Archive of ‘Music’ category

In Everything You Do. Choose Life. Gauntlet Story Feast

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

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

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

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

CHOOSE LIFE.

SHARE YOUR STORY. If you are walking a Gauntlet or are close to someone who is and would like to contribute to our Thursday community please email me at mkayesnyder@gmail.com, and I will send you the instructions for submitting. Share with anyone you know who might like to join our Gauntlet Story Feast. (Please use the hash tag #GauntletStoryFeast when sharing so we can find and follow one another.) Our Hope remains.

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Even Giants Fall. Gauntlet Story Feast

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This week’s story is a flashback written by my friend Cindee five years ago. Many of us are not just walking the Gauntlet on our own. We have genetically passed the DNA glitches to our children and are navigating this painful journey with them as well. It is heartbreaking to see them suffer. In families like Cindee’s and my own, there may be a sibling who has been spared. All the guilt and gratitude the well child feels along with fear and sadness for their brother(s) or sister(s) swirls into a vacuum of physical and emotional pain we never could have imagined.

God brought Cindee and I together last fall in the most beautiful place at the perfect time in both our lives. Her kindred heart is treasure. She has faithfully covered me with her prayers and words. During my last plasmapheresis treatments she sent me a card with a poem every single day. Before my last surgery she filled an entire journal with handwritten quotes, poems and verses. They continue to be balm for the wounds of my soul.

Today Cindee is at appointments all day with her daughter Meg. They had PT this morning then four hours in the research unit this afternoon. Tonight they are helping genetics and their PT/OT clinic launch a brand new offering (Thursday Night Live) for teens with connective tissue disorders and their parents. This is what warrior moms do. We are not just fighting for our own children to have the most whole life possible but also for the ones to come after us. Will you please pray for my friend and her family today?

Even Giants Fall
By Cindee Snider Re

(This post was written about five years ago when Sam was 15 and about 2 years into diagnosis. Kyle was 17. The boys are now 22 (Kyle) and 20 (Sam). You may remember Sam shared his story here earlier. You will want to go back and read it if you missed it or are a new reader here.)

It was late Tuesday afternoon. My son Sam and I were driving home from Children’s Hospital. Traffic was heavy and although the radio was on, I wasn’t listening. Sam was. “It’s true, you know,” he said.

“What’s true?”

“That ‘you never know what you’ve got till it’s gone,’” he answered as the song’s chorus replayed in the background. “I never understood that before, never appreciated waking up and feeling good or being able to do whatever I wanted when I got out of bed. I just took it for granted, figuring it’d always be that way.”

Tears welled in my eyes as I struggled to find words to answer my son. In February, he’d been diagnosed with Eosinophilic Gastroenteritis, an auto-immune disease affecting his GI tract. He’d lost 22 pounds in ten weeks and spent time in the new acute care wing of Children’s Hospital. Sam’s illness had caught us off guard. He’d been a physically strong, able, active teen who regularly ate us out of house and home, and suddenly, overnight, he wasn’t eating at all and rarely left the house, rarely left the recliner.

Tuesday afternoon, four months into treatment, we were heading home from more appointments. “I’d give almost anything to go back to before I got sick and really appreciate what I had,” Sam continued.

His words sliced through my soul. “Oh Lord,” I prayed, “why does my son have to go through this? He’s only fifteen, such a hard age to be different, sick, unable to eat his favorite foods or go out to eat, and he never, ever complains. He just gets quiet and tries so hard to focus on something, anything besides the pain. This is hard, Lord!” I silently cried out. “And I don’t know if I’m strong enough to help him through this.”

My oldest son, struggling with similar emotions and rocked by the changes in his brother and their relationship, poured his heart out in song.

This is a song of my greatest friend,
The one whom I love and would die to defend,
Whose honor and loyalty have no compare,
A soldier in a battle, too much to bear.

(Chorus)
I thought that you were unbreakable
That my faith was firm and unshakable,
But now I find that I was wrong.
There’s only one Being who’s that strong.

I can’t stand that you’re in pain,
And I don’t have the power to take it away.
It’s just too much for me to take,
That even a giant like you could break.

(Repeat Chorus)

So hold on, Sam, this storm will pass.
Just hold on, Sam, this pain won’t last.
Hold on. Hold on. Hold on.
God’s got you in His Hands.

I feel like I’m dying on the inside,
And I’d rather run than face a lie, cause
When it comes to compassion, I’m hit or miss
But you stand and say that we’ll get through this.

And He’s watching, watching out for you,
Just have faith, and we’ll make it through
Together.

“Father, there are no answers, just questions and emotions and a family holding on in faith, knowing You’ll see us through, and that we’ll make it there together, hand-in-Hand, standing strong in You! Amen.”

Cindee

About Cindee in her own words:

I’m wife of 23 years to an amazing husband and mom of five creatives — Kyle, 22, Sam, 20, Sarah, 18, Anna, 17, Megan, 14. We’ve homeschooled for 16 years — kindergarden through high school. Quite an adventure! Our oldest graduated from college (with honors!) in May. Our home is often filled with teens/early 20s I’d claim as my own in a heartbeat. I love words, photography, nature, hiking, cotton, denim, and tea. And I crave quiet. Four of our five (and me) have Ehlers-Danlos, a genetic connective tissue disorder, through which I’m learning the deeper the valley, the greater the joy. I live in hope, grateful for grace.

Cindee’s blog can be found at http://www.breathedeeply.org

SHARE YOUR STORY. If you are walking a Gauntlet or are close to someone who is and would like to contribute to our Thursday community please email me at mkayesnyder@gmail.com, and I will send you the instructions for submitting. Share with anyone you know who might like to join our Gauntlet Story Feast. (Please use the hash tag #GauntletStoryFeast when sharing so we can find and follow one another.) Our Hope remains.

