Monica Kaye Snyder

Feb 10
2016

Love Is A Mix Tape. You Stay

by Monica

Every morning your alarm goes off at 6 am. I hear you slide out of bed and into the shower. I ease from my pharmaceutical induced sleep into first prayers. Danica pads in from her room and crawls into your still warm place under the pile of covers for snuggles. The sure whistle of the tea kettle ends our snooze. I force my aching joints and fuzzy head upright and shuffle to my nest chair. Within minutes I’m wrapped in blankets and warming my fingers around a favorite hand thrown pottery mug. I always close my eyes for the first sip of the life elixir you French press for me. I taste your care in the special mix of beans brewed with precision and the perfect amount of cream and sugar. We don’t speak. The familiar and comforting aroma and taste greet me gently and say, “Good morning, my love. I cherish you.” After you make breakfast for Danica you join me in the living room for ten minutes of together. You look across the room into my eyes and find the answer to the question of how you will feel for the day.

Last week I woke with a sharp pain around my shunt. You could tell I was wincing, and my breath would catch when the knife came. Tears welled up in your eyes as you told me what it feels like to watch me suffer. You said every time I’m hurting you are too. You said as hard as it is to be me, it is perhaps even harder to be in love with me. It is pain multiplied. You are powerless to make it stop or even a little better. You would take it from me if you could. I know this, but I would never suppose you could survive even a day of the ache I’ve learned to master over a decade. It is mine to bear and yours to watch.

Saturday night we sent our girls away to celebrate fifteen years of promises made. Delaney was disgruntled, and I told her she is old enough to understand just a little how a man wants a woman and a woman a man. I told her she is lucky her parents are still madly in love and wanting time alone. Our plans to dine at our favorite restaurant were cancelled because my brakes began grinding and scraping. We haven’t been there for five years, since our tenth. We swore we would always make these milestones count no matter how poor but with the unknown cost of mechanics we didn’t chance it. Instead we went down the road for a cheese platter and cheap red wine. It was a feast for us. We told our love story back and forth to one another. The waiter brought us a piece of chocolate cake to share. I’m sure he thought it odd neither of us wore wedding rings, yours needing sized smaller and mine with the big gaping hole where the diamond used to be. Broken traditions, symbols sold, no gifts exchanged or surprises planned, just our rare and enduring romance built on a foundation of precious things no money could ever buy.

We came home and danced heart to heart to the melodies of our personal soundtrack until there was no space between your body and mine. God talks about two being one. Most consider this hyperbole at best. Why would you ever give all of yourself to someone else? Why would you sacrifice every bit of power and protection over your own heart to be true to another? Why would you forgive betrayal? Why would you stay? Why would you keep staying when life would be easier almost anywhere else?

You buried your face in my war torn neck and told me I am the most beautiful woman in the world. You traced my many scars with your fingers remembering the hard fought battles they represent but also the Grace, the healing and the Hope. You say you love me for almost everything I am, not in spite of it but because of it. You stay because my heart is your home.

Seventeen years in love. Fifteen years married. And the band plays on.

(Photo by Grace Designs Photography. Used with permission. From our anniversary photo shoot five years ago. I love we are wearing our rings here.)

This is side A and B of a mix tape that tells our love story. There are many more songs, but this is a framework. Enjoy. (I apologize for the clunky YouTube links.)

Be inspired. Splurge on itunes to make a mix tape for your love. Sneak it on their ipod as a surprise or burn a CD for their car. (Am I the only one who still burns CDs?)
What are your favorite love songs?

Hero. Enrique Iglesias. (Our first song. Dan used these lyrics in my 40th birthday toast.)

Bless the Broken Road. Rascal Flatts. (What a terribly broken road we both walked until we found one another. No regrets. If even one thing had changed we might have never met or loved.)

I Don’t Want To Miss A Thing. Aerosmith. (Armageddon was one of the first movies we snuggled up on the couch and watched together. I still cry when I hear this song.)

Your Arms Feel Like Home. 3 Doors Down. (For the first time in years I was safe. Dan was home.)

All That I Am. Rob Thomas. (Dan’s vows to me.)

Making Memories of Us. Keith Urban.

Better Together. Jack Johnson. (Good years. So good.)

Love Remains the Same. Gavin Rossdale. (We were both lost and wandering apart, but at the root we were still oh so in love.)

You Stay With Me. Faith Hill. (I broke promises. Dan forgave. Dan stayed.)

Let It Be Me. Ray Lamontagne. (Dan asked me to marry him again.)

For You. John Denver. (Our five year vow renewal song.)

These Are the Days. Sugarland. (Grabbing sweet moments.)

Steady As We Go. Dave Matthews Band. (Danica was broken, and we didn’t know how to move.)

Dancing In the Minefields. Andrew Peterson. (We needed to love like Jesus to survive.)

I Won’t Give Up. Jason Mraz. (We couldn’t imagine life would get any harder, and then it did.)

Broken Together. Casting Crowns. (By His Grace alone.)

Thinking Out Loud. Ed Sheeran. (Our Tucson Song.)

Better Days. Goo Goo Dolls. (Our continued anthem and hope.)

Dance Me To the End of Love. The Civil Wars. (Fifteen years. Still Dancing.)

Jan 27
2016

Listen. One Word. And a health update

by Monica

“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.)

Dec 1
2015

Runaway. Advent Pursuit. Advent Rescue. And a giveaway

by Monica

The Runaway Bunny was a favorite of both my girls when they were younger. Above is a photo of the well worn board book I now keep in their trunk of childhood treasures. Hundreds of times over I whispered the sweet story of the little rabbit trying oh so hard to flee from his mother. His persistence was ever answered by her patient pursuit of love no matter how far he ran or how deeply he hid.

