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Feb 4
2015

If . . . then I know nothing. Day 3. And a giveaway

by Monica

If I am content to heal a hurt slightly, saying Peace, peace, where there is no peace; if I forget the poignant word ‘Let love be without dissimulation’ and blunt the edge of truth, speaking not right things but smooth things, then I know nothing of Calvary love.

The entire month of February I will be posting If questions from Amy Carmichael’s powerful little book by the same name. I invite to you follow along this journey. I pray you will be drawn to Calvary love.

I am giving away a copy of this book every Sunday this month and a little olive wood cross. To enter please share one of the daily If posts on social media (Facebook, Twitter or Instagram) with the tags #CalvaryLove and #If. Add a comment here on the blog post you share.

Let’s meet at the foot of the cross together.

Photography by Cindee Snider Re. Used with permission.

Feb 1
2015

Calvary Love. A Month of If

by Monica

Three years ago, while I was recovering from my brain decompression and fusion at a friend’s beautiful lake house, I had the blessing of entertaining angels. In May, 2010, a girl across the world reached out to our family. She became one of the most faithful to love and pray for us on this journey. We became friends in a way that I never thought possible without meeting face to face. She and her mum traveled here from Australia to get her settled so she could begin her call to seminary. That snowy January night we shared a meal together. After dinner we moved to the living room and sat across from one another in front of the crackling fire. The fellowship was sweet. I found myself bearing my heart to them with an ease I rarely feel because of my pride. We wept. They prayed with me. They asked things of God for me that I have never really been brave enough to ask for myself. The time slipped away, and it was very late when we headed to our beds. I loved having a place for them to stay. My particular gift of overnight hospitality had been buried because of circumstances, and it meant so much to be able to offer them such a pleasant place to sleep even though it wasn’t my own home. In the morning dear Bethany came down and gave me a gift. It was a little blue hardback book. I gasped when I saw the two gold letters imprinted on the binding.

IF

When I was a little girl I found my mother’s copy of this book by Amy Carmichael. I didn’t know much about Calvary love then, but I was drawn to the simple paragraphs and the pressing of the heart. I was drawn to the white space left on each page as if to say,

“STOP HERE.
YOU CAN ONLY ABSORB THIS TODAY.
MEDITATE.
PRAY.
LIVE THIS BEFORE YOU MOVE ON.”

In the short time we had together Bethany reminded me how powerful words are, and how my words here on the screen had changed her. It was God once again speaking to me about how this journey is definitely not just about us. He is working in ways we may never know until eternity. He was asking me to keep telling the truth and pointing to Him. He was asking me to suffer awhile longer because He suffered for me.

I keep the beautiful vintage copy of Amy’s book on my prayer bench. I return to it over and over again.

She writes this in the opening of her soul searching book:

There are times when something comes into our lives which is charged with love in such a way that it seems to open the Eternal to us for a moment, or at least some of the Eternal Things, and the greatest of these is love.

It may be a small and intimate touch upon us or our affairs, light as the touch of the dawn wind on the leaves of the tree, something not to be captured and told to another in words. But we know that it is our Lord. And then perhaps the room where we are, with its furniture and books and flowers, seems less “present” than His Presence, and the heart is drawn into that sweetness of which the old hymn sings.

The love of Jesus, what it is – None but His loved ones know.

Or it is the dear human love about us that bathes us as in summer seas and rests us through and through. Can we ever cease to wonder at the love of our companions? And then suddenly we recognize our Lord in them. It is His love that they lavish on us. O Love of God made manifest in Thy lovers, we worship Thee.

Or (not often, perhaps, for dimness seems to be more wholesome for us here, but sometimes, because our Lord is very merciful) it is given to us to look up through the blue air and see the love of God. And yet, after all, how little we see! “That ye may be able to comprehend what is the breadth and length and depth and height and to know the love of Christ which passeth knowledge” – the words are too great for us. What do we comprehend, what do we know? Confounded and abased, we enter into the Rock and hide us in the dust before the glory of the Majesty of love – the love whose symbol is the Cross.

And a question pierces then: What do I know of Calvary love?

The entire month of February I will be posting If questions from this powerful little book. I invite to you follow along this journey. I pray you will be drawn to Calvary love.

I am giving away a copy of this book every Sunday this month. To enter please share one of the daily “If” posts on social media (facebook or twitter) and comment here on the blog post you share. Let’s meet at the foot of the cross together.

Photography by Cindee Snider Re. Used with permission.