Photography by Cindee Snider Re. Used with permission.

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A Quote. A Poem. A Song. On Hope

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“The difference between shallow happiness and a deep, sustaining joy is sorrow. Happiness lives where sorrow is not. When sorrow arrives, happiness dies. It can’t stand pain. Joy, on the other hand, rises from sorrow and therefore can withstand all grief. Joy, by the grace of God, is the transfiguration of suffering into endurance, and of endurance into character, and of character into hope–and the hope that has become our joy does not (as happiness must for those who depend up on it) disappoint us.” ― Walter Wangerin Jr., Reliving the Passion: Meditations on the Suffering, Death, and the Resurrection of Jesus as Recorded in Mark

I wanted to write today, but my head hurts so badly I cannot form complete sentences. I need to take some pills and crawl into bed. Dan will leave work early to help with the girls. I do it rarely, but we both know when it hits like this I have to clock out.

On the way to my cool, dark room I got on my knees at my prayer bench. I couldn’t even muster a guttural plea. Not even a “Dear God, Please.” Nothing. Numbness. I held my favorite heavy gray stone in my shaking hands. It is engraved with my life word. HOPE. I thought of a song I’ve claimed as “mine” for eight long years. How do the lyrics go? I came back to my computer to find my folder on hope. It’s a digital scrapbook of anything I’ve ever read, watched or listened to on the subject. Next to the download of Natalie Grant and Christa Well’s song, “Our Hope Endures,” the above quote is saved in a text file. I listened to the song. I read the words, and I wrote this. It is only the second poem I’ve written since my early twenties. I’m going to lie down and soak my pillow now.

Pain.
I call him Sorrow,
Because there are no new words.
I’m crying out,
“How long, Oh Lord?”
Does He hear?

Happiness.
I miscarried her early on.
I don’t visit the grave.
I won’t miss someone I don’t know, but
She didn’t deserve to die.
Should I believe this?

Joy.
Born of suffering.
Endurance was the doula’s name.
Her mother was Hope.
I held her wet with vernix.
Would I clip the cord?

Grace.
The place we live together now.
Adoption is true religion.
Character is the swaddling cloth.
Suffering is transfigured.
Could this ever disappoint?

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How Can I Go On Like This? Abide With Me

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“What surgery meant to *Monica and what it meant to almost anyone else were two different things entirely. For *Monica, a single surgery was more like a fitting for a dress, or the rearranging of living room furniture: it was only a step towards something else. She never gave up believing that there would be a final moment, a last surgery, a point at which her “real life” would begin.” Ann Patchett, Truth and Beauty (*Lucy was Ann’s dear friend)

I need another surgery.
I am thirty-nine years old.
This will be my twentieth surgery.
This will be my seventh neurosurgery.

This IS my life.

In January I asked God to let me go just one year without a scalpel.
I made a list of 40 things I wanted to do before my 40th birthday on November 5th.
I created a beautiful vision board.
I planned out the finishing of Gauntlet With a Gift by April 30th.
I arranged Dan and I’s Tucson trip in February.
I booked a beach house in Corolla for a family vacation the last week in May.
I registered for a writing conference at Princeton in June.
I dreamed of a long July weekend in my Shenandoah Valley hometown with a childhood friend.
In August I wanted to make good on a five year broken promise to Delaney to visit NYC together.
I penciled in a Cleveland Indians game and a concert on the lawn at Blossom before summer’s end.
I booked a hotel in Columbus for my friends and I to attend the Country Living Fair in September.
In late October I intended take my girls to Fallingwater as the leaves turned.
And I wanted a birthday party. A big one.
More than anything I purposed in my heart I would not NEED you.
I would not fund raise.
I would not talk about our medical debt.
I would not blog about my day to day health struggles.
I wanted to do something new here.
I wanted to shine Hope.
I wanted to talk about healing.
I wanted to share other’s stories.
I wanted you to know all your praying, all your giving and all your caring tangibly changed something.

My trip to Maryland last week revealed the reason I cannot get through twenty-four hours without a debilitating headache. It makes a crescendo around 2 pm every single day, and I crumble.

I have all different kinds of headaches, and I am able to tell you about them in detail.

A pressure headache is the feeling my skull and brains will explode. This typically comes from weather changes. I have a lumbar shunt sewn in my abdomen that snakes around to my spinal cord. Theoretically it removes excess cerebral spinal fluid building up and empties it into by belly to be absorbed by my body but often it is not enough. This headache makes me cry. I hold my head in my hands while I curl up in a ball and beg God to make it stop.

A “brain on fire” headache comes from illness like Strep or a wicked mast cell attack from something like bleach or a lilac or your perfume. This headache makes me certifiably insane. I am mean. I am crazed. I am desperate. Praying is almost impossible.

A migraine is like an ice pick in the front of my head spreading pain all over. Any light or noise makes it worse. I am nauseous, and I often throw up. I know it will last for at least twenty-four hours but often I wake up the next day with it. This headache makes me sad.

The headaches above come and go but lately have been layered on top of a never ending, something is smashing my spinal cord, seizing from the back of my neck up my head and over the top of my skull, buzzing and numbing, I cannot live like this pain. I have not suffered this kind of headache since my brain decompression and skull to C2 fusion in November, 2011. It began in Tucson. I explained it away as travel and hiking and washing and flat ironing my hair every day. The popping and grinding of my cervical vertebrae not already fused escalated. I wake and think it is manageable but rotating my neck at all, looking up or down or lifting anything ruins me. This headache makes me cry, “How can I go on like this?”

