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

Broken in Aspen. Again



One hundred thirty-nine days since my last surgery.

Seventy-two days since my last plasmapheresis treatment.

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

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

This is the year. I’m sure of it.

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

This is definitely the year.

Without warning something snaps.

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

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

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

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

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

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

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

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

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Drain it. Kingdom Giving. Kingdom Living



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

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

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

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

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

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

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

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

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

Photography by Cindee Snider Re. Used with permission.

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Dear Mom. A Letter from Delaney


“I heard once that the average person barely knows ten stories from childhood and those are based more on photographs and retellings than memory. So even with all the videos we take, the two boxes of snapshots under my desk, and the 1,276 photos in folders on the computer, you’ll be lucky to end up with a dozen stories. You won’t remember how it started with us, the things that I know about you that you don’t even know about yourselves. We won’t come back here.

. . . I think about your futures a lot. I often want to whisper to you, when we’re tangled up together or I’m pinning your poetry to the bulletin board or repositioning the pillow under your head so you don’t get a crick. ‘Remember this. This is what love feels like. Don’t take less.’ But what I end up saying is ‘This was my dream. You were my dream.’ I’ve said it too many times though; now when I look at you all soft and gushy and say ‘Guess what?’ You say ‘This was your dream. I was your dream.’–Kelly Corrigan, Lift

Laney Trees

Every mother bears some kind of false guilt. There is no way we can live up to the expectations in our heads and hearts telling us all we are supposed to be for our children. For a sick mother, especially a chronically sick mother, the real or supposed guilt comes in constant waves. Not an hour passes that some kind of message from the world doesn’t remind us of how we are failing.

I have written privately to my girls since they were in my womb in journals I will gift them someday. Dan too keeps a journal to them. We have amazing little rituals like writing notes to one another, especially if we are mad, sad or sorry. We have a treasure box where we keep them all. I know there are so many things we share that busy “soccer moms” might never get to with their kids. We snuggle a lot. We read and talk about what we read. We collage our visions and hopes and prayers for the seasons in our lives. We pray. Since writing “Gauntlet With a Gift” I have had this fresh perspective on the gifts that are wrapped in ugly packages like chronic illness and pain. I do believe our slow life, early bedtimes and lots of talking and listening to one another has shaped us. The compassion I see growing in both my girls for me in my suffering is forming their character.

I’ve also written public letters to my girls on Team Danica. This is a little snippet of one I wrote to Laney during my brain surgery year:

I’m sorry. I ache to give you the normal ebb and flow of life. I am so sorry I can’t get out of bed so many mornings and you always have to find me lying down. I long to be the fun and energetic mom you want. I wish I wasn’t always so tired and on edge and just plain grumpy. I have felt like we are all on autopilot for so long just to get through. So many important things I want to do with you I have not. So many things I’ve said I wish I could take back. So many things I wished I had said, but I never did.

At the end of every day I crawl into bed with you. We read or watch old episodes of Andy Griffith or The Waltons. We pray and then snuggle and chat while “Sleep Sound in Jesus” plays. I see you cling to me, your mommy, no matter how many times we have tussled during the day. Tonight you looked right at me. I am so haggard and tired and broken. You asked, ‘Mom, Do you remember what you looked like before?’ It hurts me, but I understand. Danica still looks at me the way you used to, like I’m the most beautiful woman in the world. I knew this would fade and you would begin to see my flaws on the inside and the out. I want you to know this is beauty too. This taking one painful step after another to care for you is love.

And here is one I wrote her after missing another Christmas program because I was so sick:

I am so proud of you. You have worked so hard at everything you have tried. You have taken all the responsibility for your heavy school load, extra curricular program and your music. You are thriving, Delaney. Even when you come home, and I have already clocked out for the day because of pain, you remain cheerful and helpful and loving to me. You meet me where I am probably more than any other person in my life. You never make me feel guilty or manipulate this very difficult situation. You still love to be with me when I am grumpy or sad. When I look in your eyes I know I have to keep fighting so I can see what happens next.

You are everything I dreamed you would be. You are kind. You are generous. You are brave. Oh my, you are so brave. You are strong like I wish I could be. You are wise way beyond your years. You are funny. You make me laugh out loud. You are crazy creative. You are bright. I mean like the sun. You are smart too. You are tough as nails but have the most tender heart. It’s a perfect mix. You are grateful. You are a leader. You know who you are. You know who God made you to be. You are so much more. You are the most.