Jan 29
2015

Gorgeous Possibilities

by Monica

I’ve been quiet about the results of my latest plasmapheresis treatment for many reasons. I posted a small update on my gofundme account, but I have been holding much of my progress close. There are moments and sometimes hours of certain days when I feel completely well. I’m afraid to even speak of these for fear they will vanish into thin air.

This was my third round of treatments in a year. If I weigh the good days with the bad they still lose in numbers, but they win in every other way.

Today I received my statement for the treatments in December. The above is just the hospital portion. It is staggering. God found a doctor and hospital willing to take this chance on me. Part of the deal was I would be responsible for the difference between the contracted rate with an in network provider and their rate which is much higher. When you consider my shunt revision in February, the first round of pheresis that was inpatient for twelve days, the IVIG at home, the Meningitis and more hospitalization, the second round of pheresis, the fusion surgery in October and then pheresis again it seems impossible to say 2014 was a “good” year. But it was.

Living with EDS and all means makes for a kind of bipolar existence. The depths are incredibly dark and desperately painful. During these times you doubt the fight is even the right thing to do. It is the heights that convince you every better day might turn into a best. You hope no matter what the cost.

I’ve had some of these days lately. I’m floating in ordinary I count as pure miracle. I cry at the craziest times. The things bringing me the most joy are completely counter intuitive. If you are annoyed by it or dread it I’ve probably been longing for it.

A woman from Alaska who read Team Danica for years panicked when the site went dead. (I’m truly sorry I was not savvy at all about my switch to this site. I’m finding out many I never knew were reading and praying, and I left the story abruptly. Forgive me.) She eventually found us here and contacted me. She was waiting for the right time to reach out. Her gift was a year membership to our local YMCA. This is something we never would have given ourselves, but it has become this beautiful way for all of us to venture outside these walls and grab at something called wellness. Dan is able to continue his fitness which has been a lifeline for him. The girls can swim which is the closest thing to vacation they’ve had in a long time. I can walk. My puffy flesh and crumbling bones are remembering how to move. My veins are pushing blood to my head and heart. I breathe in and out with a mantra, “Thank You. Thank You. Thank You.” When I think we’ve seen every possible kindness someone appears like an angel and finds a new way to remind us we are not alone.

I’m picking my girls up from school faithfully. Every time I see Danica in the car rider line and Delaney breeze out of door one I tear up. I’m there. I’m waiting with a smile and love. Delaney used to say she would anxiously approach our front door every afternoon when my mom would drop them off. They would ring the bell, and I would appear in the sidelight. She said she could tell how much pain I was in by the expression on my face. Do you see how life altering these normal everyday things are to us?

I’m out of bed when Dan gets home. I’m doing little things around the house to ease his load. I’m able to control the insane OCD behavior that was always my downfall before and find gentle ways to reclaim my home. We are falling in love again. Every time I come out of the dark Dan is waiting there. He never forgets the person I am. Underneath the train wreck eighteen surgeries has made of my body and the wasteland this kind of suffering inevitably has made of my mind and heart he believes in me. He finds me again and again.

I’m meeting people face to face. Oh how I’ve needed this. I’m inviting others to come sit on my yellow couch and remind me how to do relationship outside a screen or a phone. I’ve met friends for coffee, had brunch, gone to the movies, prayed holding hands and hugged them all. Yes, if you touch me I will cry. I’m convinced sick people need to be touched to be healed. Failure to thrive is a real thing. I made a new rule in our house that every hug has to last at least thirty seconds. We count it out. If two of us are hugging and someone sees us they pile on. I don’t yelp in pain when someone touches me. I’m less prickly, and this makes all the difference.

I have doubted what my breath is worth when held up beside the ledger of debt and the great emotional cost to those who love me. It is in these days when the sun burns through the clouds I know for sure I must press on and save the life I can. My God wrote this story before I was a human thought, an act of love and a stirring in my mother’s womb. This relief, however long, is a miracle.

Christa Wells wrote this awhile ago on her blog, and I hold it close as I continue to tip toe through what I believe about beauty from ashes. I can still smell the burning. I know for sure He will ask me to walk through the fire again, but today all I see is redemption, restoration and renewal. All I see is Jesus paid it all. All I see are the gorgeous possibilities giving me healing and life.

My Hope remains.

When something life-giving falls from us who are riddled with want.
A word of kindness or sympathy.
An inconvenient act of generosity.
Isn’t it a miracle?

If something touched by our trembling fingers grows gold and winged, soars . . . finds entrance to another human soul. Isn’t it a miracle?

