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Anticipation. A Calvary Love Story

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“..that sanguine expectation of happiness which is happiness itself.” ― Jane Austen, Sense and Sensibility

LOVE

Today is Dan and I’s anniversary. We are leaving for Tucson, Arizona early tomorrow morning. I can’t remember a time in our life together, even waiting for our babies, when we have longed for something in this way. The past few weeks have been full of wistful conversations about our upcoming trip. We have been flirting. We have been writing love notes and texts. We have been aching in anticipation of eight days of vacation from the long hard here. I am excited to take Dan back to a place I traveled a year ago following my shunt revision. I healed and tasted wellness there. I want him to see me this way. I want to be only one thing during this time. I want to be his Monica.

Song of Solomon keeps coming to mind. It is a book in the Bible I have mostly skipped over. Since I was a child I felt like reading it was akin to sneaking into the 612.6 section of the library to learn what I could about sex. It’s full of strong erotic imagery telling a story of lovers. Chapter two explores the expectation of them running away to be alone together but also speaks to restoration after a bleak time in their relationship and lives.

The voice of my beloved!
Behold, he comes
Leaping upon the mountains,
Skipping upon the hills.
My beloved is like a gazelle or a young stag.
Behold, he stands behind our wall;
He is looking through the windows,
Gazing through the lattice.
My beloved spoke, and said to me:
“Rise up, my love, my fair one,
And come away.
For lo, the winter is past,
The rain is over and gone.
The flowers appear on the earth;
The time of singing has come,
And the voice of the turtledove
Is heard in our land.
The fig tree puts forth her green figs,
And the vines with the tender grapes
Give a good smell.
Rise up, my love, my fair one,
And come away!
O my dove, in the clefts of the rock,
In the secret places of the cliff,
Let me see your face,
Let me hear your voice;
For your voice is sweet,
And your face is lovely.

When I think back over the last sixteen years of my life there is one constant thread binding the story. Before I really knew what Calvary love was; Before I had tasted real Grace that changes you from the inside out; God gave me Dan. I separate my life into chapters easily. I know telling the whole truth out loud about those years before Dan will someday be important. For now, I can only tell you Dan’s love saved my life as surely as God’s love saved my soul.

On a one night anniversary trip in 2012, two and a half months after my brain surgery and fusion and a month before I would head back to Maryland for my tethered spinal cord surgery and Tarlov cyst removal, I laid on Dan’s strong chest, my happy place, in a beautiful room at Gervasi. I was feeling ever discouraged with the never ending pain and suffering. I listened to him talk of his dreams for our family. He shared his new found peace with where we were. He asked me if I believed we would really move past all this in the future. He told me why he did.

My heart trusted him. To hear him verbalize something about our tomorrows besides being “stuck” gave me the very hope I was needing to move forward. He rescued me and faithfully loved me when I was so unlovable. He has always believed in the promises we made. He has laid down his life, his wants and his needs over and over again to care for the girls and I. He’s shown me Jesus when I couldn’t see Him anywhere else. I look at my husband, Dan, and see more than human love. I see Calvary love.

We will keep dancing.
We will keep sailing.
We will keep doing hard things because we promised, and His promises are true.
We will keep dreaming.
We will keep expecting good things.
Our Hope remains.

(Thank you to those who generously made this trip possible. You know who you are. Thank you to those who are genuinely rejoicing with us. God has been so good to continue to give me a measure of health since my December plasmapheresis. Will you please pray I will stay well and be fully physically present during this trip? Will you please pray for safety in every way for our sweet Delaney and Danica as they remain here? I will be offline except for sharing photos on social media because so many of you have asked to see glimpses of our happiness. I will return writing here soon and will resume my “If” series and giveaways. LOVE.)

This is one of our favorite love songs by Andrew Peterson. It plays often in the soundtrack of our lives.

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Dear Mom. A Letter from Delaney

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“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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Star Song

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Dali

Salvador Dali 1969 Lithograph from the BIBLIA SACRA 33 – SANCTUS RAPHAEL ET TOBIAS

We have been having
epiphanies like stars
all this year long.
And now, at its close,
when the planets
are shining through frost,
light runs like music
in the bones,
and the heart keeps rising
at the sound of any song.
An old magic flows
at the silver calling
of a bell,
rounding,
high and clear.
Falling. Falling.
Sounding the death knell
of our old year,
telling the new appearing
of Christ, our Morning Star.

