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Dec 19
2014

Hello Courage

by Monica

“But now you must be strong and not let your courage fail.”–II Chronicles 15:7

There was very little sleep last night. The intracranial pressure so bad I had to focus on not throwing up. I tried not to cry. This makes the pain worse. My legs twitching kept me restless. My joints burning made every move agony. My mind and heart assaulted by fear and anger and self pity. This is what happens when fighting for treatment takes weeks from sudden onset. All the ground I feel I’ve covered towards healing and happiness is swallowed by more despair.

When I can’t pray I turn to music. Playlists of hymns and spiritual songs fill my thoughts with truth of God’s faithfulness and love and turn my eyes towards Jesus. I also turn to Scripture I’ve memorized. Reciting the promises of God bring my intense fear into perspective.

This morning I pushed my body out of my bed to get Danica ready for school. My head feels like it might explode. I believe this is not because perhaps my shunt isn’t working or the changing pressure due to weather but because my brain is swelling. All these things combined create the perfect storm of suffering. Dan rose very early to take Delaney to school for a field trip to Columbus. The roads were slick. He returned to make coffee and Danica breakfast, and he oozed fear. Everything our family has been through breeds this feeling that the worst will happen. We wrap our children in a bubble wrap of sorts that others cannot understand. Danica’s first words to me were about how her head and tummy hurt. I wanted to keep her home but how could I? She missed her Thanksgiving party and her Christmas program from illness. Her little heart was longing for her first grade Christmas party. She won’t have a parent there. Again. She said as she walked out the door with Dan in her swishy gold skirt, “Mom, I want to stay home, but I want to go.” How could I keep her home knowing I need to have my cath placed today and perhaps even have my first treatment?

My dad is on his way to get me. I am terrified of this puncture and placement. I am heartbroken this is happening to my family and I the week of Christmas.

I read this from Elisabeth Elliot in my quiet after everyone left.

Fear arises when we imagine everything depends on us. We assume burdens God never meant us to carry. How much better to take whatever is troubling us immediately to God, confess our helplessness and perplexity, and do the next thing.

Today I will do the next thing. Will you please pray I will lay my burdens down and rest in His faithfulness and great love for me? Will you ask God to comfort my husband, protect my children and give us all comfort and peace in this?

Here is my prayer in Elisabeth’s words.

Lord, You well know how my flesh and my heart shrink from suffering, and how prone I am to forget that I once determined to follow one who was crucified. Yet in Your human flesh, dear Savior, You, too, shrank from the bitter cup your Father offered. I humbly ask You to strengthen my weakness, forgive my hesitancy, and open my understanding that I may gladly receive the small share of pain which is mine.

Here is the song I played over and over last night.

Earth has no sorrow Heaven can’t heal.

“

Dec 17
2014

Too Much To Ask

by Monica

it seemed too much to ask
of one small virgin
that she should stake shame
against the will of God.
all she had to hold to
were those soft, inward
flutterings
and the remembered sting
of a brief junction–spirit
with flesh.
who would think it
more than a dream wish?
an implausible, laughable
defense.

and it seems much
too much to ask me
to be part of the
different thing–
God’s shocking, unorthodox,
unheard of Thing
to further heaven’s hopes
and summon God’s glory.–Luci Shaw

Tonight I am facing plasmapheresis treatment again. I could have my cath placed as early as tomorrow. It is hard, and it brings risk, but it has also brought me the most healing and the best months of life. My counselor said today, “Do you know what I’m hearing? I’m hearing you fighting to be well because you have purpose.” It is true. I am completely committed to finishing the book in the first quarter of 2015. I need some measure of strength and health to do this.

I wrote in an earlier post the reasons I don’t ask God “Why?” anymore. Still, I wonder if maybe, just maybe. this is too much to ask of me. I wonder if it is too much for God to ask of my husband and children. I wonder if it is too much to ask of all of you who have loved and prayed and supported us for years on end in a story that is never finished.