A month or two in I knew. A scan was just the calling card for a sure thing. I wondered how much damage was being done. I worried about a syrinx forming. I flipped ahead on my calendar to see what would need to be canceled. I saw another season of my life and my family’s life swallowed up by a nightmare deja vu.

I need a fusion of C5-C7. There are two different options for this surgery, one going in the front of my neck, removing the hardware from my C3-C4 fusion I had in October because it is solid and then fusing the three vertebrae below with hardware and bone slurry. The second option is more invasive. I would be cut in the back of my neck and the C5-C7 would be fused posteriorly as well as adding extra stability with bone slurry from my C4-C5 and my C7-T1.

My surgery is scheduled at Doctor’s Community Hospital in Lanham, Maryland on Wednesday, June 24th.

Like every time before I have no idea how we will do this. There is a $5,200 deposit. There is more travel and more hotels. Dan will take off work. The girls will stay here with family. Their summer story will be held in place by the bookends of their mom suffering and trying to hold on until surgery and their mom recovering from and trying to heal after surgery.

This is their life.

I only wanted one year.

How can I go on like this?
How can they?

I’m sitting here in my “nest” chair with both great room windows open. The early evening sun and breeze move like skilled dancers in the woods behind us creating the backdrop and the lighting for a concerto of bird songs. A daddy and mommy cardinal are building their home in the orange blossom tree along side our deck. They take turns swooping in with new materials for their sweetly thatched hideaway. By the time the delicate flowers flourish their precious eggs will be be nestled safely to incubate and hatch new feathered babes. If I look long enough I can see our grass growing greener. I witness bright yellow dandelion heads morphing to puffy white seeds. If I listen closely I can hear leafy buds on our deciduous darlings opening fuller than even the moment before. The tulip tree outside my kitchen and sun room windows finally risked to bloom. The petals are a graduated palette of blush to rosy pink spun like the softest silk. It is the maid of honor to our flowering pear tree, a bride wearing the most intricate lace gown. This is our third spring in this miracle house. When you are gifted a view of seasons changing over and over again from the same looking glass you begin to let yourself feel at home. If you know our story you know my heart. I thank God every day for this place.

My dear Amy Carmichael wrote these beautiful words:

“We say, then, to anyone who is under trial, give Him time to steep the soul in His eternal truth. Go into the open air, look up into the depths of the sky, or out upon the wideness of the sea, or on the strength of the hills that is His also; or, if bound in the body, go forth in the spirit; spirit is not bound. Give Him time and, as surely as dawn follows night, there will break upon the heart a sense of certainty that cannot be shaken.”

Tonight I am asking God for certainty that cannot be shaken.
Again.
Without it how can I go on?
I will trust.
I will abide in Him.
He will abide with me.

This hymn sung by Indelible Grace has been one of my favorites since I was a child. It was written by Henry Francis Lyte in 1847 while he lay dying from tuberculosis. He survived only a further three weeks after its completion.

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Who Do You Think You Are?

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Monica10

It’s late.
My family is asleep, and I am awake.
Nights are the longest.
Nights are the hardest.
There is no one left to convince I am okay.
There is no one waiting for me to say the right and true thing.
There is no one needing me to shine a light on their own version of this difficult life.
I am alone.

I began a new round of plasmapheresis treatments last Tuesday. After Monday’s brutal attempts to get IV access before my catheter placement I was already beaten up. A large hematoma began to form where the doctor, through ultrasound, finally found a vein in the upper part of my right arm. This along with the pain and invasive nature of the plastic tube stuck from my jugular into my heart’s main artery had shaken me. I felt like the first three treatments went as well as expected. I had the usual exhaustion, headaches and nausea, and by Easter Sunday I was wiped out. I knew something wasn’t right beyond the treatment side effects. Dan took the girls to church and to my parent’s for dinner and egg hunting. I stayed in bed. My headache was gaining momentum. When I woke Monday morning I knew I was in trouble. I couldn’t lift my head off the pillow.

Dan drove to the emergency room Monday evening at 5:30 pm.
He dropped me off at the door in the pouring rain.
I was alone.

It seems strange every time I tell it like this, but it is not for us. Dan makes sure the kids are okay. I take care of myself. Something about my demeanor made the ER staff take me back quickly even though many were waiting. The pain was so severe I couldn’t lift my head from my hands. My right eye was twitching. Stinging tears were running down my face. I keep a typed medical history with me and a list of current medication. If I’m too sick to tell my story I hope they can piece it together somehow. If nothing else the long list of operations and insane list of pharmaceuticals give me some credibility. In emergency rooms this is gold. It’s been almost a year since I resorted to going there. I hate the process and the place that much. I will only go if my pain is a 10.5 on a scale from 1-10. I live at a 4 or 5. Every single day I hurt. This was so much worse. This was scary worse.

As I laid on the hard stretcher with no pillow, I waited and tried to pray, but mostly I listened to the stories happening around me. In the holding bay next to me a woman was wailing. She wasn’t in physical pain. She wanted to die. The security guard and nurse kept probing about how many pills she had taken and whether she had any alcohol with them. Did she hear voices? Was she on her way to the crisis center? She was in tortuous pain of a completely different kind. My heart was breaking. I had been that woman before. I could hear the complete loss of identity in her voice. They kept asking the same questions. “What’s your name? Who are you? Where do you live? Who can we contact who cares?”