Now, burst,
all our bell throats!
Toll,
every clapper tongue!
Stun the still night.
Jesus himself gleams through
our high heart notes
(it is no fable).
It is he whose light
glistens in each song sung,
and in the true
coming together again
to the stable
of all of us: shepherds,
sages, his women and men,
common and faithful,
or wealthy and wise,
with carillon hearts,
and, suddenly, stars in our eyes.–Luci Shaw

If you’ve read here long or at my old blog you know I love Advent more than any other time of the year. The order of the liturgical season leading up to celebrating Christ’s birth keeps my heart in a circle of never forgetting. It reminds my soul continually how the plan for Redemption was THE only plan. Throughout the Old Testament there are the hints and guesses that grow into clear signs of who would come to save us. I love spending an entire month so mindful of the miracle. Christmas is a big reflection of what God asks us to do with our lives all year long. He wants us to watch and wait. He wants us to draw near to the simple and humble and the human so we can really finally understand what a sacrifice God becoming man was and is. It’s Grace in slow motion, step by step to Bethlehem.

Growing up in Staunton, Virginia our amazing public library had large reproduction art pieces that were framed, and you could check them out to hang in your home for awhile. I was obsessed with decorating and design since I was a young child. I was always wanting to make my space inspiring and beautiful. My mom would let me check out the art from time to time. My favorite was one of irises printed on a grass cloth type canvas framed in gold. We didn’t grow up with much actual art in our home. There were cross stitch samplers of Bible verses and one big watercolor painting of my sister on a carousel hung over our couch. That’s about it. I didn’t have exposure to art through museums or my schoolwork either. It was just something that felt important to me like a good thread count and the right lighting. It was something I was born hungry for like poetry and architecture. It is something we all need and want at some level if we are honest with ourselves. In many ways the place I grew up became the canvas I studied. Watching the seasons change year after year in the Shenandoah Valley shapes your soul for beauty. All art is born from the master artist, our Creator, and I was blessed to live in the bowels of one of His special studios for many years.

Thanksgiving and the month of December are a time for looking backward and forward. As I play this long year in my mind one of my deepest blessings has been a friendship that came out of a strange and unexpected place. It has grown into part of my healing so deeply I don’t know if one would have been possible without the other. We are different in many ways and kindred in just as many. This creates an honesty and perfect iron sharpening iron way of communicating that is rare. We found out early on we both have a love for all kinds of art and need beauty around us in our day to day to be okay. Besides a whimsical collection from an Ohio watercolor artist Dan and I bought at the beach in North Carolina in 2006, which we have refused to part with during all our losses, we don’t own much meaningful art anymore. In our one year lived in and cherished home we have large walls with just empty space which is okay with us and especially me. I don’t want to hang things just to have something there. Everything in my life now really should reflect meaning and sometimes the empty space is just good. It’s part of the waiting for restoration and healing.

Not long after my hardware removal surgery, the second of three major surgeries in a row this fall, my new friend showed up on my doorstep holding a large piece of framed art to borrow. She had been in my room and even spent time lying in bed with me when I was too sick to get up. She could see I spent most of my hours turned on my left side facing a large blank wall. This particular piece of art had been in her bedroom and brought her encouragement through pain. It’s a stunningly painted forest with the richest colors creating a depth you have to trudge through. You have to explore it layer by layer until you reach this little patch of yellow, yes, light, at the very end of your journey. She brought it on a day I felt so hopeless, so sick, so lost in the woods I could not imagine making it through. She left the painting here for me to borrow. We hung it on the big empty wall I face when I am in bed the sickest. No matter what I could see the light. I could move towards the light. The painting changes depending on the day and the mood and yes, the light, and it has never looked exactly the same twice. I am still caught off guard when I stop to consider it. I still cry when I tell the story of how a little block of the purest shade of yellow somehow helps me believe it is going to be okay.

Several weeks later my friend showed up with a religious piece to borrow. It is in our living room over the mantel. Dan and I sat enjoying our coffee this morning discussing this particular piece. Beyond the literal meaning we have our own interpretations. The angel and light overshadow the struggle below of man. It is a hopeful piece. It came from an artist whose friend knew he was agnostic so he asked him to study Scripture and paint a series of work depicting Biblical stories in prayer of stirring his heart to come to see the truths he held dear. I think I will need to return this piece after the holidays before I become too attached, but it has illuminated our simple holiday decorating and speaks to the spiritual journey we are on this and every Christmas season.