I remember.
This is more than I deserve.
This too is Grace.

Madeleine L’Engle wrote,

We are all asked to do more than we can do. Every hero and heroine of the Bible does more than he would of thought it possible to do, from Gideon to Esther to Mary. It is only after we have been enabled to say, “Be it unto me according to Your Word,” that we can accept the paradoxes of Christianity. Christ comes to live with us, bringing an incredible promise of God’s love, but never are we promised there will be no pain, no suffering, no death, but rather that these griefs are the very road to eternal life. In Advent we prepare for the coming of all Love, that Love will redeem all brokenness, wrongness, hardness of heart which have afflicted us.

Tonight I will beg for a heart as willing as Mary’s. Yes, God, even this strange thing I do not understand. Do this thing in me. Use it for Your glory. Burn through every selfish ambition I have to be healed for personal gain. I trust you with this body. I trust you with my family. I trust you with our needs. I trust you with this book. I trust you with my eternal soul.

Be it unto me.

Dec 11
2014

Calvary Stills All My Questions

by Monica

I have been reading Amy Carmichael’s Rose from Brier again this week. Of all the gems in this little book there is one chapter I run to over and over again. Through the years it has taken root in my head and heart and finally silenced my “Why God???”

What, then, is the answer? I do not know. I believe that it is one of the secret things of the Lord, which will not be opened to us till we see Him who endured the Cross, see the scars in His hands and feet and side, see Him, our Beloved, face to face. I believe that in the revelation of love, which is far past our understanding now, we shall “understand even as all along we have been understood.” And till then? . . . There is only one way of peace. It is the child’s way. The loving child trusts. I believe that we who know our God, and have proved Him good past telling, will find rest there. The faith of the child rests on the character it knows. So may ours; so shall ours. Our Father does not explain, nor does He assure us as we long to be assured. . . But we know our Father. We know His character. Somehow, somewhere, the wrong must be put right; how we do not know, only we know that, because He is what He is, anything else is inconceivable. . . There is only one place where we can receive, not an answer to our question, but peace–that place is Calvary. An hour at the foot of the Cross steadies the soul as nothing else can. “Oh Christ Beloved, Thy Calvary stills all our questions.” Love that loves like that can be trusted about this.

A Father who loves me enough to give His only Son to die for me can be trusted. And so once again I lay it all down here at Calvary. I surrender my body to Him, a living sacrifice, and offer thanksgiving for this pain which helps me see more clearly the price that was paid for my sin. I breathe gratitude for an affliction that keeps my eyes fixed on things above and not on this earth.

I am slipping further away from the health He lovingly granted through my last plasmapheresis treatments in early September. I have been very ill since I returned from Texas. I am on my third kind of antibiotic but my blood titers are back up. This means I was reinfected at some point. I will see the doctor who helped me arrange local outpatient pheresis tomorrow afternoon. The risks of pursuing this again are clear. The beautifully designed network of veins and arteries in my body are faulty. They are lacking the collagen to keep them strong. They heal poorly after being punctured or cut. The only way this treatment works is using a catheter that is large enough to allow blood and plasma to enter and leave your body at the same time. It is placed in my jugular or large artery very near my heart. Every time we slice we are taking a risk. I weigh this with my desire to have more months of wellness and perhaps a body that eventually learns to fight infection on its own. I believe this can happen. This is how I pray for healing.

Delaney’s choir program is tonight. Her outfit we paid extra shipping for has not arrived. (Please God, could you send UPS before 6:00 pm???) Once again someone will send me a disc with a video of my darling girl singing. I will be missing life. This loss builds into a crescendo when it has been years and years of what often feels like failure. This is what I wanted to do well. This is what I had finally surrendered to as my “High Calling.” After working outside the home in search of affirmation and success God finally healed my divided heart and focused it on being Dan’s wife and Delaney and Danica’s mother.