When a child looks you in your tired eyes and reaches a small hand, adoring.
Isn’t it miraculous?

When a friend hears the pained confession,
And stays.

When we find ourselves swept off our seats in laughter, even though.
Is it not the most welcome kind of miracle?

When work comes along, finally.
When the work is completed.

When an improbable friendship is born.

When we find a fragile opening to forgiveness.

When something lost is found.
Something broken healed.
Something caged released.

When one creature carries and nurtures another in the caverns of its own body.
When the crocus smiles from snowy earth,
And strangers share a meal.

When brothers and sisters pave new ways.

When suffering sweeps over and still we see light and truth and love and hope.

When the artist creates.
When the creator loves.
When the lover saves.
And the Savior lives!

May we be moved to see the marvels of things in motion here.
The miraculous, gorgeous possibilities which rise from the ashes of ”reality”
Providing what is needed for life.

“Now all glory to God, who is able, through his mighty power at work within us, to accomplish infinitely more than we might ask or think.” Ephesian 3:20

What ordinary miracles are you celebrating this week? What gorgeous possibility are you hoping and praying for?

Jan 20
2015

Learning and Healing in Relationship

by Monica

“Healing is impossible in loneliness; it is the opposite of loneliness. Conviviality is healing. To be healed we must come with all the other creatures to the feast of Creation.” –Wendell Berry

One of the most remarkable and constant threads in our family’s walk through suffering is the amount of love and support we have received from others. This began with just a few local friends. It bloomed and grew to span all the way across the United States and the world. We have been wrapped in a network of love much larger than our geographical location could provide because of the power of story and the internet.

Early in our journey we had a home bound and wheelchair bound child with a year ahead of us in restrictive healing. I was a very sick mom in and out of the operating room with a very long road of surgeries and treatments ahead of me. Church was impossible. Book club was impossible. Participation in the charity groups who had loved us was impossible. I received countless cards and letters and emails but very few phone calls or actual visits. People naturally felt uncomfortable talking about their next planned vacation, big home improvement project, new shoes or even silly little gossip around a family that was literally just trying to survive the day. I understood this. Over time it caused an aching desire to participate in real face to face relationships and not just those behind a keyboard and screen.

We need community. This same girl who has always in some way loved being alone was drawn into this scary place of sharing in the blogosphere. It connected my family and me with people near and far we never would have known without technology. It brought many of the prayers and much of the provision we desperately needed. In all the good growing from the blog the lack of meeting and knowing face to face brought a hollow understanding of how God intended us to see our ultimate need for Him. In the flesh is where the work and the reward of relationships are really cultivated. Tim Keller wrote in his book King’s Cross: The Story of the World in the Life of Jesus, “If this world was made by a triune God, relationships of love are what life is really all about.” The Father, Son and Holy Spirit are a continual reminder we are not soul freelancers. We need corporate worship. We need to physically be with the Body. We need to understand our brokenness is shared in some way by the whole.

In November I attended The High Calling retreat in the Texas hill country. It was a stretch for me in every possible way to join a group of people for an entire weekend in this intimate setting. I’d been begging God to restore some kind of community in my life. This was my answer. Everything God had given me, shown me and blessed me with needed the breath of life that could only come from opening my heart and being with people again. It was in this place my story began to take its’ final shape and became ready to be told beginning to end. I needed to come together with others to make my healing viable. I needed to taste the fruit that only comes by taking the risk of letting people into my life through the door of my heart to remind me how to do fellowship, friendship and love.

I am fumbling through this new found realization. As I have periods of being more well I need to relearn life from others. I need real relationship. I promise you I will be the strange lady who bursts into tears at the most inopportune times. I will not be good at small talk for a while. You will be surprised how quickly I want to talk about heart matters and soul issues. You will need to remind me to not be so serious. You may have to ask me to quit talking about the minutiae of neurosurgery and science of autoimmune illness. You will need to share your joys with me, because I DO care about your beach trip or your new countertop. I really do. I want to hear about the conversation you had with your kids in the car or your latest and greatest crockpot recipe. It will take some time and some effort, but I need you to heal.