When I look into your piercing blue eyes and try to count the cinnamon sugar on your nose and cheeks and when I kiss you on your head and touch the gold in your hair I still catch my breath. When I see you first thing in the morning, you are a bubble floating into my day. When I tuck you in at night, you are a perfect punctuation mark to all the good and bad and in between. When I doubt why God could have put me here. When I ask Him why He is keeping me here. He answers with you.

I love you Laney. There has never been a minute in your life I wasn’t carrying the awareness of the extreme treasure you are. I worry sometimes that you won’t know how I feel. I feel afraid I can’t love you well enough because I am such a different kind of mom than most everyone else. That’s why I’m writing this now. Maybe someday I’ll be healthy again and will attend your daughter’s Christmas programs. Maybe I will be sicker or even gone, and you will have to navigate even more life without me physically present. However it goes, I need you to understand my heart for you.

It’s LOVE. Simple. True. Forever.

Last night Delaney brought me a letter. It was not a grandiose gesture. She had been asked to write a thank you letter to someone as a class assignment. She chose me. She spoke to me in my favorite love language, words. Every single reason I’ve felt sad or guilty about being a very sick mom for oh so long melted away as I read her genuine affection for me as her mama just the way I am. I never expected this from my twelve year old. Perhaps when she headed off to college or maybe on her wedding day or after she had her first child but not now. I certainly never expected her to be able to separate the wheat and the chaff from our complicated life and hold on to the good stuff like she so clearly is doing. I was blown away.

Dear Mom

One of the beautiful lines I’ve plucked from Joe Rigney’s book The Things of Earth: Treasuring God by Enjoying His Gifts speaks of guilt.

“False guilt kills true joy and ruins us for fruitful ministry . . . To feel guilty for something God does not regard as sin is itself a sin.”

Moms, read this again.

“False guilt kills true joy and ruins us for fruitful ministry . . . To feel guilty for something God does not regard as sin is itself a sin.”

I am the mother God chose for Delaney and Danica. As my friend Jennifer Dukes Lee would say, “I am PreApproved!”

Do you ever feel like God must have gotten it all wrong when He chose you as the mother of your children? Do you feel inadequate? Do you feel guilt? I’m here to tell you it’s just not so. You are perfectly matched with the hearts and lives of the children He wants you to love. Lean in to the fruitful ministry of motherhood. It may not look anything like your dreams for motherhood or like your best friend’s journey as a mom, but you are finding your way and your children are okay. Your children will be okay. And one day they will “Rise up and call you blessed.”–Proverbs 31:28

Photo by Grace Designs Photography

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Whiter Than Snow


“Wash me and I will be whiter than snow.”–Psalm 51:7

Snow free

I woke to a fresh covering of snow this morning. The ugliness of dead, rotting leaves and plants are camouflaged by thousands of intricate crystals knit together as a huge white blanket over the landscape.

My mind recalls the Scripture I’ve known since I was a child comparing snow to the forgiveness of God.

“‘Come now, Let us reason together,’ says the Lord, ‘Though your sins are like scarlet, They shall be white as snow; Though they are red like crimson, They shall be as wool.'”–Psalm 57:1

This snow will melt. The unsightly winter will be bare again, but in Christ’s blood my sins are not just covered for a day or two or even a season. They are completely wiped away. No past sin will be dredged up and no future sin will melt away the forgiveness offered by His sacrifice for me. IT IS FINISHED. His work is done. My salvation is secure.

I am like a child SET FREE on a snow day. I find peace and rest in the wonder of a salvation I had no ability to seek or find on my own.

It is Gift.
It is GRACE.
It is my scarlet made white.
It is my liberation.

I’m quietly writing over here today about my Rahab story.
The shackles are gone.
I am free.
My God, my Savior rescued me.