As I sat at the foot of the cross today I remembered my pride and self sufficiency before all this began in earnest. I see how He has lovingly confronted my striving heart with deep need to humble myself and become dependent on others, including my husband and children, for even very basic things. I look full in His face. I don’t ask “Why?” His love for me stills this question forever.

“Love that loves like that can be trusted about this.”

Dec 8
2014

A River I Could Skate Away On

by Monica

“For the choir director: A psalm of David, regarding the time he fled from Saul and went into the cave. To be sung to the tune “Do Not Destroy!” Have mercy on me, O God, have mercy! I look to you for protection. I will hide beneath the shadow of your wings until the danger passes by.”–Psalm 57:1

It’s been a day of fitful sleep. I am trying to heal even though after all these years I’m not sure this is something you can “try” at. In my waking I feel angst and a gnawing worry I can’t explain. I haven’t had these feelings for months. I know for sure they come with the sickness worming into my brain.

I feel sad about Danica and I missing her program last night. It seems another golden moment was lost in a sea of memories of being sick and in bed.

We are missing a Christmas party tonight. Dan and I need to see one another like this. We need to dress up. I need to shave my legs and put on lipstick. We need to flirt in the company of others and slip out early because we are wildly in love. We need a connection that is not me needing and him serving. I want him to see me for even a few hours as laughing and lovely. I want to lay so close to him we are one. Do you know how little kissing happens when you have Strep throat for years on end?

Delaney needed to go shopping today for a black skirt and a white shirt for her choir recital on Thursday. I couldn’t take her. Once again we searched online and prayed something we chose will fit. We payed extra for shipping to make sure it will arrive on time. No fun. No bonding and a Starbucks after. Instead we had a fight about picking the cheapest thing and about tights. I hated it. I hate how it feels to still be so unable to do “real” life for her.

I’ve ached to be back to corporate worship after my genuine encounter with community at my retreat. Tomorrow I will miss another Sunday. I’m beginning to think regular church attendance isn’t ever going to happen for me. Dan takes the girls, but they are floating in and out. I am not along to build the relationships, get us involved in groups or open our home for hospitality.

Monday I head to the hospital for a bone density scan. After five years of no estrogen these bones are as weak as my collagen. It’s a cascading betrayal of my body. Thursday I see my gynecologist. There’s a small lump. I’m thirty-nine. All the normal things are piled on top of my ever complicated health profile.

I am called to count it ALL joy. Even this. Sitting at the foot of the cross how can I demand what I think this season should look like. How can I demand anything?

I have Joni Mitchell singing in my head.

It’s coming on Christmas
They’re cutting down trees
They’re putting up reindeer
Singing songs of joy and peace.
I wish I had a river I could skate away on . . .

I believe God meets me here.
He knows my hurting heart.
He understands my physical pain and my mental anguish.
He gets how badly I want to run away.

. . . I wrote the above post on Saturday. Like much of what I write I wasn’t brave enough to publish it. I’ve been reminded by many since. This honesty is why you read here. I rescheduled my bone scan. I’m just not feeling better and even worse in some ways. I’m sad. I’m afraid. He is the same.

I read this morning from Paul David Tripp’s devotional book New Morning Mercies.

“If Christ is your life, you are free from the desperate quest to find life in situations, locations, and relationships . . . So instead of wasting time on that endless quest for life, (or the “trappings” of Christmas) you have been invited to enter into God’s rest for the rest of your life. Rest in your identity as His child. Rest in His eternal love. Rest in His powerful grace. Rest in His constant presence and faithful provision. Rest in His patience and forgiveness. Rest.”

I won’t run away. I’ll run under the shadow of His wings and find refuge there. I’ll rest.

Dec 8
2014

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

by Monica

“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!

Dec 5
2014

He Did Not Wait. We Cannot Wait

by Monica

First Coming

He did not wait till the world was ready,
till men and nations were at peace.
He came when the Heavens were unsteady,
and prisoners cried out for release.

