The surgeons threw their hat in the ring only to second guess themselves and the risk vs. benefit for our little girl and their own surgical careers. There was so little information about a case like hers. We were praying like crazy but moving forward in fits and starts. Many of you read our story as I pecked it out on our little Team Danica blogger site. You were witness to the wrestling of faith and fear. You saw the strain in our marriage and family. You saw me breaking physically and mentally as I fought for the best chance at the best life for my girl.

I’ve been reading for an online Bible study I’m doing from Suzanne Eller’s book Come With Me: Discovering the Beauty of Where He Leads. I’m seeing myself in the humanity of the disciples as we dig deeper. These men saw crazy impossible miracles and days later questioned the economics of a few loaves and fishes and thousands of people. God gave us a miracle. As time passed I thought God was punctuating Danica’s suffering so we could move on to my own bitter fight. The disciples were always forgetting, weren’t they? I don’t want to forget our first miracle. Suzie writes about her husband’s cancer diagnosis years after her own fight with breast cancer. “We beat the odds, and that was a gift. For a long time I thought that was the big miracle, but later I realized the true miracles came as we dug deep into our faith and came up with enough to make it through the day–or the hour if that was what was required.” Whether it’s been six days or six years you’d think I would forever remember the kind of healing and scandalous provision God made for us, but sometimes I don’t. There were moments leading up to our Cincinnati trip I was too blinded by what was unfolding again to turn back and SEE. My heart is fused forward, like my literal neck. Forward. Do the next thing. Do the next thing you think you cannot do. In the past few weeks I’ve been reaching through our story to remember. It aches in the deepest place. You’ve been asking. You’ve been praying. If I write it. If I say it. It’s more true. So I haven’t.

“God, I don’t think we can do this.”

Danica needs another complicated surgery. Her beautiful hardware is broken along with at least one level of fusion. She also has a piece of shunt tubing left near her brain stem. It’s dangerous and needs removed. I could write a neurosurgical and cervical spine treatise here, but it would confuse most of you. We went to Cincinnati with trepidation. After our scans and appointments in late July her case was escalated to new surgeons. We had no idea what our meeting there would look like. I approached it as an information gathering session. The surgeons were humble and kind. They patiently let me ask every detailed question. Dan and Danica mostly listened but felt comfortable in raising their own less clinical concerns. We walked away with an ambiguous scope of surgery and some warning flags. We returned home dealing with Danica’s escalating anxiety about the hows and whens of surgery. “Mom, I just want to know what’s going to happen and MOVE ON.”

While waiting for an important opinion from a surgeon at Johns Hopkins we prayed for guidance. I begged God to make the crooked path straight and help us know for sure where we needed to be. He answered. Last week I got the second call from the Johns Hopkins surgeon after he reviewed every single bit of Danica’s history, prior op notes and her imaging. All the concerns were addressed before I could even raise them. A light shone bright. There are still many details to work out, but her tentative surgery date is Wednesday, October 12th, in Baltimore. She needs an invasive myelogram to see exactly how to approach the drain tubing in such a precarious place. We will have several days of pre-op there before surgery. She will be hospitalized a week or so after surgery. Depending on how she is healing we may need to stay in the area for awhile after discharge. And she will have to wear a brace. There’s no posturing. This is a hard surgery. The brain part. The hardware removal. The new fusion including taking some of Danica’s own rib to make fusion slurry for her neck. This is harder than the prior one, but it must be done and soon and in a new city and at a new hospital.