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One Word


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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Laundering Wishes


“Wishes of one’s old life wither and shrivel like old leaves if they are not replaced with new wishes when the world changes. And the world always changes. Wishes get slimy, and their colors fade, and soon they are just mud, like all the rest of the mud, and not wishes at all, but regrets. The trouble is, not everyone can tell when they ought to launder their wishes. Even when one finds oneself in Fairyland and not at home at all, it is not always so easy to remember to catch the world in it’s changing and change with it.” ― Catherynne M. Valente, The Girl Who Circumnavigated Fairyland in a Ship of Her Own Making


It’s a sunny New Year’s Day morning. Each of us woke on our own time frame. This is always gift. My “nest” chair is back by the window after taking down the Christmas tree and decorations yesterday. I am snuggled under my quilt with Twixie at my side, and my prince brought me a cup of coffee perfectly made the way I like it. After breakfast our family gathered around in the living room to begin the new year in our fifth year of making wishes.

Someone gave our family a beautiful silver ornament in December, 2010. It is engraved with the word “WISHES.” It hangs on a bright red grosgrain ribbon and opens to the words “DO COME TRUE.”

It was given to us in a year we had trouble imagining anything other than the hard day we were living. I had a difficult hysterectomy followed five weeks later by Danica’s second brain decompression and fusion. Danica was in a body brace and a wheelchair when we were finally allowed to leave the hospital. I had to quit my job doing database work for a company in DC to care for her 24/7. I made more money than Dan. My job was essential to our survival. We lived at my parent’s house the first month we returned from Cincinnati. Finally, we made the decision to return to our home for the holidays despite the challenges the stairs presented. During my hysterectomy my doctor found my colon infiltrated by endometriosis. He closed me up but told me I needed to see a surgeon at Cleveland Clinic. Instead of finding any relief from the first surgery my personal pain formed a crescendo compounded by the burden of lifting Danica in and out of her wheelchair and carrying her up and down our steep stairs. This was the first year we began to taste YOUR love for us. We were only able to go home for the next six months because of the support of many who knew our entire family could not begin healing without some months alone in our own space. We were able to stay until May, 2011.

We had been promised a Disney wish trip for our Danica sometime when she was well enough. New Year’s Day, 2011 we couldn’t fathom this happening. Four long months later Danica was given a release from her little body cage and her chair, and we planned our trip. Four weeks after my colon resection I was traipsing around Orlando trying to smile and keep the wish looking like a dream come true.

This ornament has become a family tradition. It is very special to look back at the one thing we hoped for in the coming year. We write our wish on a little strip of white paper with the year. The girl’s wishes have mostly been childlike. Two years in a row Delaney wished for a puppy. This finally came true! Danica’s wishes began like a three year old’s would. She wanted to meet the Disney princesses, and she did. Last year Delaney’s wish was also material as I would imagine an 11 year old’s would be. She wanted a cell phone. Danica’s took me off guard. She wished “for mommy to get better.” Every single year Dan and I have wished for the same thing. We want healing. Over and over again we’ve hoped for a year with less days hurting and more days living. 2014 was definitely a year of this.

We don’t share our new wishes with one another until New Year’s Day next year. My wish this morning was something completely different than healing, and I feel confident the rest of my family made laundered wishes too. Something has shifted in us all. We are changing and being changed. We are growing in faith and wanting first things. We are less cynical and more expectant. We have seen the goodness of God shine through every darkness. We have hope that is so much more than a wish. It is rooted in a belief God wants to bless us. He wants us to know Him more. He wants us to trust Him more. He wants us to praise Him more.

Bleached white wishes because of Jesus.

Do come true

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Nothing is ever black and white. A giveaway for zebra heroes


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


“When you hear the sound of hooves, think horses, not zebras.”

This phrase is taught to medical students throughout their training.

In medicine, the term “zebra” is used in reference to a rare disease or condition. Doctors are taught to assume that the simplest explanation is usually correct to avoid patients being misdiagnosed with rare illnesses. Doctors learn to expect common conditions.

But many medical professionals seem to forget that “zebras” DO exist and so getting a diagnosis and treatment can be more difficult for sufferers of rare conditions. Ehlers-Danlos Syndrome is considered a rare condition and so EDS sufferers are known as medical zebras. This identity has now been adopted across the world through social media to help bring our community together.

This morning I am keenly feeling my stripes.