The doctor decided I needed a lumbar puncture to test my cerebral spinal fluid, CSF, for meningitis. After two attempts to take blood and two IV tries I became filled with anxiety. I had been given 1mg of Dilaudid for pain. If you know anything about me or how EDS affects my body’s processing of medication you know this amount of medicine is nearly placebo. I asked for Toradol. I explained this non narcotic worked the best with this kind of headache. They seemed thrown by someone not wanting to get doped up in the ER. They did not want to give me anything with blood thinning properties before an LP. Because I had this small dose of meds they asked I call someone to drive over in the middle of the night and sign a consent. This has never happened before in my long medical life. My dear parents, just back from Spain and tired to the core, answered my call and came quickly to sign the paper. I was taken down to the empty radiology floor and put face down on the freezing cold table. The same doctor who placed my cath was called out of bed to do my LP. It had to be under fluoroscopy because of the unstable nature of my spine and the brain shunt tubing there. A long needle was placed deep into my back and pulled tubes of fluid from my spine. I couldn’t stop my tears. “How long, oh God?”

Around 2 am I was taken up to the fourth floor to be admitted. I was utterly exhausted and had no real relief from my head pain. Now I was now suffering from all the needles in my arms and back. Then the process began again. My new nurse came into my room, flipped on the overhead lights and asked me the same litany of questions I just answered hours before. I kept thinking of the woman downstairs. “What’s your name? Who are you? Where do you live? Who can we contact who cares?”

One of the overwhelming feelings I get every time I’m admitted is the helplessness and bizarre anonymity that comes with stripping off all your clothes and jewelry and anything that identifies you to put on a hospital gown. You are now just a chart on a computer screen, a case to be discussed, a room whose call bell they hope won’t be rung too often. Even with the best nurses and doctors there is a very real sense of no one knowing you. The longer you are there the feeling of being institutionalized grows. Your legs get hairy. Your hair gets greasy. Your hospital issue footies get filthy as you get out of bed over and over again to unplug your IV pump and drag it into the bathroom to pee which you have to do at least every hour because of the bags of fluid they are giving you. For me this is all compounded by the frustration of being stuck over and over again because my veins are so weak and damaged they will barely give labs and my IVs will hold for only hours. I questioned why they couldn’t use this beautiful access in my chest for blood draws and meds and fluids. Oh no, that port belongs to dialysis. We cannot touch it. Okay, but it is my port, and you are repeatedly hurting me. At this point my arms looked like I was the worst skilled IV drug user ever. They were covered in tracks and bruises. A new IV team finally found a vein in the top of my shoulder that was a virgin and held. I asked for Tylenol. We can give you more Dilaudid they said. It took four hours to get an order for Tylenol from the doctor and the pharmacy to send some to me.

By Tuesday morning I wasn’t any better, but I began to feel frantic and caged. At least once every hour I fantasized about ripping my IV out and escaping. Why in the world did I come here where no one knows who I am? I’m Monica Kaye. I am the wife of a prince. I am a mother to two beautiful daughters. I am chronically ill but refuse to quit fighting. I believe in Jesus, and He is the only reason my Hope remains. I wished I could wear a sign or hand them a copy of Gauntlet With a Gift to tell them my story. I wanted them to know this snapshot of a sick woman getting treatmeant for some weird autoimmune disorder called PANDAS who came in with an unbearable headache didn’t explain me at all. This list of weird disorders called Chiari, Ehlers Danlos Syndrome, Dysautonomia, Mast Cell Activation Disorder and more were not ME.

After being “released” on Thursday I came home to sleep until my final pheresis treatment on Friday. Over the weekend I slowly began to steep myself back in truth. I kept thinking about the woman behind the curtain in the ER. I continued to think about my own identity in all this brokenness. Sunday morning I opened Paul David Tripp’s New Morning Mercies: A Daily Gospel Devotional to find this message in answer to my heartache.

Who in the world do you think you are? I’m serious. Who do you think you are? You and I are always assigning to ourselves some kind of identity. And the things that you and I do are shaped by the identity we have given ourselves. So it’s important to acknowledge God has not just forgiven you (and that is a wonderful thing), but he has also given you a brand-new identity. If you’re God’s child, you are now a son or daughter of the King of kings and the Lord of lords. You are in the family of the Savior, who is your friend and brother, You are the temple where the Spirit of God now lives. Yes, it really is true–you’ve been given a radically new identity.

The problem, sadly, is that many of us live in a constant, or at least a rather regular, state of “identity amnesia.” We forget who we are, and when we do, we begin to give way to doubt, fear and timidity. Identity amnesia makes you feel poor when in fact you are rich. It makes you feel foolish when in fact you are in a personal relationship with the One who is wisdom. It makes you feel unable when in fact you have been blessed with strength. It makes you feel alone when in fact, since the Spirit lives inside of you, it is impossible for you to be alone. . .

So if you’re his child, ward off the fear that knocks on your door by remembering who God is and who you’ve become as his chosen child. And don’t just celebrate his grace; let it reshape the way you live today and the tomorrows that follow.

Our family photographer just sent me the files from an anniversary photo shoot of Dan and I from February 2011. The above picture of me is from that day. Danica was still in her Minerva brace and wheelchair. I had come through my hysterectomy in August, 2010 knowing I needed a bowel resection, but I was literally breathing the 24/7 care my Danica needed not realizing how each day was breaking me just a little bit more in every possible way. Since this photo I have had ten of my nineteen surgeries. My body resembles almost nothing I see there. I barely remember who that beautiful woman was, but I know who I am today.

I am more than flesh and bone.
I am a daughter of the King of Kings.
The Spirit of the living God resides in me.
I am not alone.
I will never be alone.