Pulled by the tinsel and things and expectation of things I see the angel speaking to us glad tidings of great joy. Sit down. Be still. Listen to how this aching and hurting and waiting will unfold now. I know there were days and weeks and even months without a sign. You thought I had left you here without a Savior. Your suffering and your broken bodies and hearts will be healed by His stripes. A baby born of a virgin is just the beginning of the miracle. You will be saved! Do you believe? Can Redemption happen so slowly it begins as a shoot from a stump? Can it be as simple as a scene in a manger?

Light a candle tonight.

Take one step.

He is coming.

We have stars in our eyes.

(This is a repost from my blog last December with some personal narrative removed. Glynn Young wrote on his blog, Faith, Fiction, Friends, about the importance of art in his life. It sent me back to read this entry. The Dali is returned now and a Marc Chagall is my newest piece on loan. The sun is shining. I’m exhausted, and my treatment has been delayed until 3:30pm today. My dear friend and art benefactor will take me. Since I returned from the hospital this morning for blood draws I’ve been staring straight into the light. I’d rather go blind than look away.)

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When God Whispers

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“If there is a pattern in Scripture regarding whispers, it is that we serve a communicating God- a God of words. He created with a word, He healed with a word, He encouraged with a word, He guided with a word, He prophesied with a word, He assured with a word, He loved with a word, He served with a word and He comforted with a word. Throughout all of history, God has communicated, and He still is at it today. The issue isn’t whether or not God is speaking; it’s whether we will have ears to hear what He says.”–Bill Hybels

New Image

Since my first pheresis treatment on Saturday I’ve had trouble hearing God. Overcome with depression this morning I set out to find His voice in this valley of pain.

The story of God’s provision for Elijah in chapter eighteen of I Kings has often encouraged my heart. I love how God continued to feed the widow, her son and the prophet with just a little flour and oil. When the son became ill to the point of not breathing Elijah pled with God about the “unfairness” of bringing this calamity upon a woman who had so faithfully obeyed. God allowed Elijah to heal the boy through His power. I think if you or I had witnessed one or both of these miracles we would boast there is no way we would soon forget God’s faithfulness and certainly would trust Him with any new challenges that might crop up.

In chapter nineteen Elijah was on the war path. Full of the Spirit he killed all the false prophets with a sword. The word came to him that Jezebel was plenty mad and out for his blood. Just like that Elijah was overtaken with fear and ran for his life. He traveled out in the desert, left his servant and went a day further. He found some shade and got real with God. “He came to a broom bush, sat down under it and prayed that he might die. ‘I have had enough, LORD,’ he said. ‘Take my life; I am no better than my ancestors.’ Then he lay down under the bush and fell asleep.”

This despair came from the euphoria of a battle won being followed immediately by a hardship that seemed to close the door on everything he had prayed for, hoped for, dreamt of and lived for. This is exactly where God brings His children to understand what they REALLY believe.

Once again we see the compassion of God as He sent an angel to care for Elijah’s physical needs. He ministered to him with several meals between naps until Elijah’s strength and resolve began to return. Elijah made the forty day journey to Mt. Horeb and set up camp inside a cave. When he woke God confronted him about his complacency and discouragement. I love how God said so bluntly to him, “What are you doing here, Elijah?” I know God has woken me up and said this to me before. “Seriously, Monica, What are you doing here? Why are you so afraid? Don’t you remember my compassion and lovingkindness? Don’t you think I have this plan worked out for my glory and your joy???” Elijah’s answer makes me chuckle a little. It’s like a child to answer the way he did, not remembering God’s question was rhetorical. He knows all. It wasn’t an information seeking question. Still, he said, “I have been very zealous for the LORD God Almighty. The Israelites have rejected your covenant, torn down your altars, and put your prophets to death with the sword. I am the only one left, and now they are trying to kill me too.”

God answered with a request, “Go out and stand on the mountain in the presence of the LORD, for the LORD is about to pass by.”

As if food out of nothing, the power to raise a child from the dead, strength to slay soldiers and just having his own personal angel minister to him was not enough God let him know He was going to show Him something only one other man, Moses, had ever seen. He would show him a real glimpse of the God of Heaven and earth.

Here’s the best part.

I can completely feel Elijah’s heart beating out of his chest as he waits.

Then a great and powerful wind tore the mountains apart and shattered the rocks before the LORD, but the LORD was not in the wind. After the wind there was an earthquake, but the LORD was not in the earthquake. After the earthquake came a fire, but the LORD was not in the fire. And after the fire came a gentle whisper. When Elijah heard it, he pulled his cloak over his face and went out and stood at the mouth of the cave.