My husband says I’ve had “rock star” access to almost every specialist you could find for my complicated Ehlers-Danlos condition. My neurosurgeries have been performed by arguably the most skilled and compassionate leader in the search for the most whole life for EDS patients. I see the best cardiologist. I’ve explored all the other aspects of this DNA mess including genetics, hematology, gastroenterology, mast cells, gynecology and autoimmune disorders. This list is not exhaustive, but it gives a small window into how systemic this disorder can be in some patients, especially those of us with mixed type EDS. Because of Danica’s early Chiari diagnosis and her first brain decompression failing I was thrust into a life of research and battles in a war I would have gladly given my own life for. I call Danica my first angel in this journey, because if it were not for her suffering and her bravery I may have never found my own diagnosis explaining the decades of pain I had already walked. I call YOU my second angels, because you helped my family and I untie impossible knots by listening, loving, praying, supporting financially and always Hoping.

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

I was one of the early ones in some of these groups. There were just a few zebras who had gone before me. Now, there are thousands and more are being diagnosed every day. The awareness is working. One by one our general practitioners are learning through us we do not just have fibromyalgia, migraines and psych issues. We are fundamentally broken at the cellular level in a way that affects every part of our bodies.

My old blog Team Danica had thousands and thousands of visitors because I was writing faithfully about our journey diagnosis by diagnosis in a narrative that explained this life in the reality of the pain but also through the lens of Hope. It documented the progression of comorbid conditions and the fight to see specialists who believed in their connection to EDS. Google search engines brought almost anyone typing in key words related to Chiari or EDS. People began emailing me and finding me on facebook and asking for help. I will admit in times when I was most ill I could not support all the people who needed help. I felt guilt but also sadness there was no place for them to go. A dear fellow Zebra created a private place on facebook called “Beyond the Measurement. Chiari, EDS, & Chiari w/EDS.” When I joined I know we had under 100 members. Today there are 2,609 members and exploding. It is a place of heroes rescuing heroes. I am proud of Robin Armstrong Griffin, her vision and the countless hours she donates to keep this safe and nurturing place going.

My book, Gauntlet with a Gift, will be the first book in narrative form taking a newly diagnosed person through the journey in medical diagnoses and specialists but also through the mental, emotional, relational and financial struggles we fight daily. It is a beautiful and sometimes unbelievable story meant first for my fellow warriors, second for the people who walk along side us trying to understand, and lastly for anyone wanting to be inspired by hidden gifts in a gauntlet of suffering that truly has no end in sight.

When I was in Texas on retreat one of the first people I met was a dear mom who has four children in the early stages of diagnosis and treatment. I was praying for affirmation from God about the direction of Gauntlet with a Gift. One of the reasons I wanted to attend this retreat was knowing Marilyn McEntyre was leading sessions. Her background in medical humanities made her a perfect resource for this work of love. Once again God answered exceeding, abundantly above all I could have asked or thought through this connection. The last day of the retreat, after we had spent rich time together on Saturday, she brought me her book Patient Poets. Illness from the Inside Out as a gift. She did not know I purchased this book from the Laity bookstore and had been pouring over it. I have already bought copies for friends and am giving one away here today. It explores the emotion behind our lives of pain and our fight for being just a little more well.

The past week I’ve spent time on many phone calls with people all over the United States looking for the wisdom I’ve gained because I am steps before them in this fight. I have directed two local woman referred to me from friends who are very sick and desperate for a real reason. I know they have connective tissue disorders. Last night I logically walked a friend through the next thing she needs to do. She is a woman who knows all I do but has less support and different circumstances making her battle more fierce. When you can’t lift your head off the pillow it’s so hard to do the next thing. I am also watching my younger sister finally realize she has many of the same conditions. Months ago I bought her an Aspen collar. She is waiting for a May appointment with my neurosurgeon. Every time I see her I feel a form of post traumatic stress, because I want to give her all the access I’ve had. Her story may look very different than mine. Knowing all I know I just want to hand her any relief I can.

I am feeling compassion fatigue. God is showing me the best and most beautiful way I can help is finish this book. This is why I stopped writing at Team Danica and moved here. It is also why at the beginning of the year I will have to turn off notifications from the support groups, silence my phone and do the very hard work of retelling our story along with detailed medical information and vignettes of the caring physicians and other patients who have saved us, all heroes untying our knots.

I was blown away by the nominations posted in the comments of my Big Box Giveaway. If you haven’t read them take a stroll over there. I know I said no more giving this year, but I was inspired to do one more after all the talks I had last week.