Several years ago on a dark and frigid night I attended an intimate Christa Wells concert at a tiny stone church in Akron. I was not well and should have been in bed, but Christa’s music had been a lifeline of truth for me, and I needed to be close to her gift, meet her face to face and thank her. Performing with her was Jess Ray, an indie artist I’d never heard of before. I was sitting just feet away from the strum of her simple guitar and liquid voice infused with a hint of scratchy LP grit. I was completely taken in by a new song she had written around the framework of the children’s story I knew by heart. Her lyrics stripped me bare. On my way out I met Jess, and I asked her how I could find this song. I needed the words. I needed the music. She told me it wasn’t recorded yet. She had timidly played it for our huddled community that night. I came home and scribbled what I could remember in my journal. One line stood out. “I will leave behind the ninety-nine, oh that you’ll be mine.” Jess eventually recorded “Runaway” on her album titled Sentimental Creatures. It soothes on my peace playlist every night as I fight for rest in my pain.

Listen to it now.

I’ve been running hard.
I’ve been hiding.
There have even been moments I’ve made up in my mind I don’t want to be by His side.
I’ve been stomping and screaming.
I’ve been beating on His chest, because I just don’t understand.

Still, He is here.
Pursuing me.
Searching east to west.
Reminding me.

I will never see the bottom of His storehouse of love.
No choice I make,
No path I take will change His mind.
He will love me.
He will teach me to love Him again.

Listen again.

Sunday was the first night of Advent, but today, December 1st, is when we begin our walk and worship. Since 2010 our family has been celebrating Advent not just with weekly readings and candles but nightly ones using Caleb Voskamp’s handcrafted Cradle to Cross wreath. His rustic way of light takes us on a journey beginning with Advent and continuing through the Lenten season to the Resurrection of Christ. I think we bought one of the first 50 he made. Last year we added Ann Voskamp’s treasure of a book, Unwrapping the Greatest Gift, a telling of the Biblical narratives from the Garden of Eden to the birth of our Savior leading us to His indescribable gift of salvation. In the mornings during my own quiet time I read and meditate on Advent poetry and reflections including worn editions of Watch for the Light: Readings for Advent and Christmas, WinterSong: Christmas Readings from my dear Luci and Madeleine and Accompanied by Angels: Poems of the Incarnation from Luci. It is my favorite time of year for almost none of the reasons or feelings we are told or sold to celebrate. I have never needed the sacred discipline more than I do now.

I am plunging back into a grueling round of plasmapheresis treatments tomorrow. I will have a new port placed in the morning and head to dialysis for the first round. Over the next ten days I will have five rounds with days off in between to rest. I am too weary to remind you here of my complicated diagnosis, debilitating symptoms, past risks and rewards and why I’m doing this again now. I’m simply asking you to please pray for me. I know this works. I also know each time we access my main artery the odds of something happening increase. I’ve waited this long between treatments to try and let my venous system heal. I feel horrible during this process, particularly the evening after the pheresis. I’m thankful to have the opportunity to do it outpatient and locally, but it is a double edged sword. I need to be in bed and resting when I’m not at the hospital. This never happens as it should. In April, the last time I had treatments, there were complications, and I was hospitalized. Please pray for my husband. He took me today for an appointment with the overseeing physician and for labs. He told me he feels like he’s been kicked in the gut over and over again. Please pray for my girls. They are old enough to understand their mama will never be truly well. This is not an illness we get through or conquer but rather a way of living for all of us.

The past few weeks I have been increasingly frantic. My neuropsych symptoms war with my physical fatigue and the demons of infection cross my brain barrier and whisper lies about what my life is worth.

I’ve been running hard.
I’ve been hiding.
There have even been moments I’ve made up in my mind I don’t want to be by His side.
I’ve been stomping and screaming.
I’ve been beating on His chest, because I just don’t understand.

Still, He is here.
Pursuing me.
Searching east to west.
Reminding me.

I will never see the bottom of His storehouse of love.
No choice I make,
No path I take will change His mind.
He will love me.
He will teach me to love Him again.

He left the ninety-nine to search me and know me.
It is an Advent rescue of a runaway.
Friends, this is the Gospel.
He came to seek and save.
When everything else falls away I am safe in His arms, and He is rejoicing over me.

“So He told them this parable, saying, ‘What man among you, if he has a hundred sheep and has lost one of them, does not leave the ninety-nine in the open pasture and go after the one which is lost until he finds it? When he has found it, he lays it on his shoulders, rejoicing.'”–Luke 15:3-5

First Day of Christmas Giveaway
Tell me about a time you ran away. How did God pursue you and bring you back into the fold? I am giving away a copy of Jess Ray’s Sentimental Creatures in my first of twelve days of Christmas giving. Share this beautiful song with someone on social media and comment here to be entered. I will randomly choose a winner on December 12th. Stay tuned for new posts with more giveaway goodies! Blessings to you and yours as you begin your Advent journey.

Nov 9
2015

Surrender Every Little Thing. And a super sparkly giveaway

by Monica

“When we search for significance out side of surrender to God, we create our own version of God’s plan for us, and it rarely measures up.”–Deidra Riggs, Every Little Thing, Making a World of Difference Right Where You Are

It’s been more than eight years since God asked me to give up a life I thought was “significant” and become a vessel of brokenness and suffering. Three years into the journey He told me to take my Isaac, our little Danica, and surrender her completely to Him as well. October, the month of Danica’s birth, and three years later, the month of her big brain decompression and fusion, is and will always be full of gratitude and celebration of miracles and provision tempered with remembered grief and pain. My heart breaks and is healed over and over again on these and other personal anniversaries tattooed forever in my calendar brain. After twenty-one surgeries of my own there is not a safe month or even a week anymore.

I’ve seen the ram in the thicket. In every possible and literal way God has been our “Jehovah-Jireh.” He gave us the miracle healing of Danica. He showed up financially at every turn to give access to the specialized care Danica and I both needed. He gave me a clear diagnosis after years of mental and physical anguish. He moved mountains to get doctors near and far to be willing to take the risk to treat me. He’s surrounded us with the kind of love and support I never believed possible, and it hasn’t stopped.