A gentle whisper.

Not in the wind.

Not in the earthquake.

Not in the fire.

A gentle whisper.

God asked him again, “What are you doing here, Elijah?”

The realization set in. Elijah knew what God was trying to say. It wasn’t going to happen the way he dreamt. God’s plan was different all along.

Elijah wanted a spectacular showing of God. Instead God literally crushed Elijah’s own idolatry of needing his ministry to play out his way, because He wanted him to have greater joy. For all intents and purposes God ended Elijah’s ministry and passed his legacy on to someone else.

God seems harsh. Or does He? His provision for Elijah had been RELENTLESS. God’s purposes for his life were clear cut.

God’s glory.

Elijah’s greater good and ultimate joy.

Fast forward to the New Testament and chapter nine of Luke. Read the entire chapter. Wow, it’s good. But beginning in verse twenty-eight it begins to tell the story of the transfiguration of Christ.

About eight days after Jesus said this, He took Peter, John and James with Him and went up onto a mountain to pray. As He was praying, the appearance of His face changed, and His clothes became as bright as a flash of lightning. Two men, Moses and Elijah, appeared in glorious splendor, talking with Jesus. They spoke about His departure, which He was about to bring to fulfillment at Jerusalem. Peter and his companions were very sleepy, but when they became fully awake, they saw His glory and the two men standing with Him. As the men were leaving Jesus, Peter said to him, ‘Master, it is good for us to be here. Let us put up three shelters—one for you, one for Moses and one for Elijah.’ (He did not know what he was saying.) While he was speaking, a cloud appeared and covered them, and they were afraid as they entered the cloud. A voice came from the cloud, saying, ‘This is my Son, whom I have chosen; listen to him.’ When the voice had spoken, they found that Jesus was alone. The disciples kept this to themselves and did not tell anyone at that time what they had seen.

WHAT? How did I miss this all these years? These were the two men who had been granted a glimpse of God’s glory in their earthly ministries and both denied their deepest earthly dreams. It was as if God held out their greatest treasure to them in His almighty hand and then said, “Do you see it? You can’t have it NOW.” They appeared in glorious splendor talking with Jesus. Elijah was finally shown “the light of the knowledge of God’s glory displayed in the face of Christ.”–II Corinthians 4:6

It all makes sense.
This is how God works.
He often chooses to go after our greatest treasures and leave us with nothing else but a quiet whisper.
I have to admit. I am often pitching a fit too loudly to even remotely hear His voice.

Saturday’s plasmapheresis treatment was exhausting. This weekend has left our family aching. If I’m honest I’ve had hours when complete amnesia of God’s faithfulness comes over me. My heart cries out like Elijah’s, “I’ve had enough.” I wonder if God will ever allow me to see the desires of my heart fulfilled here on earth. Dan is sad in a way I can hardly bear. Delaney is feeling the weight of our life more than ever, and I worry it will breed resentment not more love. Danica is the only one childlike enough to still float. We bear this burden as seasoned warriors. We speak of it out loud. There is no pretending here. As Dan and I settled into our bed just now he said, “Let’s Notebook it.” If you know Nicholas Spark’s sweet love story then you understand. We would like to slip away together.

I’m looking for some crazy answer to come in on wind or an earthquake or a burning fire. He’s showing Himself daily in provision and healing and strength to fight and even angels who care for me with earthly graces. What if He’s holding out in His hand this thing, my health, the ability to ever really function normally again and then telling me, “You can’t have it now.”

This is where God has brought me to understand what I REALLY believe. What I do in these moments means everything.

God will not leave me here in these disappointments. I have a sure and certain HOPE. I will see Him face to face, and when I see Him I will be like Him. He has gone to prepare a place for me. Home. Health. Enjoyment forever. Exceeding, abundantly more than I could ever ask or think.

God is relentlessly pursuing me and whispering in my ear. “Do not lose heart. He that endures to the end will be saved. My strength is made perfect in your increasing weakness. I will be glorified the most and your joy will be the greatest when this is finally over.”

You are my God.
You are impossible to overestimate.
I believe in Your whisper tonight.

pheresis

Treatment two is tomorrow. Dan will work. The girls will go to my parent’s house. My dad will pick me up at 6:30am and take me to the hospital for labs necessary before the okay to proceed. My Janet will take me back at 1pm to begin pheresis. Thank you for your prayers.