Included is a beautiful piece of Kelly Rae Roberts art framed and behind glass with the message “I choose hope.” A copy of Marilyn Chandler McEntyre’s book Patient Poets, mentioned above. A Zebra mug like the one my sister recently gifted me. It has a zebra on the front and our motto on the back, “Nothing is ever black and white.” Also my favorite Tazo tea, Joy. a perfect blend of black and white tea and a little zebra ornament for the tree. Oh how difficult the holidays are for us!

Here’s how to enter for the special zebra gifts you see here to be mailed to one of your own heroes.

1. Comment below on this post about an EDS or Chiari hero who has inspired you and helped untie your impossible knots. I will be randomly choosing a winner after midnight Thursday so I can mail this care package on Friday.

2. Many of you are personal friends on my Monica Roberts Snyder facebook page or followed Team Danica. Click on the facebook link at the top right of this blog and “like” my new writer page. This is where you will get updates on the progression and publication of Gauntlet with a Gift. Subscribe to receive new blog posts by email on the right side of this post.

3. Share this with your zebra friends! Our Hope remains!

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Praying Circles. Coming Full Circle at Laity


“Don’t let what you cannot do keep you from doing what you can. Draw the circle. Don’t let who you are not keep you from being who you are. YOU ARE A CIRCLE MAKER.”–Mark Batterson


The Circle Maker. Praying Circles Around your Greatest Dreams and Biggest Failures. By Mark Batterson

I read this book once before. It made an impact, but I shelved it away under good stuff not applicable to me right now. Maybe it was my heart at the time or maybe it was because I could barely walk and would pass out on my knees so praying had to come in a less literal way. More likely it was because I was raised to be afraid of asking too much of God. Sure, in Acts He did some crazy awesome stuff and the Holy Spirit was spreading like wildfire. Now, not so much. Stay calm. Stay in your seat. Bow your head and very gingerly approach His throne.

It was before Danica’s miracle was realized. It was during a time I spoke about Hope and healing but in the deepest part of my mind and heart believed the intense suffering and loss we were walking was His will for my family and I. I didn’t think I needed to pray my way out of it. I just needed to pray to be more submissive in it.

Thankfully I had a bunch of circle warriors around me. People were up on their feet and down on their knees begging God to bring healing to my daughter and I. They were so believing in God’s power to do this thing they invested in our lives financially in a way I’ve never heard of before. They sacrificed to feed us, clothe us, give us shelter, pay for medicine, pay for gas and hotels and brain surgeries. When they couldn’t give anymore they asked their friends and family to give. One friend even drained their bank account because she wrestled with God all night about what He wanted their family to do for ours. This is crazy, right?

My sister Rochelle is one of my best circle stories. She would stay up nights begging God for salvation from the pain. She wrote ridiculous letters to people asking them to give us a place to live when my parent’s basement was making me so sick and the dark room I laid in was slowly killing what little light I had left in my heart. She came for surgeries when arranging her life to do so was short of impossible. She called me every day and talked me through hours of weeping. She listened to my despair when no one else could. She was the only one I could say out loud to, “It hurts so bad I want to die.” She didn’t flinch. She prayed.

I brought this book back out a few months ago, along with a journal I had started to make prayer circles in. I had some big praying to do for people I love. As I read back through Mark’s stories and what he calls “back stories” of the huge things he asked of God and the ways God said “No” to make room for the many ways He said “YES” I reevaluated my prayer life. Everything looked different because I had experienced first hand this kind of power.

Prayer is a tricky thing for people who believe God is sovereign, which I do. If God has every single thing planned out already then just throwing out, “According to Your will,” should do the trick in most cases, right? No. Not at all. Here’s the number one reason why. God has made really BIG promises in His Word. When we fail to circle those promises and pray for them we also forfeit the miracles. They may still happen, but because we didn’t ask, the answers are often lost in some other explanation or not recognized at all.