(I am done with my treatments and had my levels tested yesterday. I am waiting to hear if they are low enough to have my catheter removed. I will begin the chemo drug for six months to suppress the antibodies from returning in hopes this invasive treatment can be slowed or avoided altogether. Please pray for my body to respond well to the new drug and for it to work as anticipated without toxicity or drastic side effects. Please be in prayer for a trip to Maryland on April 29th. I will fly alone (there’s that word again) and have a tough day of a flexion and extension MRI and then late appointment with my neurosurgeon. I will stay the night and fly home the next day. Like always the financial aspects of my out of network treatments here and these trips burden us. The emotional and physical toll are an even greater weight. My instability from C4-6 or 7 is causing a great deal of pain. I am wearing my collar more and more and praying the removal of inflammation from the pheresis will help with my symptoms. Thank you to each one of you who has been praying for my family and I, making meals, sending letters and cards, and especially those who mailed care packages to the girls during their spring break with a sick mama in bed. You are God’s hands to us. Bless you. Our Hope remains!)

What in your life causes you to lose sight of your identity? What sign would you wear so others would really see you and know you? When you begin to feel alone what Scriptures or songs bring you back to the truth of who you are in Jesus Christ?

Photo by Grace Designs Photography

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Taking up My Cross in the Valley of Vision

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When I was young I was completely infatuated with my dad’s library of Banner of Truth books. One of my favorite books he owned was The Valley of Vision: A Collection of Puritan Prayers and Devotions. He has a beautiful leather bound copy now, and I own his tattered and worn copy published November 1, 1975, the month and year of my birth. The top, bottom and side pages are stamped with his name in elegant script. All his books were marked in this way. The Valley of Vision was my first introduction to prayer as poetry which has become a very important part of my spiritual walk. I now have an entire shelf of books that are written prayers. Many of my personal journal entries and very old blog posts end with my own heart cries. Even during the years I spent far from God I kept this book with me. Imagine the prodigal daughter moving from place to place with whatever I could fit in my powder blue, two door, 1992 Chevy Cavalier with dancing bears on the back windshield and a pack of Camels in the center console. In a milk crate of books on the passenger side, in between Sylvia Plath’s The Bell Jar and Elizabeth Wurtzel’s Prozac Nation, was this touchstone of faith. After the Bible it is the single most influential book in my life.

On Ash Wednesday I began my Lenten journey by reading the prayer titled “The Grace of the Cross” from page 172. I copied it and put it in my Bible to pray through daily during these 40 days. Monday I didn’t look at it at all as I forced my way through the motions of devotions and prayer. Yesterday I didn’t even open my Bible. This morning, after my family left for work and school, I sat here in my nest chair with my coffee and reached for the photocopy sticking out of my Bible. I only had words of lament in my mind and heart, but I knew it was time for this prayer:

O MY SAVIOUR,

I thank thee from the depths of my being
for thy wondrous grace and love
in bearing my sin in thine own body on the tree.
May thy cross be to me
as the tree that sweetens my bitter Marahs,
as the rod that blossoms with life and beauty,
as the brazen serpent that calls forth
the look of faith.
By thy cross crucify my every sin;
Use it to increase my intimacy with thyself;
Make it the ground of all my comfort,
the liveliness of all my duties,
the sum of all thy gospel promises,
the comfort of all my afflictions,
the vigour of my love, thankfulness, graces,
the very essence of my religion;
And by it give me that rest without rest,
the rest of ceaseless praise.

O MY LORD AND SAVIOUR,

Thou hast also appointed a cross for me
to take up and carry,
a cross before thou givest me a crown.
Thou hast appointed it to be my portion,
but self-love hates it,
carnal reason is unreconciled to it;
without the grace of patience I cannot bear it,
walk with it, profit by it.
O blessed cross, what mercies dost thou bring with thee!
Thou art only esteemed hateful by my rebel will,
heavy because I shirk thy load.
Teach me, gracious Lord and Saviour,
that with my cross thou sendest promised grace
so that I may bear it patiently,
that my cross is thy yoke which is easy,
and thy burden which is light.

The past two days I have been buried in the self love and the carnal reason. I have turned my mind and heart away from the Grace that brings the patience to bear this pain, walk this pain and even profit from this pain again. Knowing what He suffered for me how can I shirk this load?

Today I am taking up my cross, my appointed portion in this life, and carrying it through His amazing love and sacrifice for me. This is easy. This is light. This is GRACE. This is the essence of my “religion.”

May I rest in ceaseless praise for the minutes, the hours, the days and even weeks God gave me a higher view, a healing view, a hopeful view of where I’d been living.

May I rest in ceaseless praise for this return to the “Valley of Vision.”

(If you’ve never heard Sovereign Grace’s album of songs taken from this book you must find time to download it and add it to your playlists. This is the beautiful song taken from the title prayer. It is on repeat today.)

Photography by Cindee Snider Re. Used with permission.

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What Can I Bring to Your Fire?

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Janet and I

This blog post was originally published on August 18th, 2013. Friday was Janet’s birthday. I can barely remember what the landscape of my life looked like before knowing and being known by her. I celebrate her every day.

I have seen them in cities, and in my own neighborhood,
nor could I touch them with the magic that they crave
to be unbroken. Then, I myself, lonely,
said hello to good fortune. Someone
came along and lingered and little by little
became everything that makes the difference.
Oh, I wish such good luck
to everyone. How beautiful it is to be unbroken.
–Mary Oliver