Smoke photography by Cindee Snider Re. Used with permission.

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

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“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

DSC00582

“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

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“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

Ebenezer

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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Welcome. Another Laity Reflection

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“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

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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.”

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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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Playdates with God. And another giveaway

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“What if man could see Beauty Itself, pure, unalloyed, stripped of mortality and all its pollution, stains, and vanities, unchanging, divine, . . . the man becoming, in communion, the friend of God, himself immortal; . . . would that be a life to disregard?” –Plato

Playdates

Every year I choose a word. For a lover of language this is a difficult task. The green leaves I love begin to turn brilliant shades of red, yellow and orange as they loosen their grip on their life source and float to the ground. The light dims as days get shorter and cold winds blow in. I dig deep and bury heart cries of musty yearnings mixed together like a bag of bulbs never knowing what will bloom. Covered by cold earth and first snows my winter sadness always sets in. I anticipate the journey of Advent, but I long for the afterbirth, the new life that grows from the stump of Jesse’s root. I really need the Cross and the Resurrection. I need the Hope of a God who is making all things new. I ask God to show me what I should choose to shape my entire coming year around.

My word for 2014 is “PLAY”.

In May of 2009 Danica’s neck went crooked. Our lives were turned inside out and upside down. I stopped playing. Every single effort of my spirit, mind and body was for saving her and holding our family together. I worked to continue to provide day and night. In between I was driving this little girl to every doctor, specialist and therapist I could. Dan worked the 3-11 pm shift so I could try to work online in the mornings. I was alone with the girls at night. After I would get my little Delaney tucked in I would sit outside Danica’s door while she screamed in pain. My prayers were a strange and sometimes sinful bargaining with God. I would give Him anything if He would just help her. I barely ate. I couldn’t sleep. When I finished my programming list work, and she had finally cried herself to sleep, I became obsessed with internet research and making connections with anyone who might help us.

Our bodies can only withstand this level of stress for certain periods of time. They will eventually break. I found a counselor early, before we even knew what Chiari was, and she drew me a picture of my brain. She showed me simply how there are two bowls there. One is what empties us; work, stress, illness and toxic relationships mixed in with basic things we may lack like shelter, food, clothing and security. The other bowl holds good things in whatever form we most need; the basic things I mentioned above but also rest, relaxation, loving relationships and yes, PLAY.

We were created by a God who loves to give us good things. He created us to experience pleasure. Rest was so important to Him He actually made it a rule to live by and dedicated one day out of seven to it. He asks us to be like children in many ways. He wants our hearts and minds free in such a way we do not worry about what we will eat or drink or wear but choose the better part instead. We are back to the Catechism I shared in an earlier post. God wants us to spend quality time enjoying Him and glorifying Him forever.

I began 2014 determined to restore some kind of good to the almost empty bowl in my brain. After a revision of my brain shunt in February I was blessed to take a trip to Tucson. It was an amazing week of retreat and rest but also of play in every way. I wore my talisman of play the entire time. (Lisa Leonard makes the most beautiful hand stamped jewelry perfect for your word of the year.) I read spirit filling books. I laid by the pool with my face in the sun. I hiked into the Sonoran hills. I bird watched. I took lovely photos of tiny dessert details. I had a spa treatment. I fed my body healthy meals. I spent two full days of my trip with my dear sister-in-law, a relationship that sustains me. I sat on the patio every single night to watch the sun set over the mountains and the starts and city lights appear. Each evening, along with the other guests there, I drank a shot of tequila and toasted new friends around a fire that burned late into the mountain chill. It was everything I needed and wanted it to be. I was also well for the first time in years. I had the week I’d begged God for. Just seven days of feeling no pain and remembering what real life could be like. He graciously gave this to me. My only regret was my husband and girls could not see me like this.

When I returned home I began to look for ways to begin again doing things I enjoy. I made more art. I planted a perennial garden. I threw a fun outdoor party with all my friends. I went to a concert. I went shopping with a friend to putz for vintage treasures. I listened to music and watched movies I’d missed in those lost years. I was able to just be with my husband and girls, and this was the best play of all; having a relationship with them outside my bed, outside of pain, outside of sickness. Mixed in all this was some intensive plasma treatment and hospitalization, IVIG infusions with home health, Meningitis, more plasmapheresis and another surgery, but I had filled up the good bowl enough to make it through. Play saved me.