I love how Mark’s book talks a lot about financial prayers. Money was needed for His new ministry in Washington DC. He prayed specific prayers about these needs. He talked about them. He made the need known in many cases. Then he walked around and around these prayers in literal steps of faith until God provided. Sometimes it was the provision of taking something away to make room for something bigger and more God honoring. Oh, how we have lived this truth. He also talks about resisting the temptation to manufacture your own answer. I think my sister was definitely at that point when she was calling people and asking for a free house for us. I still love she was that brave. In one of Mark’s stories about a generous gift given their church the givers said, “We’re giving this gift because you have vision beyond your resources.” In this same spirit we have been given gifts that were seen not just by us but by the givers as LIFE. It was a currency of living and breathing. They trusted us because we kept telling our story and making our needs known. They trusted God because they were prompted by the Holy Spirit and backed up their giving with really big prayers. As our provision grew so did our faith and our willingness to tell anyone who would listen about what God was doing. Many have watched this from the sidelines in awe.

Have you ordered this book yet???

My copy is underlined, page flagged and tear stained. I am getting somewhere with all this. Mark uses lots of Biblical examples from the Old Testament as he weaves through his own story. I’m super close with Moses for many reasons. I was just up in the gaps with him the other day. After the complaining people were tired of manna Moses went back to God. I’m sure he was ashamed and embarrassed they were grumbling again. I’m sure he felt like God had done His best work with this bread from heaven that showed up outside every day. Just enough. God asks Moses this, “Is there a limit to my power?”

“The obvious answer to that question is no, God is omnipotent, which means by definition, there is nothing God cannot do. Yet many of us pray as if our problems are bigger than God. so let me remind you of this high-octane truth that should fuel your faith: God is infinitely bigger than your biggest problem or your biggest dream. . . Our biggest problem is our small view of God.”

It was only this year, after a staggeringly generous gift loosened the vice grip of hourly panic about how our family would not only survive but continue to fight, I began to ask God in earnest for healing for myself. I could ask others to pray for me all day long, but I did not ask God for myself. It was only then God began to open up understanding about how no matter how much neurosurgery I had or what pressure we removed from my brain, I was fundamentally sick ALL THE TIME. It was also in this new treatment He resurrected the original call to write “Gauntlet with a Gift.” (Please don’t freak out about the word “call.” I can see some of you coming unloose. Simmer down.)

I began to pray in circles. My sister Rochelle needed a circle around her son and their family. My sister Alecia needed a circle around her own health and their family. My dearest childhood friend has cancer for the fifth time. Ohhhh, that’s a big circle. I started to draw more and more circles. I got more specific in my prayers. I asked bigger things, because I’ve seen him do HUGE things. There is no limit to His power!

When I arrived at Laity, now almost two weeks ago, I was swimming in a sea of circles. It was all private. I began using the term when I would talk to people and add them to my book, but I didn’t share too much of the changes going on in my heart. I would write their names and their family’s names and their specific needs in circles. It felt like something HUGE shifted in my praying and also my faith. Still, I was alone in this.

I was “fresh off the boat” when I crossed the Frio into the canyon. I was like an awkward first timer. It was certainly another lifetime since I’d been at a spiritual retreat. I think I have lost much of my “Christianese” in all my time away from community. In a way I’m glad for this. Still, I don’t quite know how to act when surrounded physically by the body of Christ. So, imagine my surprise when at dinner Friday night, with a strained vocal cord I quietly shared my story to a beautiful woman sitting next to me. She was moved. I’m not sure how it happened but suddenly I was surrounded by women, and they were literally circling me in prayer. Every one of them prayed specific prayers over my healing, my purpose at the retreat, the story I have to tell and God getting the glory. I was blown away. They prayed right through the clanging bell calling us into our evening session. I opened my eyes to question them. One said, “Oh this is more important!”

We went outside after the prayers ended and one of the women shining with Jesus pulled me aside and shared this passage from Isaiah 38 with me. If you don’t know about King Hezekiah you need to run and check his story out. At the beginning of the chapter it says he was “ill to the point of death.” God told him to get his house in order because he would die. He would not recover. I’m pretty sure if God sent me a real life prophet that said I was going to die I would make some funeral plans, hug my husband and girls and submit to it as God’s will. Hezekiah did something different. He turned his face toward the wall and as he wept bitterly he prayed, “Remember, Lord, how I have walked before you faithfully and with wholehearted devotion and have done what is good in your eyes.”

Guess what? His prayer changed God’s mind. Here’s that tricky sovereignty thing again. If Hezekiah hadn’t prayed this prayer would God have taken his life then? Did God plan for this prayer to open Hezekiah’s eyes all along so He would get the glory?