I’ve been told by beautiful, nose wiping, carpooling, snack bringing, essential oil using moms they are in awe of our “story.” They say God has used it in their own hearts and homes to garner more gratitude for their everyday. I’ve mostly prayed God would use this hard He’s written for me however He deems to bring Himself glory, but on the worst days I feel sad and even a little mad when my nothing like I dreamed of life is a springboard for someone else’s comparative thankfulness. I want goldfish in my car seats and play dates and sleepovers at my house. I want to be cheering my daughter on at her volleyball games and to sit in the front row at her orchestra concert. I want to volunteer as a classroom helper and listen to second graders recite their Scripture verses. I want to go on even one field trip with my girl. I want a drop of frankincense diffused to somehow make me more well. I want to be tired from something other than trying to survive. I want to be tired from living. It’s not because I don’t think this struggle could matter. It’s because this isn’t what I wanted at all. None of it. I squirm at any romanticized version of the pain going on over here. It is brutal. It is one crisis to the next, and I know in my heart the supernatural healing God gave my girl is not what He has written for me at all. Until heaven I will be some measure of broken. Every day I wake up wanting something different and “better” for myself and my family. Every day I find my way back to the foot of the cross and remember even this is Grace. Every day I am called to surrender.

Deidra writes,

“Surrender to the work of the Holy Spirit and you will come alive. Exhale, and you will live. When you have spent it all and left it on the track, when you are left in silence and someone else runs all the red lights on your behalf, when you are at the end of yourself and you can barely remember the difference between up and down, choose to breathe. It is our direct reminder of the Holy Spirit at work in this world and on our behalf. It is our immediate reminder that God is always reaching toward us and lifting us to himself to breathe life into our long reach for a life that matters for something.

Breathe.

God will meet you there and receive your one, beautiful, miraculous breath as an act of worship and as a surrender of yourself into his purpose for your life.”

Much of my life is now lived in this Jacobean tapestry chair I like to call my “nest.” I am here in the early morning with numb feet, aching head and joints and too tight heart to sip the coffee my husband brings me, shake off my night time meds and snuggle my littlest. I find a Psalm here. I study here. I pray here. I write pen to paper to my family, my friends and even strangers here. I write for you to read and mostly for no one to read in this place. I am here on the computer and phone tending to a territory of people needing encouragement and prayer and light on their own difficult walks. I am sitting here when people come to visit and sink into the comfort and peace of my yellow sofa with a throw. I listen here. I am here juggling a calendar of appointments and treatment and surgeries. I am here when the bill collectors call and call and call again. I am here when I balance our checkbook and always find there is Dayenu, enough. More than enough. I am here when my girls are dropped off from school on days I cannot drive. My legs always wrapped in a blanket and dozens of books and journals and paper and pens stacked around me like a fortress. Beside me is my little dog, Twixie. She is faithfully here. I cry here. I cry a lot. I find myself back here in the dead of night when everyone else is sleeping soundly. My pain brings me to this place I’ve chosen over bed, as if being upright even on the worst days and nights will make me feel less worthless and more productive. I refuse to waste this. I plead with God to not let me waste this. Make this count. Please God. For You. I struggle here. I resist. I think there is no way this is where God could use me best, so I beat His chest and beg for something different. Anything different. I hold my breath here like a temper tantrum toddler. When I am almost unconscious from the display of lack of trust He gently helps me see my here and now, this time, this place, this body, this life, this chair is exactly where I will find my significance. He causes me to surrender EVERY LITTLE THING, and I inhale Grace and exhale praise, and I believe.

I turned forty years old last Thursday. An unplanned brain shunt revision in Maryland just a week before left my family and I weary and worn again. Surrender. I had to cancel a week long writing retreat on Lake Michigan I was sure He wanted for me and for Gauntlet. Surrender. I humbled myself to receive help once again from others to make my surgery possible. Surrender. Friday night my dear friend Janet and her husband along with my sister threw me the most fabulous birthday party ever. Janet made a toast and mentioned the illustrious “forty before forty” list I’d made and how many of those things I’d longed to accomplish were left unrealized. She then pointed out the almost forty people gathered together in celebration. They were in fact my true and important life work. I gasped at the beauty of this realization. Most of these relationships have been formed and nurtured and grown from this chair.

I am entering a new year of life and a new decade with a heart humbled. I trust you, God. I do. I know there will be moments and hours and days I will struggle, but I surrender EVERY LITTLE THING to you. I will inhale your Grace and exhale praise. I will believe this life in this chair matters in your kingdom and counts. My Hope remains.

Second only to words gifts are a crazy loud love language of mine. I’m so excited to invite you to join me in celebrating the launch of Deidra’s book with some awesome gifts! The winner will receive a gift set which includes a copy of Every Little Thing: Making a World of Difference Right Where You Are along with an Everlasting Light Shine necklace from DaySpring!

Here’s how to enter:

1. Share this post on social media to give your friends a chance to win this amazing book and super sparkly necklace. Maybe they will turn around and gift it to you!

2. Please leave a comment here about a way God has asked you to surrender your ideas of significance and give in to His greater plan for your life and let me know where you shared.

3. Totally optional but highly recommended is to head over to Deidra’s place and subscribe to her blog Jumping Tandem. I had the honor of meeting her at The High calling retreat last November and have been truly blessed by her writing and her life.

A winner will be randomly chosen from all the entries on Sunday night, November 15th, and announced Monday morning!