Several months ago Laura Boggess published a book titled Playdates with God. I have read it through twice now. It is all marked up and page flagged. The book is a beautiful journey through her own longing to make deliberate time in her serious and busy life to just BE with God in the purest form possible here on earth. How do we even begin this without some kind of intention turned into practice? Could we start small? Could we carve out just one hour a week for our hearts to pursue enjoying God and practicing play? Would the ritual grow to become a sturdy thread in the fabric of our lives?

Laura points us to Timothy Keller and Katherine Alsdorf’s examination of Sabbath in Every Good Endeavor. They share three main tenants of God’s gift of rest and play. The Sabbath is a celebration of our design. It is a declaration of our freedom, and it is an act of trust. Laura writes, “To be free to live as we were designed to –with the confidence afforded by trust that our Divine Parent will work out all the details for our provision—this is the beauty of Sabbath. . . Time with God. Alone, Just the two of you. This is how intimacy develops. This is how we grow the trust necessary to come to God as a little child.”

I met a dear friend for coffee on Saturday. Her heart was sad about how life is sweeping her away. Day after day of sameness turning into weeks, making months and then suddenly you see a year of life gone without much joy at all. How does this happen? I encouraged her to put first things first every single day and then start small. You can do this too. Carve out one hour a week and make it holy. Let your husband know and your children know this is an appointment with God. It’s not your quiet time or your prayer time or your Bible study. Those are the first things. This is an hour you will do something you love. You will open your eyes and your heart like a child to remember what brings you joy. This is your chief end. Glorify God. Enjoy God. Make a playdate with God.

Tomorrow morning I am heading to Laity Lodge in the hill country of Texas for The High Calling retreat. I will be beautifully out of touch from this “world” and in fellowship with saints and my God in a hallowed place.

While I’m gone think about how you would you choose to spend your first playdate with God? Share in the comments here. When I return I will randomly choose a winner of my “PLAY” chalkboard banner I have treasured this year and a copy of Laura’s book “Playdates with God.” To be entered you need to subscribe to the site on the right side of the homepage, comment on this post and share socially by clicking the links below. Keep your eyes open. You will SEE Him. Ordinary miracles are His specialty!

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The Snow Child and “Ordinary” Miracles

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“She could not fathom the hexagonal miracle of snowflakes formed from clouds, crystallized fern and feather that tumble down to light on a coat sleeve, white stars melting even as they strike. How did such force and beauty come to be in something so small and fleeting and unknowable?” ― Eowyn Ivey, The Snow Child

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It’s no secret I’m not really a lover of snow. I suffer from Intracranial Hypertension, and I can predict snow before Doppler radar because of an intense pressure headache that grows from the feeling of numb fullness to a skull crushing my brain. My second brain shunt, now almost a year old, helps some. The grey skies hurt my heart and cold almost paralyzes my body. All this makes me wonder why God has me living here in Northeast Ohio.

There is still a wonder in the first snow of each year. It began falling last night as I put Twixie out for the last time before bed. Just like a child I stood in awe of the flakes falling on my eyelashes and face. I reached out to catch one and the second it touched my fleshy warmth it was gone.

Several years ago I gifted my mom with the book The Snowflake by Kenneth Libbrect. It is a stunning coffee table book with micro photographs of individual snowflakes. Not knowing I deeply desired the book for myself, my friend, Janet, gave me one for Christmas last year. There is also a smaller gift edition available. Never before had I seen or begun to understand the intricate DNA of every single crystal miracle. We all hear the adage, “There are no two alike.” I finally believed.

I’ve been keeping my eyes wide open for “ordinary” miracles. Somewhere between real life and fairy tales there is a snow child in us all. The beauty and the ugly of our stories make up remarkable narratives about the detailed design our God is revealing in each one of us. Many times these lessons are fleeting and only our for a moment. Look around you today. What may seem cold and wet and slightly inconvenient is also a gift. What other wonders are we taking for granted because we cannot slow to see?

“You did not have to understand miracles to believe in them, and in fact Mabel had begun to suspect the opposite. To believe, perhaps you had to cease looking for explanations and instead hold the little thing in your hands as long as you were able before it slipped like water between your fingers.”― Eowyn Ivey, The Snow Child

(If you haven’t read the novel The Snow Child you must! It is truly an adult fairy tale you will not be able to put down. It will shape you and stay with forever.)

And this. Sarah McLachlan singing “Ordinary Miracle.” Way back when Team Danica started I had this song play every time you opened the site. I’m listening to it on repeat today. Enjoy.

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