Listen to these beautiful words penned by Hezekiah himself after his illness and recovery:

I said, “In the prime of my life
must I go through the gates of death
and be robbed of the rest of my years?”
I said, “I will not again see the Lord himself
in the land of the living;
no longer will I look on my fellow man,
or be with those who now dwell in this world.
Like a shepherd’s tent my house
has been pulled down and taken from me.
Like a weaver I have rolled up my life,
and he has cut me off from the loom;
day and night you made an end of me.
I waited patiently till dawn,
but like a lion he broke all my bones;
day and night you made an end of me.
I cried like a swift or thrush,
I moaned like a mourning dove.
My eyes grew weak as I looked to the heavens.
I am being threatened; Lord, come to my aid!”
But what can I say?
He has spoken to me, and he himself has done this.
I will walk humbly all my years
because of this anguish of my soul.
Lord, by such things people live;
and my spirit finds life in them too.
You restored me to health
and let me live.
Surely it was for my benefit
that I suffered such anguish.

In your love you kept me
from the pit of destruction;
you have put all my sins
behind your back.
For the grave cannot praise you,
death cannot sing your praise;
those who go down to the pit
cannot hope for your faithfulness.
The living, the living—they praise you,
as I am doing today;
parents tell their children
about your faithfulness.
The Lord will save me,
and we will sing with stringed instruments
all the days of our lives
in the temple of the Lord.

How I have studied through Isaiah twice in my life and never grabbed on to these verses before I will never understand except God had this circle intervention planned long ago, and His word became ALIVE in this setting, in this time, for a purpose I could not have lived until now.

I will tell this story hundreds of times I’m sure, because it was just one of the gentle ways God meant for me to enter back into real community as I am made more well. I wouldn’t have trusted this in a church setting. God knew this about me.

There’s another amazing story coming soon about the circle I drew around my book, and the stunning way God began to answer in the Texas Hill Country, but I will save that for another day.

Do you believe there is no limit to God’s power? If so, how should this change your prayer life? I’d encourage you to sift through your Bible for the larger than life stories of answered prayers and then look around. He is the same God. Nothing has changed. He is still doing BIG things for our good and His glory. Let’s pray some circles together!

(Thanks to Tim Miller for taking this stunning photograph of the Ebenezer I built Friday afternoon and to Cindee Re for the gift of the cross. “Thus far the Lord has helped us.” As I write tonight I have horrible intracranial pressure building. I write these believing words in a broken body made up of glitches in my DNA strands that scream in the face of long lasting relief from my pain. The difference is I am asking. I’m asking BIG. I need to be well enough to finish this book. Will you ask this for me as you pray?)

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Paying the Rent to Write



I had business cards printed in honor of launching this new place anticipating connections with people in the publishing world as I finish the book I am currently writing. I planned to order some “real” ones cohesive with my brand when this site went live. For the interim I had a sweet little design printed on beautiful card stock. They are perfectly me. If you didn’t already know, quality paper is like good thread count and great champagne. If you’ve never touched it, slept on it or drank it you’ll probably make it through life just fine, but once you have you’d pretty much sell your soul to make them yours. I always have a stack of books nearby and the red glasses are just smart, so I thought ordering fifty of these cards would give me something to hand out at Storyline. When it came to a title I was stumped. Who was I going to say I was? What is it that I do?

Am I am blogger who wants to be a writer? What is the difference? Am I writer who wants to be an author? Are you only an author when something is published on good paper? When did all this become so confusing and the lines this blurred?

Remember when you uncapped your Le pen in the coolest color and just let it slide across the smooth empty pages of your journal or notebook without any hesitation? There was no world wide web. We were not pushing “publish” on any and every thing pouring out of our minds and hearts. Our words were sacred, sincere and safe. We kept them like a treasure map back to our true selves knowing for sure we would need them again someday. At a young age we already felt the propensity to lose our way and betray our own confidence for false desires so we wrote like mad.

I love this passage from Annie Dillard’s “Teaching a Stone to Talk: Expeditions and Encounters.”

She is nine, beloved, as open-faced as the sky and as self-contained. I have watched her grow. As recently as three or four years ago, she had a young child’s perfectly shallow receptiveness; she fitted into the world of time, it fitted into her, as thoughtlessly as sky fits its edges, or a river its banks. But as she has grown, her smile has widened with a touch of fear and her glance has taken on depth. Now she is aware of some of the losses you incur by being here–the extortionary rent you have to pay as long as you stay.