Oct 1
2015

Keep Moving. Just Five Minutes. Gauntlet Story Feast

by Monica

This week’s story comes from an EDS warrior who is passionately committed to awareness and empowerment in our community. I have to be honest, when I first read her story I hesitated. I personally have a hard time maintaining any type of physical exercise. No matter how many times I try to head back to the gym or even do daily walks and basic yoga and stretching I end up looser and in a flare. It is only since my recent surgery and beginning dry needling with an amazing physical therapist I have begun to understand why I am failing. Like everything else in my life my adrenaline tricks me into pushing myself way beyond my limits. Forty-five minutes is too much. Every day is too much if I’m not listening to my body. Kendra’s story began to resonate. Just five minutes. My PT added wisdom by giving me a simple formula of green light, yellow light, red light when doing simple stretching and resistance exercises. I had an “aha” moment. What if I could do “just five minutes” three times a day. I am thrilled to say I have lost weight, am stronger and feel better. When my tendency is to curl up into a ball I may need to stretch it out and breathe. I hope this story encourages you in your journey. Please take time to check out Kendra’s resources at the bottom of her story. She really is amazing.

Keep Moving. Just Five Minutes
By Kendra Neilsen Myles

I’m still searching for the perfect chair, position or anything that helps me tolerate sitting and working, even for five whole minutes. I do have a treadmill desk, but it’s too low and causes mid and upper back pain to flare also. When I am working, I do this constant dance between strange yoga positions while sitting, kneeling on a beanbag cube, or stretching while sitting and trying to work. You will never catch me sitting too long anyway, unless I’m surrounded by beautiful blue water, laying in the warm sun and have a frozen cocktail in my hand. That’s pretty much the only time I will drink more than a few sips of alcohol also.

Movement keeps me going. It’s momentum that helps me manage chronic fatigue and it is my biggest coping mechanism for chronic pain. I’m not talking about working out, I’m talking about the fact that I hardly stop moving unless I have to. I’ve never been someone who sits on a couch and watches TV or lays in bed. Laying in bed has its own fair share of issues. No matter what, I am constantly shifting positions – seated, standing, or laying down. I don’t think I’ve ever slept through the night, even as kid. I’ve always dealt with some kind of pain.

Being in constant movement, allows for me to shift positions all of the time. If I have to stand in one place for a minute or two, I start doing ballet exercises in place – i.e. heel lifts, first position ballet glut squeezes, etc. I move a lot even sitting or laying down, and I take any opportunity to engage and work my muscles. Doing so has always helped take the pain away, even for a second or two. However, all my little tricks and coping mechanisms prove nearly impossible when having to sit in a car for many hours. Read below:

I will be completely honest when I say that long car rides are the bane of my existence. Now I know why my husband was totally cool flying me to Florida after the EDNF conference, instead of me driving with him and the kids. I’m guessing that I’m not so fun to be around when I’m in so much pain. I have been known to start pounding on my legs, in order to help diffuse where and why I have the pain in the first place.

Car yoga – a safe stretch for me. No different from if I had my legs straight in front of me. Knees aren’t hyperextended.

The pain is excruciating and the muscles spasms that I get from sitting too long are horrendous. I try to work my muscles as much as I can in the car and when we stop, but it’s always such a hard cycle for me to get out of, once my legs have been cramped, or I’ve sat too long. The spasms become so tight and strong, that I can barely hold a squat (ie. In a public restroom), before my legs feel like they are going to collapse from fatigue. The fatigue is from my muscles constantly working so hard. When this happens, I am always reminded exactly why working out & staying mobile throughout the day is so important. If I wasn’t as active as I am, this is how my body would feel all of the time. I usually have constant muscles spasms and contractures in some places, but staying active and keeping my muscles strong, helps them not have to work so hard all of the time. However, sitting is a different story for me. Standing is a bit more bearable, because I can do ballet exercises while standing or modified squats, but sitting for extended periods of time is awful.

When I sit for too long, in a car or at a desk, all the little accessory muscles around my hips, pelvis and lower back, don’t have the rest of my body or the larger muscles of my lower half to help stabilize my pelvis and lower spine. Having a Hypermobile pelvis with a sacrum that constantly slips out-of-place (I usually pop it back in by contacting my gluts), bursitis in each hip, tethered cord, lordosis in my lower spine and issues with arthritis and degenerative discs in my lumbar spine (yes, this is just my mid-lower part of my body. Does not include other areas and issues there), doesn’t help one bit.

Why am I saying all of this when I usually don’t discuss my issues publicly? Because this is life with EDS. It’s real. I have my own fair share of daily struggles, but I’ve chosen to not focus on them. Doing so has never helped me in any way and always makes me feel worse. Leg pain is by far one of my most challenging issues. It makes me want to punch a wall. And I don’t really ever feel anger like that, but I do when the pain is this bad.

So, here’s what I’m going to do, because I really don’t feel like working out. I have to and need to — this is why I pick something small to do & I do it for “Just 5 Minutes.” Just five minutes is my own rule for myself to get me going when I’m not motivated or I’m in pain. It’s tangible, measurable and anyone can do something for just five minutes. It holds me accountable to myself for the promise I made years ago, so I wouldn’t end-up bed-bound, unable to walk and in constant pain like my Gram. My mom was on a similar path, but for different reasons. I knew as a kid that if I didn’t change my mindset, I would eventually become what was around me, because that’s all I really knew and all I saw.

I also know now that this is par for the course – part of the roller coaster of living with EDS. I’ve been here before, thousands of times and it gets better, because I’ve learned what I need to do and what I do not need to do. I also don’t freak out and think this is it, my body is falling apart and EDS sucks. EDS is hard, but harboring negativity only causes more physical pain and that is a proven scientific fact.

I’ve also learned that as much as I want to stretch (not too far, but I did stretch some bc it helps relieve pain temporarily for me), it doesn’t help me when my muscles in such tight contractures.

For my Just five minutes today, I’m going to do an online Pilates video and barre video. I’m also going to use my foam roller and trigger point balls to help relieve knots, as well as do a little yoga for my IG challenges. And if needed, I will take something to help me get through the night. That’s what the medicine is for – times like this and once I’ve done all that I can to help myself.