It’s a quiet morning here because Dan has taken the girls to church. I woke up locked in my room. My neck doesn’t move at first when my eyes open. I remember I had surgery, and I need to heal today. This is what Sunday looks like for me. Healing is my one job. I call out to have Dan bring me coffee. Normally I would go out to my nest chair and drink it while everyone else comes to life around me. Twix will crawl into my lap for snuggles and then Danica takes a turn. Today I can’t seem to move. I call Dan again to please come and get out certain pills for me to take that may raise my cortisol level, help with pain and also loosen up my poor neck. He seems annoyed. He doesn’t ask me how I slept, although I ask him, and he doesn’t ask me if I need something to eat or nibble on before I swallow six super strong pills on an empty stomach. It doesn’t even cross his mind. I don’t ask. Since I’ve been home it is much like other surgeries. I am put into my room with the door shut. I think my family looks at it as doing me a favor. The kids jiggle the bed which hurts my neck. They are loud and silly. Mostly because of the pain and meds too much input sets me off. Still, I have missed them incredibly and being alone hurts in the worst way. As they all leave for church the attitude is negative. I asked Delaney to read me Psalm 37 out loud. It’s one of my favorites. All I can feel is this rope of bad energy tightening around me. The house is a mess. As soon as they leave I cry for ten minutes straight. You know the kind of sobbing where you are just gross snot pillow soaked blotchy face and chest heaving crying? I am given a week in Maryland and that is it. I have to be better. Tomorrow Dan will go to work. I will be here alone with my girls. Delaney starts school Tuesday. Wednesday Danica has kindergarten preview and Thursday they will both be back full time. In between here I am supposed to just be mom. I’m supposed to lift up this neck and do all the things people say are stupid and careless to do following this surgery but there is no one else to do them. I am not supposed to move my neck in flexion or extension for a month. In other words, hold very still. Aside from the surgery where I went away to heal at the lake house this is how it has been. My family can barely scrape together enough time off and energy to do the mom is in the hospital thing. When my ride dropped me off yesterday my dad was waiting with his keys to leave. I asked him to please wait until Dan got home. I haven’t heard from my mom at all. I just can’t be alone yet. Dan does not function without me. He is angry at this situation. I get this. It’s maddening. But I wonder if anyone is thinking about what it must feel like to be in this body and mind and soul. Do you know what incredible shame I feel to be causing all this over and over again? He cannot come and sit with me and talk to me about how I am feeling. Even in the hospital he sat there the entire day after my surgery saying nothing. I felt so insanely alone and guilty and wanting to just let him off the hook for all of this. I always want to say to him, “You can run. It’s okay. I would totally understand.” This surgery is huge. It’s a big deal. For me, even more than the physical, it’s a mental and spiritual choice I made to try to be better. I did this only four weeks after a major abdominal and pelvic surgery. I made this choice because my husband has been given an opportunity to perhaps take on a larger role at work, my girls start school this week and last year I was completely bedridden when school began with another surgery and then another and it hurt Danica’s adjustment greatly, and my mom is completely unavailable in every way this time of year. Her family is the 600+ students entering those doors Tuesday and my dad is preparing to go to China and India for a month and good grief, how much longer can things keep being about me?

Why after all these years of blogging am I saying these things now?

Because something changed me.

Ninety nine out of one hundred of you may feel like this comes across as ungrateful, but if you know me you understand my spirit is only full to overflowing for every ounce of love and support from every corner of the universe, especially the sacrifices my parents have made. Still, what was given to me this time was something I have needed since I was a child. There has been a deep longing for a mother to care for me. Someone to just focus on me and build relationship. I have needed it so badly it is actually part of my sickness. I know this.

There she was.

An angel.

A woman I didn’t know personally until two weeks ago made this crazy offer. I didn’t really even think she was serious at first. She offered to come after my surgery and get me since Dan needed so desperately to work. Everyone who heard of this felt it was very strange. She bravely drove with her own physical limitations from Ohio to Maryland. She fed me. She took me on a hilarious trip around the beltway for prescriptions. She rubbed my neck and shoulders. I don’t think anyone had offered to touch me like that in months. Did you know you need human touch to be okay? I have been like an orphan tied to a crib. Failure to thrive. I need to be touched. She listened to me. I listened to her. Her daughter is sick with the same conditions I have. I think perhaps the windows into one another’s roles in all this was one of the greatest gifts. We talked for hours and hours and only scratched the surface of what our souls could share. I would fall asleep mid sentence and then wake and begin where we left off. She would quietly slip off as if knowing I needed space and then appear just when I was needing her. Gift. Gift. Gift. When everything else falls away WE are gift.

Before Danica’s major surgery in Cincinnati I wrote this post with a link to a song by Christa Wells that is truly my life song. I am amazed when one of the “thousand things” shows up. Christa’s new CD “Feed Your Soul” was released on Tuesday, the day after my surgery. I downloaded all the songs first thing that morning, and they played over and over in my alone time in the hospital. The song Come Close Now describes what Janet did for me.

God, every single step of this arduous journey You have given me Dayenu. It would have been enough. This present of knowing and being known makes me healed in places I thought would be broken until heaven. Even in my sadness today I understand I can only meet people where they are in their own journey. All the rest You will care for perfectly as I burn. Thank you for giving me someone to walk into my fire and just feel the heat of all this without shrinking back.

Do you know someone who is sitting in the burn today? Go close. Sing. Hold them. Be there in the fire. It will make all the difference.

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Heal the Wound but Leave the Scar

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Shadows
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It was our first night. After an exhausting day of travel we thought we would check in to the hotel and crash. Instead, the first whiffs of fresh mountain air gave us a second wind. We felt the enormity of the gift we were given in this time away and didn’t want to waste a minute. I changed out of my airport clothes and slipped my freshly pedicured feet into open toed shoes. We floated down the grand lobby staircase hand in hand and settled in to a cozy spot on the expansive patio overlooking the city lights. I’d been there before. I loved sharing the nightly tequila ritual and toast and special menu secrets at Salud. We sipped drinks made with cucumbers and fresh agave juice. Something shifted as we bared our souls in several hours of conversation under the Tucson stars. We hadn’t wanted to admit the way we were holding insecurities and hurt in tight fists. Now we wondered out loud. How long had we moved through the motions of marriage? Recognizing one another’s unique fragility we cared too much to make even the slightest movement. We knew even one bump had the possibility of upsetting our delicate balance of survival. With open hands and hearts we purged the pain and sadness and cast it all in the fire on our way up to our room. It was a fresh start like only Jesus makes.