I’ve been pushing myself to get the girls settled into their new school year. I’ve been trying to spend heart to heart time with my Laney. I finished my last big round of chemo last Tuesday. I will have a Rituxin treatment every six weeks moving forward. My C4-5 is cachunking every time I move my neck. My appointments planned with Dr. Liu at UVA for shunt post op and my scans and appointment in Chevy Chase with Dr. Henderson are the Friday and Monday before Danica’s planned surgery. I know in my heart I won’t be able to make them, but I refuse to cancel them. I need them. I can’t figure out the logistics, but I hate to be so close and not follow through. I’ve been on the phone for hours every day with hospitals, billing departments and our insurance company. It’s soul sapping work. The Virginia hospital where I had my VP shunt placed in April sent my account to judicial affairs. They are suing us. In all our crushing medical debt this is only the second time a hospital has gone to this measure to get a judgment to pursue a levy of Dan’s wages. I’m trying to understand the amount. My insurance company is helping. If I agree to make any payments then I’m accepting the amount which we think is wrong. I’ve focused on paying Danica’s bills this year to prepare for possible surgery at the hospital in Cincinnati. (The money you’ve donated has made the way for us to take those trips and pay most of those bills. Thank you. Thank you. Can you feel our hearts? Thank you.) I try to keep the stress from Dan while quietly informing him. He is working so hard. We can only do what we can do. He can’t become paralyzed by the weight. I try to carry it. I’ve hit a wall. My left eye is twitching. My jaw hurts from clenching and grinding. I ache all over. I’m out of cortisol. The adrenaline is spent.

“God, I don’t think I can do this.”

I’ve felt the needle in my spinal cord. The cut in my back to take a rib. The slicing of the back of my head and neck for a third time. The spasms from damaged nerves and cut muscles. It hurts like hell. To look in my Danica’s eyes knowing that agony is suffering multiplied.

A week ago Danica and I were driving to Paper Allure, a sweet #pentopaper shop I love, to pick up a birthday gift for a friend when the call from the Hopkin’s surgeon came. I pulled over in a parking lot, put him on speaker and jotted notes. Danica heard the entire thing including new, more scary parts of her surgery. She was quiet the few blocks from where we stopped to our destination. At the store she saw a display of bracelets hung by clothespins with one word on them. They are made of swarovski crystals and were a little pricey. She asked if she could have one. I reminded her that she had a birthday soon and maybe it would be special to get one to wear for her surgery. The young lady helping me overheard us. She went in the back room to wrap my gift, and the owner of the shop told her she could let Danica pick one. Kindness changes everything. Danica’s eyes lit up and out of all the possible words like hope and courage and believe she picked trust. The bracelet is from a beautiful project called Little Words. It has a little gold tag with a number you register online with your own story. You wear the bracelet as long as you need the word. When you meet someone who needs the word more than you it’s time to pass it on. They log on and continue the narrative of the life of the bracelet and the one word. In the car on the way home I asked her why she picked the word she did. With the simple faith of a child she said, “Because I TRUST God.” She’s asked for me to read her old entries on Team Danica. She wants me to tell her about the Gauntlet. She still believes in the gift. Oh, God, I can’t see it, but she can. As I tucked her in bed that night she asked to see ALL my scars. She said “If you can go through that many surgeries and be okay, I’ll be okay.” This weekend we worked on making a folder of photos and short video clips from her journey. I’m wanting to make a multimedia slideshow with a new fight song. I played a few I was considering on YouTube for her. She ran to her room and grabbed the first edition ipad with the shattered screen, the one someone bought her six years ago while she was in her wheelchair, and said, “This is the song we should use.” It was Kari Jobe’s “Steady My Heart.” It’s a song on her own playlist she listens to over and over again. I cried as we listened to the meaningful lyrics.

She believes.

He’s here.
He’s real.
We can trust Him.
Even when it hurts. Even when it’s hard. Even when it all just falls apart.
We can run to Him.
He is lover of our hearts.
He is healer of our scars.
We find refuge in His arms.

My Danica Jean is taking the lead. She’s grabbed my hand. She’s reminding me to lean hard. She’s showing me how to trust again.

“God, we can do this.
Through Your strength.
By Your Grace.
We can do this.
Please, steady our hearts.”

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Do you See? Gauntlet Story Feast

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*“Our whole business, then, brethren, in this life is to heal this eye of the heart whereby God may be seen.”–St Augustine

DSC_0156

I wrote the following post December 2, 2011, having just returned home from my first neurosurgery. I’m now snuggled under the same quilt in my own light filled home recovering from my seventh neurosurgery. I am so filled with suffering I can scarcely breathe. It is not the physical hurt. I’m convinced I could win a pain endurance trophy in a suffering Olympics. I am only slightly bothered by intense post surgical pain, because I can mentally understand it. Compared to the headaches before this latest fusion and the insane burning of my hands and feet, both of which resolved instantly with the pressure removed from my spinal cord, I know this is the good kind of ache. This is skin and flesh binding to one another over additional scaffolding in my delicate spine. The suffering I face now is in my mind and my heart.