Then tomorrow, I will get up and go about my day like normal. However, I probably will head to Zengo to cycle the crap out of my legs.

Please read the disclaimer here. My way isn’t the right way for everyone and I’m not stating that these stretches are advised. Performing safe stretches is one of the ways that I’ve learned how to cope with severe chronic leg pain and it works for me. However, that does not mean it will help or is right for you. We are all different. Please seek the advice from your physical therapist or physician, before performing stretches that you have been advised against or have not done in quite some time. Attempting any of the stretches seen in the pictures included in this post, is done at your own risk.

About Kendra: http://strengthflexibilityhealtheds.com/kendra-neilsen-myles/

Facebook: https://www.facebook.com/Kendra.Neilsen.Myles
Instagram: @SFHEDS & @EDSPatientSolutions
Pinterest: @EDSPatientSol
Tumblr: Actvfaith3/StrengthFlexiblityHealthEDS
Twitter: @SFHEDS, @KNMyles, @EDSPatientsol & @StrengthStories

Or, visit sfheds.com for the latest on living a healthy and active life with EDS.

Other projects:
– Wellapalooza 2015 is here! Integrative Health & Wellness Conferences for patients with chronic and invisible illnesses: http://www.wellapalooza.com
– Moving Naturally with Hypermobility seminars: http://movingnaturallywithhypermobility.com/
– 2nd Annual “EDS Ride for A Cause” on November 15th, 2015 at Zengo Cycle in Bethesda, MD: https://www.facebook.com/events/814063915305731/ **All proceeds benefits EDNF**

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.

Sep 10
2015

In Everything You Do. Choose Life. Gauntlet Story Feast

by Monica

I have a beautiful new Gauntlet Story Feast story to share with you, but I haven’t quite finished getting it all together. My facebook memories brought up this quick post I made a year ago today on Team Danica. It left me in a puddle of tears. There is no way to number the minutes, the hours or the days when I have had to consciously choose life. It’s only by His Grace I’ve continued to say “Yes”.

Whatever you are facing today. Keep saying “Yes.”

“This day I call the heavens and earth as witnesses against you that I have set before you life and death, blessings and curses. Now choose life, that you and your children may live.” –Deuteronomy 30:19

This goes out tonight to every one of my warrior friends. We know what it is like to literally contemplate the choice with every dawn. How will we see this suffering, our own and that of our children today? Will we be paralyzed in the curses or move in the strength of the blessings towards the light and grace of this life . . . our life, the lives of our spouses and sons and daughters, our parents and sisters and brothers and friends???

CHOOSE LIFE.

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.

Sep 6
2015

If I Leave? Why I’m Going Away

by Monica

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.)

Sep 2
2015

Midnight Cancer. Please Ask With Me

by Monica

We were little girls. Long dark hair and deep brown eyes. Our hearts were knit like Jonathan and David’s. As years passed we both began to write. In journals. In letters. In the air we breathed. Behind the closed doors of our tiny bedrooms with day beds and dreams we talked about Jesus. His light was too bright to be dampened by an avalanche of doctrine and fear and doubt driving our search for an assurance He might genuinely love us for real and forever. We were serious and often sad because our hope seemed to be built on shifting sands blown by the winds of our ability to measure up and never on what He had done perfectly for us. When our church fell apart our friendship was swallowed by the chasm. We were coming of age. Our worlds had always been the same, day after day, service after service, hymn after hymn, and were suddenly separated in drastic ways. She stayed close to an upside down faith, and I ran as fast and far as I could away from everything God.

We attended the same University. Nestled in the beautiful Blue Ridge our kindred hearts were following polar opposite paths. While she sat and served in Campus Crusade for Christ determined to find the Jesus we always dreamed was hiding in the fearful mess we were told was absolute I was somewhere across the quad with fifteen thousand nameless students between us. I was drinking, using, giving away my body and crying out for someone to help me. She eventually looked for me to ask if I would be in her wedding. She found the husband we prayed for since we were children somewhere in the Christian microcosm of our secular school. I told her I couldn’t. It would be way too close to something sacred. I feared I was a powder keg that could blow the entire thing open. I watched her new Jesus loving friends surround her in long shiny dresses holding sweet smelling flowers while I sat near the back and caught whiffs of a rotting heart with a hint of tequila oozing from me.

Over a decade passed and God brought our hearts and lives together through a cancer diagnosis for her and months of hospitalization for me. It was through words we joined our hearts again and like nothing had changed and everything had changed we were knit soul to soul again. I drove from Maryland to Virginia and met her outside the cancer center for a day of chemo. Two little girls. Deep brown eyes spilling hot tears down our faces. One with dark brown hair and another with a knit hat covering her bald head.

Since 2007 my Angie has been through breast cancer, a second bout of thyroid cancer, colon cancer and now metastatic breast cancer growing and spreading in other parts of her body. Cancer that should have killed her.

Since 2007 I’ve had seventeen surgeries and levels and durations of pain that should have killed me.

I’ve often prayed God would just heal her. Take me and let her live. She wants to live, and I hurt so badly I want to die.

We’ve never compared our suffering. Our walks and often crawls through days are nothing like we dreamed our lives would be. They are as different as they are the same. But we understand what it is like to look at every single thing through the lens of great loss with it reflected back to us as a gratitude almost no one else gets to fully know. We waste nothing. We take nothing for granted. Ever.

My years away from God mired in deep and unspeakable sin have given me such an assurance of saving Grace. I know my living for Christ is just a hint of the dying for gain. More often than not I’m ready to go. I sometimes even ask Him to take me home instead of asking Him what He has left for me to do HERE in the Kingdom of God on earth.

In stark contrast my dear friend is begging for another day, another week and another month. She aches for a full life here before the crown of glory. I see her struggle with the fear maybe her salvation didn’t stick, and there might be a thought or word or deed able to separate her from Christ’s finished work on the cross.