The next morning we woke tangled up in silky white sheets and duvet after the longest exhale of love. It had been years since we had the time and place, desire and energy to slow our intimacy to the metronome of breath. For the first time in almost eight years I let him fully see me, and he wanted to look. He traced every single scar with his fingers, and we took turns telling the story together. Not my story. Our story. I never doubted we were one heart, but something about all those wounds often made one flesh a difficult proposition. With every surgery and every long recovery I felt a gulf widening between who I once was to him and who I had become. Suddenly I could see in his eyes and hear in his voice a truth I’d not known before. He loved me even more because of the suffering not in spite of it.

Today marks a week since we returned home. When I stepped out of the plane onto the jet way here the temperature was below zero. I began to cry. I rounded the corner in the airport to see my Danica running towards me bundled from head to toe. I was wearing ballet flats with bare tan feet exposed and no coat. I hugged my sweet girl and cried even harder. Coming back here, a place I know causes very specific pain and many of my symptoms, was heart breaking. Dan looked over and winced as he saw the Monica Kaye he had reclaimed already slipping away.

It was a week ago I exiled myself with my Savior for His forty days in the wilderness. I’m daily sitting with Christ as best I know how. I’m listening to His heart as He prepares for the immense sacrifice He’s been asked to make on the cross. I am brought face to face with a God who knows every ugly sin I’ve committed or will commit. He sees my unspeakable mistakes and feels the bitter shame that wounded Him. His humanness, his hunger, his temptation, his pleas for release from this before the world began plan break me again and again. He is God made man. He sympathizes in every way without sin. My redemption could only come through a sacrifice this understandable and this unexplicable.

I’m walking closer to the days when I will see Him crucified. The wilderness, however uncomfortable, is just a preparation for the week when I will have supper with Him, tell Him I love Him, turn around and deny Him and then watch Him take the lashes, carry the cross and be wounded for my transgressions. At the last hour He will be completely forsaken by His Father and suffer hell for me.

When I’m face to face with Him I know for sure the scars I bear both inside and out are completely redeemed. His dying love stops my breath. His resurrection starts it again.

Since Tucson I pray for fresh starts and new beginnings. I long to live in a place that gives me a more whole body and healed spirit for my husband and daughters. I ache to take all this pain and turn it into a beautiful ministry for others walking this similar road.

When I’m face to face with Him. When I remember His love for me. I trust Him completely.

Every cut of my flesh has healed into a bumpy red reminder of God’s mercy to me. Every sharp memory of sadness and sin has kept me on my knees even though I’m completely free.

Dan and I hiked several miles up a mountain into the Sonoran desert. On our way we stopped to build Ebenezers. Each of us chose seven large stones to symbolize our seven years of tribulation. They stand as altars to God’s faithfulness. We were living something impossible. We were away together on vacation. I was hiking. I was breathing. I was well. We lifted prayers of gratitude as we moved on and my Dan began singing softly as he led the way.

Come, thou Fount of every blessing,
tune my heart to sing thy grace;
streams of mercy, never ceasing,
call for songs of loudest praise.
Teach me some melodious sonnet,
sung by flaming tongues above.
Praise the mount! I’m fixed upon it,
mount of thy redeeming love.

Here I raise mine Ebenezer;
hither by thy help I’m come;
and I hope, by thy good pleasure,
safely to arrive at home.
Jesus sought me when a stranger,
wandering from the fold of God;
he, to rescue me from danger,
interposed his precious blood.

O to grace how great a debtor
daily I’m constrained to be!
Let thy goodness, like a fetter,
bind my wandering heart to thee.
Prone to wander, Lord, I feel it,
prone to leave the God I love;
here’s my heart, O take and seal it,
seal it for thy courts above.

My song today.

Heal the wound but leave the scar.
A reminder of how merciful You are.
I am broken, torn apart.
Take the pieces of this heart and
Heal the wound but leave the scar.

I’ll build an altar of the rubble that You found me in and every stone will sing of what You can redeem.

Don’t let me forget everything You’ve done for me. Don’t let me forget the beauty in the suffering.

Heal the wound but leave the scar.

(This beautiful song by Point of Grace has been on my “healing” playlist for years.)

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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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I Will Follow. We Will Follow. A Dan Post

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Family

It’s been quite some time since I’ve written anything for Monica’s blog. I’ve done Christmas letters and year-end reviews for our family in the past. I usually say something hopeful and overused like, “Next year will be our year!” I am finally realizing this is much like making resolutions you know you cannot keep. My outlook for 2015 does not differ much from what transpired in 2014 or the slowly passing years before. This is not pessimism. It is our reality. The coming winter months are the hardest on Monica. We are one in many ways. Most noticeable is I am not okay when she is not okay. I’m forgetting who she was before all this. I’m forgetting who I was. This frightens me. At the same time I realize this leaving behind our early life together and our old selves is the work of Grace. This change may have never happened had it not been for our countless trials stripping us of all we once held dear.

I don’t write often enough but hopefully this post should develop a common thread for you to follow throughout the paragraphs. I do love to tell stories.