I believe I see clearer than ever, but those who have necessarily walked this Gauntlet with me seem to have cloudier vision and lost more perspective each time we’ve done this. Maybe they are just tired. My oldest daughter, Delaney, came to the foot of my bed yesterday. We were talking about upcoming school shopping and in the honesty we’ve always shared she said, “This is just hard. You are grumpy, and I know it is because you are hurting, but every summer is like this.” I am wrecked. The truth is I have one of those “on this day” apps for Facebook, and I realize how many years we have been in continuous crisis, leading up towards it or recovering from it. Dan and I had a fight last night. We don’t fight. Ever. Truly. I sometimes want to give him an out. He has to want that. All I wanted was a hug. He said I was too “brittle.” I know he wonders if he will ever have his wife back. We both know he is not cut from the cloth that cares for someone sick long term and certainly not disabled. He cannot advocate. He can barely sit in a hospital room. I don’t think his love for me is tied to this. I think it’s just too much to ask of him. I know that’s a real thing. You’re a fool if you think it’s not. My dad reminded me recently one of the most painful things I know to be true. “Most men would have left.” It is only my little Danica whose empathy seems to know no bounds. Although she cannot remember fully her own surgeries or even the months of being held in a brace which kept others from real touch she finds me and clings to me in the awkward way you must when your mommy is wearing an Aspen collar all day and night.

I see like the blind man who Jesus took outside the city and spit on earth and covered his eyes with clay and healed him. When I read this oh so old post I almost laugh at the beginning of that miracle in my life. Surely it was not only meant for me. The suffering I feel today comes from my vision being almost crystal clear and less myopic every day, and the paralyzing fear those close to me are seeing less and less. As I wade through my usual post surgery self pity I push to begin going back to work. I am finishing my book. I edit based on these new stories I’ve gathered and the added perspective they bring. I realize more than ever this book is for those of us who drag our chairs around in a circle each week and say, “Hello, My name is Monica, I have,” and we state the laundry list of conditions that are not us but that make up our bodies and have become the threads that hold together our lives. We share the things even those who love us most and try the hardest can only make out through a mist.

Nora Gallagher was presenting at a writing conference in Washington DC the weekend our family left for the beach. I desperately wanted to attend. I took her book Moonlight Sonata at the Mayo Clinic to read on our trip. I suggest anyone beginning or walking through a journey in the world of illness and medicine and sorting out their faith in the darkness and sometimes blinding light the long walk brings to read this honest and beautiful narrative. In her last chapter she writes:

Following Jesus was meant to be an ongoing movement, not a creed, not a wall of set in stone words. A place where practices, like prayer, like meditation, were taught, where stories and memories, largely about vulnerability and suffering were collected and shared. The body’s pain and suffering were meant to be a part of this whole: I don’t think Jesus had in mind a place where you had to tolerate the empty predictability of a service and stand upright at the coffee hour if you had been diagnosed with lymphoma or sarcoidosis or lung cancer. He was, at the heart of his ministry, a healer.

And the stories of his followers were meant to be taken seriously to become part of the ongoing larger Story. A river of stories, joining the sea. The living stories of a faith’s followers are what keep it alive.

I have more regard for how each of us finds a way, the man in scrubs playing the Moonlight Sonata at the Mayo Clinic, the girl in the wheelchair, the boy with no hair running in the wind, each of us feeling our way in the dark. “The infinite value of one human being,” a friend said, “isn’t that what it’s all about?”

This land of illness, behind the wall, is much larger than I thought, and through its lens, the world we all live in, what we call the natural world, becomes more precious. I said I would give quite a lot to have my own body back, but yesterday I saw the evening light falling on the old oak trees in our park, their bark like the skin of elephants. This world is so beautiful, and not only can I still see it, I no longer pass through it quite the same way I did before. I, at least sometimes, am in it, in its beauty, in its enchantment, in its divine life…”

I want healing in so many ways, but more than any physical restoration I want the kind of heart healing that causes me to see Him clearly. This is my work. This is my calling. This gives me purpose in my suffering this afternoon.