It is authentic knowing and being known that points to the life sustaining relationship I have been given by Grace with Jesus Christ. Real bones and real flesh given in sacrifice for me encourage me to live and love more like He did in relationship. I need to finally get comfortable wearing the sign that calls me out as the poor and the brokenhearted. I need to surrender in the most uncomfortable places where I believe He does His greatest healing. Adele Calhoun sums it up beautifully in her chapter on community in her Spiritual Disciplines Handbook: Practices That Transform Us:

My life has been shaped by men and women who loved me and handed me something of God in their very human lives. Their spiritual practices were woven into the fabric of their lives on the loom of relationships–both with God and with me. They had no halos. They told me the truth about the good, the bad and the ugly while passing on the lore of the spiritual disciplines they had traversed. I believe this is the way spiritual disciplines are to be learned. We are to learn them in relationships.

Has technology slowly siphoned your participation in face to face relationships? Do you use the availability of media for worship and teaching as a replacement of gathering together with a community of believers on a regular basis? What is one way you could tangibly reach out and touch someone today?

Photography by Cindee Snider Re. Used with permission.

Jan 15
2015

Dear Mom. A Letter from Delaney

by Monica

“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

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.

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

Jan 14
2015

Taste and See. And a giveaway

by Monica

“There is nothing so secular that it cannot be sacred, and that is one of the deepest messages of the Incarnation.”–Madeleine L’Engle

Sometimes people ask me outright and others wonder behind me about my pursuit of any kind of better health in the face of great risk and staggering cost to my family. This fight has also begged your own love for us over and over again. I could stop. I could curl up here in suffering and not battle anymore. I am fully aware I may even live longer if I did this. The law of averages suggests something will eventually go wrong in one of my surgeries or treatments. Here’s the thing. I don’t want to live long and not well. Because of my recent plasmapheresis treatment I have the opportunity to grab a few more months of sweet moments with my family and friends and do real work on finishing my book before a relapse or another vertebrae slips into my spinal cord. I am determined. I will TASTE and SEE the Lord is good, and I will tell about it.

While waiting at the hospital for my tunneled catheter to be removed on Wednesday my dad pulled out a book he was beginning to read. He didn’t just suggest it to me in passing. He opened it up to have me read specific treasures he had underlined. My reading life is an entirely different post for another time. Suffice it to say two thirds of most my days are spent reading or writing. I typically read books twice. The first time through is for comprehension and the second for underlining, page flagging and copying beautiful or meaningful passages into a journal or a file on my computer. I also write in the margins. I know I began this practice because of my dad. For as long as I can remember he has always read with a little plastic ruler and a black pen in his hand. The book was The Things of Earth: Treasuring God by Enjoying His Gifts by Joe Rigney. In those few moments of his sharing a few key passages and our discussing them I knew I needed this book. Thanks to the wonders of Amazon Prime it arrived late Friday afternoon. I read late into the night.

Much of the wisdom refutes an ugly root of guilt I feel when experiencing good things and especially when producing something that might be considered good by others. I can only explain this as a seed of rogue theology planted in childhood that overemphasized self denial as an unbalanced path to godliness. Happiness need not apply. Joe talks about this uncomfortable tension between dying to self while maintaining a right relationship with the temporal world around us and the very real danger of idolatry as we approach earthly things, but he shores it up with this truth.

“Given the persistence of this threat to true worship of God, one way to address idolatry is to seek to thin out creation, to hold it loosely like a hot potato, and to be wary of its delights and pleasures. We recognize the potency of God’s gifts, so we tread lightly, sticking to the shadows and refusing to plunge into the ocean of earthly pleasures . . . Christians need to be reminded of the goodness of God’s creation and God’s approval of it for our joy.”

Saturday I was blessed to take my Danica and my niece to see Disney’s Frozen on Ice. We bought three tickets back in September when they went on sale. It was our Christmas gift to Danica. Making any kind of future plans is a high stakes gamble for our family. One of the specific goals of my recent treatment was to be well enough to follow through on this. Originally Dan and I planned to go with Danica. The below zero temperatures and snow and ice had me doubting I could physically get ready, ride all the way to Cleveland, park and walk in the frigid cold, be exposed to all that this kind of event necessitates and then make it back to the car and home. Dan offered to drive and drop us at the door and pick us up when it was over. This enabled our niece to come along. It was something rare and special for her and Danica to share together. As I settled in our seats I pulled Danica close and kissed her on the head. I broke down in tears. I was living. I was sharing something oh so good with my girl. No guilt. This was straight from the hand of my Father who delights in lavishing us with blessings. After reading the book the night before I felt free to revel in every detail of this experience.