He did not wait for the perfect time.
He came when the need was deep and great.
He dined with sinners in all their grime,
turned water into wine. He did not wait

till hearts were pure. In joy he came
to a tarnished world of sin and doubt.
To a world like ours, of anguished shame
he came, and his Light would not go out.

He came to a world which did not mesh,
to heal its tangles, shield its scorn.
In the mystery of the Word made Flesh
the Maker of the stars was born.

We cannot wait till the world is sane
to raise our songs with joyful voice,
for to share our grief, to touch our pain,
He came with Love: Rejoice! Rejoice!–Madeleine L’Engle

Dec 4
2014

Leaning Toward Jesus

by Monica

“So when those bad things happen, if you lean towards Jesus–if you incline toward Jesus, if you rest in Jesus–you get the Gift of Jesus, like an ark of love, holding you, carrying you, raising you gently up through any flood of sadness that fills the world.”–Ann Voskamp, Unwrapping the Greatest Gift, Advent Day 4, “God’s Tears”

It has been a hard day. I am sick. What began last week as a respiratory thing I thought I was fighting quickly turned into something uglier. It started with brain pressure Tuesday night and ebbed into a super deep sore throat, headache behind the eyes, neck on fire, heart that hurts along with frantic OCD behavior, insomnia and despondent thoughts. If you are new here and did not follow my old blog you may not understand this is not just an unfortunate bout of illness. This is an attack on my body from a formidable opponent. A simple infection has the power to snake slowly into my brain and settle anywhere in my connective tissue. It has been four months since my last plasmapheresis treatment.

My husband had to leave work to get my girls from school. My appointment was long. I got a first shot of antibiotics and will go back tomorrow for another shot and take my Danica who most likely has Strep as well. My incision is hot and angry. The concern is cellulitis, Strep or Staph (I’ve had MRSA multiple times) inside my incision. When I went to get my prescriptions they weren’t ready. Salty tears ran down my cheeks. I came home as it was getting dark.

There were still mom things that had to be done. Danica needed a bath and her hair washed. Her Christmas program is tomorrow night. We got her dress out and little sweater and tights. I went to find a pair of dressy shoes, and there were none that fit her. She is my hand-me-down girl. We rarely buy her anything. Between Delaney’s old clothes and her cousin Mia and friends at school passing things to us, she is well dressed. We have half a dozen pairs of cute dress shoes in the bin. Her little feet just slid right out of every pair. More tears. Add stopping at Target after the doctor tomorrow at 8:20 am to grab dress shoes to our list. My dear friend Christy, who lives in Chicago, texted to check on me. She offered to run out and buy shoes and overnight them. Seriously, in this oh so hard life God has surrounded me with the most loving people. Of course I told her that was ridiculous. I loved it because it was so insane. That’s how Jesus loves us. No matter how sick Danica and I are we both need this Christmas program; just fifteen minutes of her on a stage and me in a pew and the feeling of normal.

After the day we all had, the last thing we wanted to do was gather around for Advent. Especially me. This is exactly why the discipline of ritual is vital. We need it most when we don’t feel it at all. It was my night to read, and I did with a barely there, oh so painful throat. It is day 4, and we are face to face with a God who saw so much wickedness on the earth he cried a flood big enough to cover the entire globe. There was one man, not a perfect man, a sinner, but one who found favor, and he was saved in a wooden ark.

Already we’ve gone from the tree in the Garden of Eden to the wooden ark. We are slowly making our way to Jesse’s stump and a seed child laid in a wooden manger, our Savior who lived to die on another tree. This is beautiful; finding our way to Christmas from the very beginning.

I could lean two ways tonight. My flesh tells me to lean toward anger and fear and despair. My God says to lean hard into Him.

I think of the beautiful words penned by Octavius Winslow my friend Violet sent me early in our Danica journey.