Do You See?
By Monica Kaye Snyder
Written December 2, 2011

I’m sitting here in bed propped on many pillows and covered with my favorite “story” quilt from home. I’m looking at the sun glistening off the peaceful lake right outside the floor to ceiling doors and windows to the left of where I rest. I watch the dancing rays on the simple colors and patterns of the soft rug covering the hardwood floor. Classic and simple furnishings comfort me and are a present wrapped in the way beautiful space has always been a gift to me. There are pictures of people I do not know smiling at me. They have a summer life here, and because they are part of this big household of faith they opened their home to me to heal. I have wanted this. I have prayed for this. I have desperately needed this time and place more than I ever could have imagined. I see.

If you have been reading this blog from the beginning you know my theology has often brought me to ask many questions to a God I believed in and trusted but still held at bay when it came to His providence and how it worked in tandem with my sin. I especially questioned Him when it came to the suffering of Danica and my family. He recently brought me to this passage from John 9:1-3.

“As he walked along, he saw a man blind from birth. His disciples asked him, ‘Rabbi, who sinned, this man or his parents, that he was born blind?’ Jesus answered, ‘Neither this man nor his parents sinned; he was born blind so that God’s works might be revealed in him.'”

Four years ago Danica was born through months of intense physical suffering and great loss on many levels. The verse I would cling to was from Job 42:5, “I have heard of You by the hearing of the ear; but now my eye sees You.”

I have literally a hundred amazing stories to tell about my trip to Maryland and surgery and healing. They all speak directly of a God who is always in the details and thrives in showing His Grace through people. The morning of my surgery my sweet sister-in-law Amy took me to the hospital to get registered and get my PICC line placed. I did not feel so much nervousness as I did really dreading the process that leads up to actually being wheeled into the room and getting to the real business of surgery. If you’ve been through many surgeries you know that everyone comes in and meets you and chats about certain history and reminds you of the risks and complications that could arise and then has you sign a bunch of forms. There were two people during this process who blew me away. First I had to go over and register and show my identification and insurance card, etc. When anyone finds out you are a patient of Dr. Henderson it seems there is a special kind of reverence and care surrounding all the dealings moving forward. This sweet woman saw a countenance on my face that she instantly recognized as being a “believer.” She said, “I am already praising God with you for what will happen in that operating room today and during your healing.” I see.

When Dr. Henderson came in to speak with us he had his classic blue blazer on and held my hand tightly as he prayed over Dan and I. He asked for God’s guidance of each movement of his hands and each decision he would make during the surgery and then he asked specifically for my healing so I would further be able to glorify God by doing His will in His kingdom.

Stop. Read it over again. This man who would cut open my head and neck and painstakingly move around in my brain stem and spinal cord had just prayed the desire of my heart. All I have longed for is to be doing God’s will and giving Him glory. I know these heavy burdens are not given lightly. With them come great responsibility to bear them into something beautiful and eternal. This is why Dr. Henderson does this work. I cannot be healed and go back into a life anything like what it once was. I’ve SEEN and have to tell about it.

When I came out of surgery and began to get my bearings in the recovery room all I could say over and over was, “I CAN SEE.” The black floaters I had suffered from for years, particularly in my right eye, but most severely the last months as the pressure in my head had worsened were completely gone. As I type this now I have no obstruction of my vision at all. Although I am in considerable pain from the rib harvesting and my large head and neck incision I do not have the paralyzing vice grip in the back of my head. I do have quite a bit of nerve “damage” from the screws put in my upper skull to hold it in place during surgery. I have felt like my head is numb. I know many of these post surgery pains will take patient healing and rest to make it a true success.

I am praying that all the faith being made sight will unfold in your life and mine so the power of God can and will be seen in us.