Sunday morning I had brunch with three beautiful friends I rarely see at The Blue Door Cafe & Bakery in Cuyahoga Falls. I am a former foodie whose love of God’s imagination when it comes to the possibilities of what we can choose as nourishment runs deep. I’ve had this recommended spot on my two year “40 before forty” list for over a year. (I turn forty in November. I have serious living to do before then.) I ordered house made spaetzle sauteed with a medley of roasted Kumbocha squash, Brussels sprouts, leeks and button mushrooms with a cave aged Gruyere cream and a poached egg. Eating this meal was like worship. Not worship of the food but immense gratitude and praise for the people, the place, the ingredients and the chef’s creativity in combining them and cooking them.

Both the pageantry of the musical ice show and the brilliant combination of ingredients God made are examples of human beings reflecting the image of God. They both inspire me to praise and a more Godward heart. Robert Farrar Capon wrote in The Supper of The Lamb: A Culinary Reflection:

Why do we marry, why take friends and lovers? Why give ourselves to music, painting, chemistry or cooking? Out of simple delight in the resident goodness of creation, of course; but out of more than that, too. Half earth’s gorgeousness lies hidden in the glimpsed city it longs to become. For all its rooted loveliness, the world has no continuing city here; it is an outlandish place, a session in via to a better version of itself–and it is our glory to see it so and thirst until Jerusalem comes home at last. We are given appetites, not to consume the world and forget it, but to taste its goodness and hunger to make it great.

Both of these pleasures would not have been possible without my recent plasmapheresis. This is why I fight over and over again. This is why my emotional response to the enjoyment of seemingly normal things borders on embarrassing. This is why my family and I humble ourselves as receivers of good things from your hearts and hands in the midst of continued suffering and loss.

As Joe ends “The Things of Earth” he writes this:

To be a creature is to be a receiver . . . So embrace your creatureliness. Don’t seek to be God. Instead embrace the glorious limitations and boundaries that God has placed on you as a character in His story. May the Father of lights, who knows how to give good gifts to His children, teach you the secret of facing plenty and hunger, abundance and need, being brought low or being raised up. May He grant you the grace to do all things, receive all good things, lose all good things and endure all hard things through Christ who gives you strength.

Do you have guilt or spiritual angst when you receive good things from God? If you lose good things or experience suffering do you equate this with a change of your Heavenly Father’s heart toward you?

I am giving away a copy of Joe’s book. To enter please comment here on the blog with some thoughts about tasting and seeing good. In your comment mention where you shared. Each social media share is an extra entry. I will randomly choose a winner at midnight Friday, January 16th.

Jan 5
2015

I Will Follow. We Will Follow. A Dan Post

by Monica

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

Jan 1
2015

Laundering Wishes

by Monica

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

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

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

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

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

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

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

Bleached white wishes because of Jesus.

Dec 29
2014

The Right Instructions

by Monica

“You mustn’t wish for another life.
You mustn’t want to be somebody else.
What you must do is this:
‘Rejoice evermore.
Pray without ceasing.
In everything give thanks.’
I am not all the way capable of so much, but those are the right instructions.”
― Wendell Berry, Hannah Coulter

I’m falling into bed after my fifth plasmapheresis treatment. Today the dialysis floor was overflowing. They took me down to a room in an empty corridor in the ICU. I began to panic a little more than usual. One of my lines wasn’t connected correctly and blood escaped in bright red spatters. My veins and heart keenly felt the flow of life and plasma leaving and bags of albumin returning. I shivered under a pile of blankets. I was alone. My dad dropped me and Dan was coming to get me after work. I did not have my usual nurse. The woman today had only done this treatment one other time by herself. She was interested in learning, and it exhausted me to communicate even the most basic parts of my story in a way she could understand. Instead of shining the beauty of His saving and sustaining me day by day I was dim. All that telling made me wish I was somebody else. It made me wish for another life.

This is when hiding God’s Word in your heart counts the most. Lamentation 3:21-26 covered me.

Yet this I call to mind
and therefore I have hope:
Because of the Lord’s great love we are not consumed,
for his compassions never fail.
They are new every morning;
great is your faithfulness.
I say to myself, “The Lord is my portion;
therefore I will wait for him.”
The Lord is good to those whose hope is in him,
to the one who seeks him;
it is good to wait quietly
for the salvation of the Lord.

Rejoice now?

Pray no matter what?

Give thanks for this?

These are the right instructions.

I am incredibly grateful for those of you who carry me on my mat to Jesus in these times. Your love and encouragement make me braver. Your support means the world to my family and I. We have never felt alone.

Our Hope remains.

Dec 21
2014

When God Whispers

by Monica

“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

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.

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.

Searching for "One word"