Child of My love. Lean hard. Let Me feel the pressure of your care. I know your burden, child. I shaped it—I poised it in My own hand and made no proportion of its weight to your unaided strength. For even as I laid it on, I said I shall be near, and while she leans on Me, this burden shall be Mine, not hers. So shall I keep My child within the encircling arms of My own love. Here lay it down. Do not fear to impose it on a shoulder which upholds the government of worlds. Yet closer come. You are not near enough. I would embrace your burden, so I might feel My child reposing on My breast. You love Me. I know it. Doubt not, then. But, loving me, lean hard.

Oh how I’m leaning.

“When you go through deep waters and great trouble, I will be with you. When you go through rivers of difficulty, you will not drown! When you walk through the fire of oppression, you will not be burned up; the flames will not consume you.”–Isaiah 45:2 NLT

Is God asking you to “lean hard” into Him during this season? Does the discipline of liturgy help you push through days and nights when you don’t “feel” like looking to Him?

Dec 3
2014

Praying Circles. Coming Full Circle at Laity

by Monica

“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?)

Dec 2
2014

Giving Tuesday . . . A Big Box Giveaway

by Monica

“Christmas, my child, is love in action. Every time we love, every time we give, it’s Christmas.”–Dale Evans Rogers

It’s no secret, following close behind words of affirmation, giving gifts is my love language.

I often think of those who may not have someone shopping for them during this season. Maybe it is a single mom who is scraping together enough to buy her children a little something that will never compete with the other parent’s gift giving ability. Her children are small, her friends are few, her parent’s gone or estranged, and there is no Christmas magic waiting for her beneath the tree.

I think of the married mom who manages the budget. She tells her husband there is nothing extra for him to shop for her. She still squeezes out enough to surprise him, but she sacrifices to keep the bills paid and not to add debt to their already difficult finances. (This is me!)

Or the woman whose husband is just a little clueless. No matter how she hints she’d like something else, a small kitchen appliance or, even worse, a Victoria’s Secret bag appears beneath the tree.

Maybe it is a single woman with no husband or children spending the day far from family because it is too expensive to travel or she must work. She wakes Christmas morning alone with maybe a few gifts mailed from home.

If you are a guy reading this maybe you have no idea how to pull together a surprise Christmas for your wife or girlfriend, and you could be the hero this year!

I want you to think of someone in your life who could use a Christmas surprise.

For Giving Tuesday I am mailing a box of some of my favorite things to you or a friend you nominate. Included is a beautiful milk glass vase from BHLDN. There is a grown up coloring book and a set of metallic coloring pens I loved so much when my friend Sarah sent them to me I ordered another set off Amazon just for this giveaway. There is a Smash book and extras along with a copy of my favorite magazine, Darling. If you can bear to cut it up after you enjoy it, this magazine is perfect for collaging in your Smash book. (I will have a post in January about collage as art. If you’ve never done it you must.) There is my favorite mint EOS lip balm and cuddly “Life is Good” socks. There is a Kelly Rae Roberts photo album and cloth banner. There are a few more goodies not pictured so they remain true surprises. Also not pictured is a special piece of my own Kelly Rae Roberts art. I will give you a peek tomorrow.

To enter:

1. Comment on this post by nominating someone you would love this package to go to. Share a little bit about why they would be so thrilled to receive a box of love. Just using their first name is fine. If your nomination is chosen I will contact you for their address.

2. Share this giveaway with your friends in hopes they will nominate you!

3. If you already know you are probably getting a small appliance go ahead and nominate yourself!

This is my last giveaway this year. The winner is chosen with a nifty random app and will be chosen midnight Friday so I can get this box in the mail. Let’s have some fun!

. . . Added today as promised, the beautiful and very meaningful piece of Kelly Rae Roberts art that will be included in my Big box giveaway. When Danica had surgery she called me mama bird, and I called her baby bird. God called us both to be fearless in many things. I love reading the comments so far! Share with your friends. This giveaway is open until Friday at midnight.