About Monica Kaye:

Monica Kaye Snyder is a voracious reader. She is a blogger, a writer and maybe even an author. She continues a long journey of chronic illness and daily physical suffering. Some of her diagnoses include Chiari malformation, Ehlers-Danlos Syndrome, Tethered Spinal Cord, Craniocervical Instability, Postural Tachycardia Syndrome, Intracranial Hypertension, Mast Cell Activation Disorder and most recently PANS/PANDAS. She’s seen real miracles happen and holds on to Christ’s Hope as an anchor for her soul while living in great pain. She is wife to Dan and mother to Delaney Jayne and Danica Jean. She knows for sure if she does nothing else well in her life, this will matter and be enough.

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SHARE YOUR STORY. 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.

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The Thorn. Keep Bleeding. Turn it into Love

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The cursor blinks. I edit every thought before it can escape through my fingers. I’m back to a place of intense and unrelenting physical pain that clouds how I see myself, my family, my community and my faith. I’m at a point where talking about my suffering in any forum, even my close personal relationships, seems self indulgent. This thorn is not going to be removed. Be quiet. Try and make your life about something else. Anything else. 

Today I’m in bed with deep heat along my thoracic spine. I spent the first hours of my day making phone calls to follow up on recent adrenal testing I had at the hospital and pre-registering for one of several kinds of MRIs I need before my appointment next Thursday with my neurosurgeon in Maryland.  I wrote several cards to sister warriors recovering from their own surgeries. I was back and forth to the bathroom. I had a serious mast cell attack over the weekend leaving me more ill than usual. I cannot seem to recover. I will get dressed soon and drive to the girl’s school to deliver snacks for the golf team’s away match and pick up Danica. This will take any spoons I have left.

Yesterday I made a rash decision to take my Danica’s Rolo to boarding for a few days and nights. I spent Sunday in frantic pain, and I began to count the number of times I was bending to help put him on the leash or take it off or put him in his crate and get him out or grab him when he was chewing something he shouldn’t or was playfully chasing my little Twixie. I was doing more than before because Dan was working overtime again and Danica was still recovering from her fall last week. Her spine was hurting too. I woke with desperation. I had to know if being still could improve the suffering of neck spasms and the scary symptoms of dystonia in my limbs, neuropathy and loss of feeling in my hands and feet. Most of all I needed a break. The guilt overwhelmed me.

“What good is guilt? We ask. We like the sound of the question. It puts a crude finger on a heartbeat in us that won’t stop racing, a pulse broken in sympathy. It makes us talk. It makes us talk about ourselves. It makes us confess. We want to purge something even confession won’t justify…”–James Agee

Someone wise once told me guilt is not an emotion. You either are or you aren’t.  It is not my fault I am so broken and ill. But I did promise my daughter a dog if she would hang on those long days and nights following her brain and spine surgery. I let her draw pictures and dream of names and study breeds while she wore her brace and sat still. I took the money from my parents, and we drove her to meet this little dog who we all now love but wonder if we can keep. I am guilty of saying “yes” to something I should have known may be the literal straw that would once again break my back. And now I face the forever guilt of perhaps needing to give him away to another family better suited for his care. It is one more thing my children will have sacrificed or lost because of my disability. This is an overriding theme in their narrative. I’m missing for large chunks of time, either away for surgery, in bed recovering, skipping school functions, concerts and awards programs to avoid mast cell attacks, absent from volunteering in their classroom or for the PTF and building relationships with other families because I cannot commit to anything. I’m not guilty, but I’m confessing my heart breaks every single time my hard robs something from their good.

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I’ve long loved the artwork and words of Ruth Chou Simons of Gracelaced. I was gifted a beautiful print that hangs framed in our bathroom. My 2017 calendar is from her stunning collection of desert watercolors, and I frequently mail her lovely notecards. Her beautiful book by the same name was delivered last week. Each page is a new gift. I am working through it slowly. I’ve stayed in the third chapter titled “Sufficient” for almost a week now. I’ve sat with the image of my thorn in the flesh, the one God has not chosen to remove. Ruth writes:

“We miss the lesson when we pick at the thorn…nurse it…bemoan it…curse it. The enemy would have us so blinded by the pain of the thorn that we can’t see the beauty of the rose garden. I’ve been there so many times…so consumed by the discomfort that won’t go away that I can’t experience what fragrance of grace lies just ahead. Look past the thorn to how Christ is enough in the midst of it. His Grace is sufficient for the thorn He chooses not to remove.