Yesterday Angie got the results of yet another PET scan. Her text straight to the point. The cancer has spread again, deeper and further. There will be more chemo, stronger chemo, more frequent chemo. And then a peek into her soul. “Heavy, heavy heart.” I carry her heart. I sunk to the bottom of the pit with her.

Later she publishes her news and her hope and faith on her blog, Spring of Joy. She writes of the “spacious place” she will dwell in Jesus as they “move forward, looking to Him because there is nowhere else to go.”

I tried to sleep. I tried to pray. I tossed and turned. I checked the clock. Midnight. I wondered if she was awake too. Should I call her? Does she know I am keeping watch for so much longer than an hour. I am keeping watch until we find our way home.

I woke this morning exhausted. The time I slept I was dreaming. Nightmares. Cancer had a face. It was the powers of darkness shrouded in white lab coats and IV poles with bags of poison. I got my family off to school and work. I went in the bathroom and threw up. I cancelled my own appointments. I have to sit in this today. I have to wrestle with my God. I never ask “Why?” anymore. I’ve seen too many beautiful things born of suffering. What I’ve finally learned to do is ASK for something. Get on my knees. Stay on my knees and beg for a different outcome. “Your will be done on earth as it is in heaven” comes last not first. Kingdom. Power. Glory. Yes, God, all of this. But first I am going to ASK for you to stop the cancer. Turn the tides a different way. Make it shrink. Give her longer. I’ve seen miracles. I know for sure there is nothing too hard for my Jesus.

Will you ASK with me? Please pray for my Angie. Pray for her husband Brian and their children, Asher, Micah and Audrey. And if you wake at midnight remember this is when cancer is the loneliest and ASK again.

Midnight Cancer
By Mary Braddish O’Connor from her collection “Say Yes Quickly.”

Midnight Cancer
is a bottomless pit
where voices echo
around and around
endlessly
repeating the same
prayer:
oh
God
why
me?
Sooner or later, midnight
cancer changes to
morning
cancer,
brighter,
more hopeful.
Somewhere in the sun
rises warm and round.
Birds are singing.
After a while,
morning cancer melts
into afternoon cancer
where it hides among chores:
cut the grass
clean the downspouts
drain the noodles.
Later, the house falls silent
and even the dog is asleep.
There might or might not be rain.
Without a sound
you are falling,
arms wide and circling.
It’s midnight
You have cancer.

Aug 27
2015

Howard Hughes and Things I’m Missing. Gauntlet Story Feast

by Monica

This is a repost from December 2011 following my first neurosurgery. I’ve been trying to write something about my recovery from this most recent fusion, my seventh neurosurgery in four years. I am dealing with more disability, or as my counselor says, “different ability,” than ever. I have adaptive equipment to help me put my socks and pants on. I am thirty-nine years old, and the fusion I have now will not heal into a better place. I am stuck. The grief. The loss. The crying. It has been very difficult to write about. As many time as I’ve born my heart to you here, I feel like this is the ugliest thing I could show you. It’s important because it’s true. I know people read this blog for many reasons, but my target audience are people like me. They already know there are two sides to this journey. They know you can Hope in razor sharp suffering because it is our only option if we want to live.

This is a more humorous post about things we deal with in the Gauntlet. I hope you get a giggle. I also hope if you can showered without pain and dressed yourself today you feel a little more gratitude for simple independent things you may take for granted. If you are sitting in traffic or picking up your children from school in the annoying car rider line I hope you say Grace. If you can get groceries or clean your toilets try to be thankful. These things are lost to me, and I’d give almost anything to reclaim them.

Howard Hughes and Things I’m Missing
By Monica Kaye Snyder

I think I’m maybe just a little grumpy today. I figure I’m entitled to have a day or two when the barometric pressure reminds me this surgery is not a total fix for the complex medical issues I have, some of which will be a life long struggle for me, and I still just let myself go to a discouraged place for a little while. I’ve been trying to hard to focus on all the amazing positive gifts God has given and the healing. If I’m totally honest, I’ve even been playing the Pollyanna “glad game” to try and keep my mind/body connection moving in a forward direction.

I woke up this morning to cold rain and my head hurts. Thank goodness, it’s nothing like before, but still really bad, especially where those crazy screws were in the top. I think I’m still miffed I just never realized they were going to screw my head to something. How could I not have known that? My joints hurt. This is my EDS. I cannot be cured of this or even have it “fixed” in some way by a surgery. I will see the geneticist in Cincinnati in February to discuss management and possible treatments to help me deal with this ongoing pain. But realistically it’s just something God has asked me to do. Much of the widespread pain I had before my recent surgery has resolved, especially the neck and shoulder pain which was unbearable and crippling. I was cautiously optimistic because of all the drugs I have been taking. As I have been working on dialing back the medication this week, I still feel so much better overall than I have in years. This is good. Very good.

I think it’s the annoying little things about my recovery and new “disabilities” that I’m finding hardest to cope with and maybe just a little bit of loneliness for my husband and my kids and my space. Yes, I even miss my basement home and “bomb shelter” bedroom over this gorgeous light filled space, because it’s where my people are.

I thought I’d make a little list of things I miss. Maybe it will help ME to appreciate them if and when I ever get them back but maybe just maybe it will make YOU feel more sane and more grateful today and even make you laugh a little which is the best medicine, right?

1. Shaving. This is not a random choice for number one. I have not been able to shave since the morning of my surgery. I am Howard Hughes in sooo many ways and hair removal tops my list of OCD issues. I cannot in any way move my neck and head and body to shave. Last week when Dan was coming for date night I thought I would at least try to shave my armpits. To my horror I realized I cannot look over to the right and left enough to even see them. This is a problem, people. short of beginning a fund for laser hair removal or finding a stranger to come wax me periodically because a friendship would clearly be ended over this kind of interaction, I am in trouble. BIG trouble. I spend a lot of time thinking about how to solve this problem . . . SOON.