Dec 1
2014

Welcome. Another Laity Reflection

by Monica

“The essence of hospitality is a heart open to God, with room prepared for the Guestness of the Holy Spirit, that welcomes the presence of Christ. This is what we share with those to whom we open our doors. We give them Him.”–Karen Burton Mains

From the minute I arrived at Laity Lodge I felt room prepared. Yes, there was a literal room waiting for me, but the spirit of every aspect of this place whispered, “Welcome. You will meet Him here.”

I loved how during the first evening, Tim, one of the Laity employees, briefly explained the kind of hospitality we would experience in our days there. Always beautiful pottered mugs and hot coffee and tea waiting for us in the reception area of the dining hall. Always fruit and snacks waiting. If we needed or wanted anything at all, just ask. After a clanging bell was rung, the most lovely and healthy meals were served family style. We gathered around a table of strangers and friends who were in reality brothers and sisters from the same Father.

I was perhaps one of the attendees who was most on the fringe. Never once did I feel left out of the group. Just the opposite, I experienced open arms, listening ears and sincere hearts. I use the phrase, “To know and be known by you” frequently in my close friendships. I did not coin this term. It comes from Parker Palmer’s To Know as We Are Known where he describes hospitality as a “way of receiving each other, our struggles, our newborn ideas with openness and care. It means creating an ethos in which the community of truth can form.”

One of the things I was most anxious about in deciding to attend The High Calling retreat was sharing a room with someone I did not know. I arrived in an earlier group and settled into my space before my roommate arrived. Since deciding to attend I had prayed about who God would choose to share my space. I thoughtfully made a little tote bag of gifts to leave on their bed. Gifts. My love language. I haven’t shared a room with a stranger since college, and even then I did not do it well. When the door opened this beautiful woman came in, and her face seemed disappointed, even sad. She had come to the retreat thinking she was rooming with someone else. Someone she knew. Someone who was more important. Someone who had a large blog following and a published book. Someone who she could learn from and grow from because of knowing her. Who in the world is Monica Snyder from Uniontown, Ohio? I greeted her and told her I had been praying for her. She answered, “Oh, I haven’t!” We began to laugh. She explained how this room change turned her idea of what the retreat would be upside down. We hugged. I’m not sure who welcomed who, but it was comfortable and easy from that moment on. We told a little of our stories, a place I think everyone should start. How can I be with you if I know nothing about you? We headed out to dinner, and she welcomed me at “her” table and introduced me to the many she already knew. I silently exhaled. There was room for me. Caryn and I became very close during our time together. Except for my older sister, Rochelle, I can’t remember such late nights of sharing and laughing and “Oh, one more thing and then we HAVE to go to sleep.” I believe we will be lifelong friends and know God planned the room switcheroo for reasons we can’t even understand just yet. I am grateful for the willingness of this precious woman’s heart to open a space where our truth could meet.

I’m thinking about welcome as we begin Advent. Our Savior’s story begins with Mary making room in her heart and rearranging all notions about what her life would look like to welcome God made man into her womb. As Mary and Joseph traveled the night her labor pains began to come steady and strong they we told there was ” . . . no room for them in the inn.” Luke 2:7

Eugene Peterson wrote a beautiful poem about “Hospitality” from a small volume of his work titled Holy Luck. I love how he takes us from welcoming Jesus, something we think we would all heartily agree to do, to opening our hearts and homes to others who are broken angels unaware; to those who are Christ people in their messy state. Long after they are gone your sacrifice of welcome may become the story that saves and even raises you from the deadness into life.

Benedict taught us well: Receive
Each guest as Christ. The bell rings, the door
Opens. Some unexpected, and some, yes,
Unwelcome. Our guest book spills out photos.

Christ abused. Christ the fool,
Christ sullen, Christ laughing,
Christ angry, Christ envious,
Christ bewildered, Christ on crutches.

Like Gospel writers of old we pray
And reminisce over left behind guest signs–
A bra, a sock, a scribbled thank you–

And let them grow into stories. Sometimes
It takes an unhurried while. Then,
There it is: absences become Presence. Resurrection.

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