Friend, would we praise Him for His sustaining strength in our lives if it were not for reaching the end of our strength?

Would we consider Him enough if we did not find ourselves lacking?

Would we know humility if not for the discomfort of obstacles and the pain of intrusions?

Would we, as did Paul, rejoice to boast in weakness if not shown the truth of our Father’s seemingly backward paradigm of greatness–humility?

Today’s thorn stands guard over tomorrow’s rose. Don’t be surprised when our heavenly Father chooses to allow the wounding of our pride this day. He does so lovingly, sovereignly, and without mistake-in our unremoved pain-the rose we long to behold, just beyond the thorn.”

I’m weak. I’m poor. I’m humbled.

I’ve been meditating on I Peter 5:10:

“And after you have suffered a little while the God of all Grace, who has called you to His eternal glory in Christ, will Himself restore, confirm, strengthen and establish you.” 

Restore. Confirm. Strengthen. Establish.

The rose in the bud closed so tightly. I prick my heart on the thorn. It’s bleeding, but there is love in the blood.

Our Hope remains.

(Thank you for continuing to pray for our family. We are hard pressed on every side.

We need great wisdom to know what to do about Rolo. I’ve been in contact with a trainer who could work to make him similar to a therapy dog for Danica and myself. This would be a two week boarding situation away from our home and then some learning on our end when he returns. This is very costly and not an option right now, but it is the desire of our hearts. Whatever we decide please pray for Danica most of all.

Please pray for my trip to D.C. next week. The flying, brutal scans and appointment and the courage to face whatever we see in those images never gets easier. My dear friend, Kristin, who many of you have been praying for as she fought Lymphoma, is flying from Denver. She will drive me, and we will have sweet time together as friends. I also plan to meet the founder of Healing Hearts, the respite organization hosting Option EDS (the retreat) with me. There are some very specific financial needs associated with this appointment. Please pray I will be able to negotiate payment. We have maintained access to care with always enough. I am weary of the fight. I become more panicked when collections interfere with actual needed appointments.

Please pray for Dan and I. We feel like we are drifting and out of sheer exhaustion and pain it is difficult to make the space and time to reconnect. Our family is only as strong as our marriage.

Please praise God with us for protection over Danica during a big fall last week. She is okay. Please praise Him for provision for the window that needs replaced in Laney’s room. God showed up in the most amazing way to meet the specific request.  It’s such a relief to know it will be installed before winter.

He is still good.  Thank you for being the one’s carrying our mat to Him over and over.  We suffer gratitude.)

Gracelaced1

 

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What Can I Give? An EDS Retreat is Born

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“As you move to the rhythm of the Spirit of God, what is within you that you can now give to someone else? Not for the glory of yourself, but as a person who bears the image of God in the world. What are those things in the deepest part of who you are, the personality and desires and unique blending of history and circumstances and longing–what is most alive in you as you are united with Christ that you can now pour out as an offering unto God for the benefit of others?” ~ Emily Freeman

We begin with our stories, always.

It was June, 2009. Delaney was six. Danica was twenty months old.  A few weeks before leaving for vacation our baby girl’s neck went crooked. The appointments for scans and specialists were a month out, and we decided to go ahead with our trip. Each mile seemed like a hundred as Danica cried in her car seat. The photos from our week show her wincing in pain and confusion. We didn’t yet know the words, “Chiari” or “Ehlers Danlos Syndrome.”

Over the next six grueling years we begged God to redeem that trip to Corolla. He did this through the love of dear ones who watched our struggle and wanted to make some kind of respite happen for us in a place we longed for and needed to return to. The time away in May, 2015 solidified something in all of us. We were strangely tethered to this particular geography of sand and waves and horses living wild and free in the dunes. We felt like nothing could touch us there. Wounds that were continually opened by our never ending hard scabbed over in the salt water of the Atlantic. There were no doctor’s appointments. There were no collection calls or bills arriving in the mail. I had a wellness near the sea I could never grasp back at home. We didn’t speak much about the trip before leaving. Our plans have a way of tragically falling through. Those who knew said things like, “You guys deserve this.” I would squirm. I know and love too many without even a hope of a beach vacation. I never once thought it was anything but pure grace.