2. Tweezing. In the same vein, but also a critical part of my hygiene, I tweeze daily. I tweeze my eyebrows and any random facial hair and my one genetic chin whisker that pops out without warning. Again, I cannot move my face or head or hold a hand mirror or in any real way get this properly accomplished. It is making me crazy! At home I would climb up on our bathroom sink criss cross applesauce and tweeze. My husband and kids know if mom’s in the bathroom for more than a half a minute and if the door is locked this is my “me” time. One of my requests to Dan if I ever become a “vegetable” is please, oh please, have someone come and tweeze me. Last night I even forgot I cannot look down at my own body and see my own boobs. I was worried. Don’t worry, I don’t have “hairy” boobs, but you know how every once in awhile there is a hair that appears and needs to immediately be taken care of. It’s something women in our culture don’t just do. We take it seriously. We don’t speak of it even amongst ourselves, but it has to be done to keep the civilized world running. Well, I’ve outed us. Things are spinning out of control.

3. Caring for my feet and toenails, oh and clothes. I should have gone for a pedicure before surgery. It’s not like I could really even hold my head up or felt well enough to care but now I do. I would ask someone to drive me to get one this second. I would spend money to have someone else fix these rough feet with nails too long and polish grown out except for the above mentioned issue of unshaved legs. I would be too embarrassed to have anyone near my feet and legs to let them do my toes. Add on to this not wearing anything besides sweats and pajamas, ugly flat shoes and a pony tail for months and a self image problem emerges. Yes, I am so much more than clothes and hair and toenails too, but I’m the classic beauty, right? For years I have worn timeless clothes and beautiful scarves and simple jewelry which everyone wondered how I could afford when the truth is I probably bought them at least five years ago when I could afford them, but they are gorgeous still because they are classics. I haven’t bought real clothes in a very long time. I really want to be pretty again, not in the vain sense but in the “her clothing is fine linen and purple” way. Oh, and I bet that virtuous women had trim feet. I’m just saying.

4. Driving. I drove very little for months before my surgery because I had passed out a few times and frankly after seeing the 3DCT of what my neck looked like when I turned to the right or the left I realized I was most likely putting my own life and the lives of others in danger by continuing to drive. Not to mention I could barely get out of bed anyway, and we only have one vehicle. I have been home bound for so long you would think this would be further down the list but I REALLY miss being able to go putz for an hour at Marshalls or go to the grocery store and pick out what I want to eat. I’m so tired of wasting so much time browsing online sites for little Christmas stocking gifts I could just get at Walgreens if I could only go there. I wish I could pick Delaney up from school or take Danica to Chic-fil-A. I’ve had my driver’s license since the day I turned 16, and I have always associated driving with freedom and the ability to escape any situation when I need to but also make something happen when I want to. These things are gone now. I do not know when I will be allowed to drive again or how easily I will be able to with my new “range of motion.” I think about it a lot. If I get special big new “old lady” mirrors don’t laugh.

5. Drinking. drinking alcohol is a Christian liberty issue I’m in no way prepared to address here and certainly don’t want to get private emails or facebook messages about it. If I cause you to stumble dear brother or sister, I am sorry, and we can address that in a different forum. Technically it has been months since I’ve had anything to drink so it’s a non issue right now. That being said, oh how I miss having a glass of red wine. It makes me almost cry. Anyone who knows me well knows I always had at least a split in the fridge because at any moment something might need to be celebrated. Life and champagne are friends that must hold hands often. I really want to “Cheers!” something soon.

6. Cleaning. This is a little sick but then again if you’ve read this far you get the picture. I am desperate to clean something. It really hurts me to want to do this so badly and truly be physically unable. Now that I’ve been living here two weeks I’ve figured out how to swiffer the hard woods for “exercise” to avoid blood clots and yes, may empty my bathroom trashcan EVERY morning, but I want to vacuum and dust and clean my toilet, and I can’t. My own family has been taunting me about how they are living the life over there. Delaney tells me, “Dad let us make a big fort of blankets and pillows and animals and then we just went to bed and LEFT IT THERE.”

7. Tucking my girls in. Listen, all this other “coo coo for cocoa puffs” stuff aside, if you get to be there every night to tell your kids you love them, sing to them, read to them and tuck them in knowing they will be the first thing you’ll see in the morning, thank God. Don’t rush through it no matter how tired you are. In all my years of illness and pain this is the one thing I always pushed myself to do. It is the thing my girls are sure of. It’s the thing I will do long past when they want me to and the thing I’ll cry about every night after they leave for college or whatever else God might take them away from me to do. I snuggle in and talk to them and ask them questions about what made them happy or sad that day and we pray and we pick a sleep playlist, and I stroke their hair or rub their back, and they know, they know without a doubt, they are loved and safe and no matter what it’s going to be alright.

And you thought I wasn’t going to make you cry today!

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.

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.

Aug 25
2015

Calm Seas. Raging Storms. Father Love

by Monica

“For I know that the Lord is great, and that our Lord is above all gods.
Whatever the Lord pleases, he does, in heaven and on earth, in the seas and all the deeps.
He it is who makes the clouds rise at the end of the earth,
Who makes lightnings for the rain and brings forth the wind from his storehouses.”–Psalm 135:7

It was the first morning of worship at Laity Lodge during The High Calling retreat last November. Laura Boggess read aloud Mark 4:34-39 in the contemplative style called Lectio Divina. The soft lilt of her voice with a slight West Virginia dialect slowed my breathing and focused my mind on the syllables of a well known story as they rolled off her tongue.