Did I really want to pay soul currency to tell my story? I had this very real opportunity once. When it came time to sign my words over to someone I didn’t know or trust I ran fast and far away.

I began a blog in 2008 to show my family the cute pictures I took of my girls and keep track of some daily gifts. I’d been through a wicked pregnancy and moved to Ohio from the Washington DC area not long after my Danica was born. I went from being Director of Marketing for a real estate development firm to writing SQL code in my pajamas day and night. In between changing diapers, doing flashcards with my five year old and crying (there was so much crying), I continued to write the whole truth free hand in my journals. Oh, and I may have kept a bottle of vodka in the freezer too. It was just for really hard days, I promise. I went from wearing beautiful suits and amazing shoes while carrying my Louis Vuitton bag into fabulous lunches at swanky spots like The Hay-Adams to a desolate place I never in a million years thought God would be so cruel to ask me to live again. The old blog is still published out there. I named it “Every Day Simple Abundance”.

There were only two blogs I regularly read during this time. I followed my childhood friend Angie’s blog, Spring of Joy and this other little place where I met Jesus every day at the foot of the cross. A few of you may read there now. It was Ann Voskamp’s, A Holy Experience. It was small and quiet, tucked away on a farm in Canada, and I think just a few hundred in the whole world were faithful readers then. I like places like this. I’m suspicious of anything that grows too large. I don’t care for big crowds or lots of acquaintances who aren’t really friends, and I hate a bandwagon. I believed pure things are not for the masses and any road into the Kingdom of God has to be narrow with a tiny gate. “One Thousand Gifts” didn’t seem like a stretch to me. I began keeping a gratitude journal in 1999 when I read Sarah Ban Breathnach’s book “Simple Abundance” after seeing her on Oprah. Although I was far from God at this point of my life I will tell you the act of writing God’s common grace to me day after day was perhaps the single most important thing bringing me back to saving Grace. Some days I was just writing Maslow’s hierarchy of needs. Over and over again I was thankful for food, drink, shelter warmth and sleep. When I began to read Ann’s words regularly I know for sure it was God’s way of pouring truth back into my heart after years away from Him. It was in fact “revolutionary”. It turns out most of the world was craving this discipline of gratitude as much as I was.

In 2009 when Danica was eighteen months old her neck went crooked. I continued to blog through some hard months of looking for relief for her pain and diagnosis, but I mostly hid. I sat at her door at night and pled the blood of Jesus over my daughter who would scream herself to sleep. In September 2009 we heard the word “Chiari” for the first time, and it changed our world forever. It wasn’t until after her first brain surgery in November 2009 failed we knew we were facing not just a battle but an all out war. I began writing at, also known as

I have faithfully written there for over four years. I’ve paid some high rent as I bore my soul to anyone who would read. Many began to find my little blogger spot because themselves or their son or daughter were told they had Chiari too. As our story unfolded I was diagnosed as well and years of physical pain began to make sense. People cried with us, prayed for us, gave to us and carried us through a long dark tunnel of cruel suffering.

Elizabeth Barrett Browning wrote, “God answers sharp and sudden on some prayers and thrusts the thing we have prayed for in our face, A GAUNTLET WITH A GIFT IN IT.”

This is my book.

“Gauntlet with a Gift.”

I am seeing some kind of light at the end of a tunnel.

I am ready to talk about the gift more than the gauntlet.

This is why I needed a new place to write.

It will be different. I will still write about our life and the health challenges I mention in my biography, but I will give you glimpses into the windows of what has sustained me during this journey. There will be beautiful words, music, poetry, good books, great stories about other overcomers, and gifts. I mean the real kind too; care packages from the best friend you always wanted.

I’ve decided I’m a blogger, a writer and an author now.

I hope you’ll sit on my comfy sofa in a patch of sunshine and make yourself more than my acquaintance.

I have changed my mind about how big God is and the way He uses the small, weak things of this world to grow His kingdom. I’ve seen a camel pass through the eye of a needle. I know for sure the gifts are there even when we can’t quite make out the shape of them yet. He’s answering the prayers, even shoving them in our face if we would only SEE.

Open your eyes with me. Walk along side me. I feel a light. Let’s head that way together.

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