The heart of this retreat began beating long before I knew I was carrying the dream. It was conceived in December, 2011 in a gorgeous home on the shores of Lake Cable in Canton, Ohio as I rested and recovered from my first Chiari brain decompression and cervical fusion. The wall of windows facing the water was a prism of healing light and heat. I spent ten weeks there. They were some of the longest and most painful days and nights of my life, but I knew the opportunity to mend in a beautiful and peaceful place was rare treasure.  I wished I could give this same experience to other women.  I imagined the empty bedrooms filled with sisters who needed to come away and rest.

Just three months following my first neurosurgery, I returned to Maryland for a tethered spinal cord release. It was the beginning of many years of serious brain, spine and abdominal operations. Danica’s diagnoses uncovered the faulty DNA I’d passed on to her and led me to understand my own life of symptoms and suffering. During this time I blogged much of Danica and I’s story. I formed relationships online with others who were sick like us. Almost all of our care was away from home and required travel. An amazing community showed up.  We met in hotel lobbies, doctor’s offices and surgical waiting rooms. We texted, messaged and called one another day or night.  We became family.

Last summer we found out Danica needed another scary brain and spine surgery. Once again someone close to us gave the hope of a trip to hold on to. We imagined ourselves sitting in the sun and surf having survived. It gave us something tangible to fight for and look forward to. In late May of this year we made it back to Corolla. The house we stayed in was not just a rental but someone’s real home. I moved through the rooms, and I thought of the girls I longed to invite to rest by the sea. Their names were circled over and over again in the “retreat” journal I’d been keeping for years. They are young women I’ve met in internet support groups, face to face waiting for appointments and scans and in hospital beds after surgery. I’ve encouraged and loved them through pen to paper, care packages and oh so much prayer. My husband Dan and I sat on the back deck watching the sun slip into the Currituck sound and talked about the dream to host zebra warriors there.

I felt the pressure and fullness of time when one is to finally say “yes” to a calling birthed from the most passionate places of joy and pain. I knew my first leap of faith would be asking for donations to put a deposit on the place the retreat would happen and committing to dates. I found a big house with an elevator and other accessible features and sent a request to the rental company about availability for May, 2018. I explored forming my own non-profit that would offer my donors tax benefits. To do this well I would need board members, an attorney, and an accountant.  I’ve always believed our family’s remaining medical debt needs to be paid before I form a foundation. As I sat in the chemo chair several weeks ago I wrote a blind email to Healing Hearts Respite Foundation, the only non profit respite house in the Outer Banks, and I asked.  I asked if we could possibly use their smaller home as a place for some of the mothers to stay the week of the retreat. I asked if their mission was broad enough to allow donations to come through them for the house rental and other retreat expenses. I asked if I could know them and learn from them.

Exceeding, abundant above all I could have asked was the answer. The founding director of Healing Hearts let me know they had a much larger home available in the same community as their respite house, and they would like to offer it for the retreat. We had several phone conversations that grew our excitement for the possibilities this retreat holds. I chose a date. I bought the URL for this website and created this place. 

Option EDS (the retreat) was born. 
Not to us, but to His name be glory.  

This post was written for “The Heart” of the retreat website several weeks ago. I’ve wanted to move slowly and prayerfully as I shared with trusted friends and family. There has been a whispered lie telling me I need to have my “problems” cleaned up before I can live my way into this purpose. Since bearing my soul earlier this week God has showed up in texts, emails, phone calls, the mailbox and on my porch. He’s reminded me the most beautiful gifts come through our utter dependence on Him. It is not in spite of but because of my painful providence He has called me to this work.

Please join me in praying for this seed of a dream. Link over to the site. Follow us on social media. Stay tuned to the beautiful stories of the people behind this first retreat.  I have much more to tell you about our host partner, Healing Hearts, and how you can help.

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