That day when evening came, he said to his disciples, ‘Let us go over to the other side.’ Leaving the crowd behind, they took him along, just as he was, in the boat. There were also other boats with him. A furious squall came up, and the waves broke over the boat, so that it was nearly swamped. Jesus was in the stern, sleeping on a cushion. The disciples woke him and said to him, ‘Teacher, don’t you care if we drown?’ He got up, rebuked the wind and said to the waves, ‘Quiet! Be still!’ Then the wind died down and it was completely calm. He said to his disciples, ‘Why are you so afraid? Do you still have no faith?’ They were terrified and asked each other, ‘Who is this? Even the wind and the waves obey him!’

(I cannot confirm through research or otherwise what version of the Bible Laura read from. I know it was not exactly what is above, a direct quote from the New International Version, but the words below are identical to what I journaled in my bright green Moleskine during contemplation.)

*Leaving the world behind
*Just as He was
*Asleep on a pillow
*Peace
*Be still
*Completely calm
*Why are you so afraid?
*Faith
*Who is this?

It was June, 2009 when we last saw the shores of the Atlantic. Delaney was six. Danica was eighteen months. A few weeks before leaving we realized something was horribly wrong with our baby, but the trip had long been planned. We went anyway. I will never forget how each mile of Route 12 seemed like one hundred as Danica screamed in agony in her car seat. Every single photo from our week shows Danica with a crooked head and neck wincing in pain and confusion. Through the years we have begged God to redeem that trip to Corolla in His time. He did this through the love of dear ones who have carefully watched our struggle and wanted to make some kind of respite happen for us all in a place we longed for and needed to return to.

The last week of May God made a way for my family and I to literally and figuratively “go over to the other side.” We left this life behind and took a real vacation to the Outer Banks of North Carolina. Our time was sacred in every way. The seven days we spent together were our happiest in at least six years.

The week was peace.
The week was still.
The week was completely calm.

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 too much. I read too much. I pray too much. My heart touches too many lives that suffer and break without even a hope of a beach vacation. I never once thought this was anything but pure gift.

This is what Grace feels like. This is what Grace looks like. This is what Grace lives like.

My June surgery was all scheduled. We knew this week was in all reality the sum total of our summer fun. I spent the days taking continuous amounts of medications to fight the pain and feel the best I could to enjoy my family. I am always more well in the sun. I am always more well near water. I am always more well away from Ohio. I made a conscious effort to not even once say to my husband or children, “I have a headache.” I didn’t tell them about losing feeling in my fingers or my hands and feet going numb. I wanted our time to be about who we might be. I wanted it to be about who Dan and Delaney remember I once was. I wanted to know somewhere deep down inside I had the capacity to taste and see unfiltered good. There were minutes and even hours of this kind of clarity. It fueled our hope. For too long it has been deferred and made all of our hearts sick.

During our time we didn’t have a drop of rain. The seas were calm. The temperature perfect. It was like the great big God of the universe, our Father God, planned the weather for just us. We were sleeping on a pillow in the stern of the boat. We were resting. We had no idea here in Ohio there were several huge storms including high winds, hard rains and strikes of lightening. The same God who gave us peace also allowed a huge bolt of lightening to hit a very old and tall tree behind our home and split it down the middle. It did not just fall. The water inside the tree conducted the electricity and caused a bomb of sorts. It’s hard to explain unless you’ve seen something like it. It threw shrapnel chunks of the tree from the woods behind our home over our house and plunged deep into the front yard. One strike and the tree exploded. It was Tuesday night of our week away.

My father was coming by daily to check on our house and check the mail. When he arrived Wednesday afternoon our neighbor came running out to explain the war zone and show him the worst of it. Half of the tree split down the middle was hanging over their fence, into their yard, threatening their home. Another storm would most likely cause great damage to their property. He didn’t call us. He didn’t text us. He got on the phone with homeowners insurance and determined because our home wasn’t damaged they would not cover anything. He called several tree companies. A few would not even take the job. The position of the tree and the almost impossible way you could access it with necessary machinery would make the job a financial loss and risk. Finally he found someone to bring a crane up our neighbor’s driveway into our yard and do the difficult job of taking down the entire tree to the stump.

As we flew back into Cleveland Saturday night we hit lightening and bumpy storm clouds. We drove home in torrential rain. I held my head filling with pressure and pain and cried. I was thinking, “God, don’t you care if I drown?” I can’t live here. I can’t do this. Sunday morning Dan went out to try to mow our grass in between bursts of showers. He came in and told me in the most serious tone, “Someone stole one of our big trees while we were gone.” I laughed and explained how ridiculous that was. He then began to worry something bad had happened, and we would get some crazy invoice for it. I told him to go knock on the neighbors door and just ask them. He came back with a story I could hardly believe. My parents texted that morning asking if they could stop by after church. The photos and videos my dad showed us were astonishing. When we found out how much it cost to take care of the situation we went numb. $2800. I felt like throwing up.

Over the next day or so I looked up all the verses I could about lightening. God could have made that lightening strike any tree. We have a dead tree that is threatening our home, and we haven’t had the money to have it cut down. Why not that tree, Lord? What purpose did this storm have in our lives, my father’s life and the lives of our neighbors? I then thought of the passage from Mark. I reflected on the great love of my earthly father showing discernment and love by not calling us at all. He stepped in and took care of the disaster knowing we needed to rest. He paid the price knowing we did not have $2800. He loves us so much he did this sacrificial thing that pointed us to Jesus. At the very same time our Heavenly Father calmed the literal seas. He gave us peace. He reminded us who He is.

Today is my earthly daddy’s birthday. I celebrate him in new ways each year. Our relationship grows more pure as we both get deeper in our walks with God. I realize how very like him I am. When I look back across the landscape of our Gauntlet years I am brought to my knees remembering the countless ways he and my mother have done everything they could to love us and support us. We have come to trust them with our hearts and our storms. My father will do anything he can to calm the seas for me. He counts my husband as a son. He loves my daughters perhaps even more than he can love me, because that’s what love on top of love does. Most of all he points me to my abba God.

Calm seas.
Raging storms.
Father love.

All Grace.