When the very first iPad made its debut years ago, I was fortunate to purchase one with the help of a few donated gift cards to a local retailer. Though I’m in the tech industry and an “IT Professional,” I usually get all the electronic hand-me-downs from my wife who in turn gets hers from her parents. I’m typing on her very old laptop that will lose power without notice as the replacement battery failed months ago. The chance to own an iPad was an exciting surprise. Those with an iPad understand it makes an outstanding gaming station for kids, so it quickly became Danica’s iPad. It was loaded with free games and helped pass the long hours in her little “storm trooper” body cage and wheelchair. My intentions were to cherish this first edition iPad forever until Danica dropped it recently on a cement sidewalk. It functions like new but the glass screen is shattered. I loaded up a few hundred family photos and use it as a digital album now. From afar our family pictures look fine but up close you’ll notice the images have jagged wandering lines running through them.

In our great room we have an entire wall dedicated to “print” family portraits. There are twelve framed photos in all. They are all stunning natural light pictures taken by a friend of Monica’s who has gifted her time and efforts over the years capturing these moments for us. Over our mantel is a beautifully framed piece of art. It is a Marc Chagall etching with watercolor of the Prophetess Deborah. A friend of Monicas collects art and loans pieces to us to enjoy. To round out the room we have an old Craftsman bookcase inherited from Monica’s maternal grandmother. Our full glass storm door allowing the warming and healing sun into our home was a present from her parents. Our living room is basically how Monica and I dreamed it would look but with very little from our own efforts. There is not a day we do not feel gratitude for this sense of place after moving from our home and selling most of our possessions to live in her parent’s basement those eighteen months in 2011-2012.

Early in our relationship and marriage our house was our idol. We bought and sold new homes during the real estate boom. Monica loved interior design. We spent much of our time on weekends hunting for the right furniture, rugs and art for a space. While selling one of our last homes in Leesburg, Virginia the couple who purchased it requested a separate transaction to buy almost everything in our house. I believe God took our home from us so decisively to uproot the temptation to ever make a place matter more than one another. We hold things loosely. We know at any moment this could be lost, and we would survive.

Nice cars were another idol I held close. When money was not a concern I would routinely trade in a BMW for a Lexus or an Audi. I bought an SUV so I could tow my waterski boat around D.C. to impress my then girlfriend, Monica. The car I drove was an important outward display of who I thought I was. God stripped me of all this. If it were not for donations, I could not have afforded any type of vehicle the past six plus years. When Danica was first sick, a foreign exchange student Monica’s parents housed was returning to South Korea. He lived with them for years and became like family. He gave us his old Jeep when he left. It did not have working heat, and I drove it back and forth to Fairlawn during the freezing cold. I loved it because of the kindness it represented and hated it because of the humility it was teaching me. The Jeep ran as long as it could. Many months later, a friend of Monica’s donated his 2003 Mazda SUV to us. It was after owning this Tribute for a while, I no longer dreamed of new vehicles. The car simply runs even though you have to start it twice every single time. The kids actually love the cloth interior, and it hauls my cardboard, glass and plastics and yard trimmings to the recycle center. We have had to put money into it for things you would expect in a car this old, but it is faithful. The friend took really good care of the car, and I am extremely grateful for his gift. It is proof that being good stewards of our belongings pays off in the long run.

Taking care of Monica and our girls is an endeavor I now humbly and gratefully share with many people. The expanding network of love that has grown around us because of Monica’s pursuit of telling our story and keeping relationship is staggering. The gifts I mentioned above are only a fraction of what our family has received since our journey began during Monica’s pregnancy with Danica over eight years ago. From across the United States, here in northeast Ohio and even from other countries, we have opened hundreds of cards and motivational letters. We’ve been given contributions to help meet surgical fees and travel costs, prescriptions and never ending medical bills. Most of all we are covered in countless thoughts and prayers of support. It is an immeasurable amount of love that at first was almost too great for a proud husband and father to bear. It slowly began to change me. It taught me about selfless giving and gracious receiving. It also rearranged my dreams about what I might be able to pay forward someday by the Grace of God.

One of my favorite songs is “I Will Follow” from Chris Tomlin. Though the lyrics may seem simple, the message is often times difficult to accept into one’s life. The song represents the duality in my life comparing my relationship with my wife and my relationship with God. When I return home from work I am constantly cleaning the house, vacuuming, grocery shopping, baking cookies, doing yard work or simple car repairs. I gladly welcome it all. Not only because I have been called to do this, but because my best friend in the world, my wife, and my greatest gifts, my daughters, need me.

I sing these words to my wife whom I love:

Where you go, I’ll go
Where you stay, I’ll stay
When you move, I’ll move
I will follow…

I sing these words to my Heavenly Father:

In you there’s life everlasting
In you there’s freedom for my soul
In you there’s joy, unending joy
And I will follow

This is not the life I imagined when Monica and I first met. This is not the life that makes a man proud. I have few personal accomplishments and almost complete dependency on others. This is the life that makes me grateful for my wife, grateful for our girls and grateful for our friends and close family who show God’s love to us over and over again. I am undeserving of this life, but those of you in our network understand what is at stake. Though the memories are cracked, the family pictured on the iPad is worth fighting for.

We have great plans for 2016. We see 2015 as one of maintenance for Monica’s treatments and more healing. Danica’s Spring Cincinnati scans and appointments represent a huge milestone in her recovery, and Delaney will finish 7th grade. We have said this many times, but it bears repeating. We would not be capable of trust and even peace in the face of despair if it were not for all of you. I now understand you are my friends and family too. We cling to hope. We breathe Grace. We are a family fighting our way through what some days feels too hard. Your love is a strong army behind us. One day we hope to give back in part what we have received. We dream of the ways we could use our story to help others on a similar journey. We know for sure nothing is impossible.

You don’t know my wife the way I knew her. There are parts of her story still to be told. You don’t know my wife the way I love her. When I married her I told people she was a fighter. I never imagined how true this was. We are stronger because of the brokenness. We are one because of the shattering and healing. Together we are finding life, freedom and joy as we follow.

Photo by Grace Designs Photography

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