Dear Mom. A Letter from Delaney

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

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

Laney Trees

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

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

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

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

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

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

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

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

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

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

It’s LOVE. Simple. True. Forever.

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

Dear Mom

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

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

Moms, read this again.

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

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

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

Photo by Grace Designs Photography

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Taste and See. And a giveaway

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“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.”

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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.

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Whiter Than Snow

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

Snow free

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

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

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

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

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

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

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

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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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One Word

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Monica Snyder One Word Large

“Commit your way to the Lord, Trust also in Him, and He shall bring it to pass.” Psalm 37:5

“Commit your work to the Lord, and your plans will be established.” Proverbs 16:3

For many years I have done away with resolutions and carefully chosen a word to represent my heart’s desires for the new year. I use this word by displaying it on a banner in my home. I wear a necklace with the word around my neck. I collage it on a big vision board I use as a desk mat for that year. I pray over it for 365 days and each month set an attainable goal to lean in to the spirit of the word.

Because of chronic illness and sudden setbacks including treatment and surgeries I cannot make plans like most of you do. Even when I try they are mostly thwarted and cause for disappointment. This leaves me in a day to day dependence on God I’ve come to recognize as gift even when it is painful to unwrap.

In the first weeks of January last year I sat across from my counselor in sadness. I had a shunt placed just months before to try to relieve the unbearable intracranial pressure that rendered me completely unable to get out of bed most days. It was the worst winter in decades. The bitter cold and constantly changing weather systems were crushing my body and brain. My counselor advised me to plan a trip away. Even though I couldn’t see how this would happen financially or physically I knew more than any kind of medical treatment I needed a reprieve. I needed a retreat. With my dear sister-in-law Amy on board with her Marriott rate and help from others close to me who knew I might not make it through the winter without this, I planned a trip to Tuscon, Arizona.

My word for 2014 was “PLAY”. This was my first attempt to lean in and claim something I had prayed would make real change in my mind, body and heart. The trip was planned. Then my shunt failed. A week before I was to fly to Arizona I was back in Maryland for surgery to have my shunt replaced. It snowed so heavily even the hospitals shut down, and my surgery was pushed while Janet and I holed up in a Courtyard in Gaithersburg. A week later I took a wheelchair ride to the gate at our local airport having determined not to let this trip slip away no matter what.

The time in Tuscon healed years of suffering. It was nothing short of a miracle. Not only did I become the most well I had been in years but almost every physical symptom vanished. Even with the fresh incision, a second cut in the same place to insert the shunt, I hiked in the Sonoran desert. I took long walks every day. I woke early to meditate. I had a lymph cleansing. I ate healthy food. I soaked in Vitamin D in the sunshine for hours each day. I sat on the patio each evening watching the stars appear. I didn’t need or want to sleep because I was PLAYING. When I did finally crawl into bed I didn’t need the fist full of pills to drug me into rest. I slept because I had LIVED.

While in Tuscon I revisited the call to write Gauntlet with a Gift. I took a suitcase of real books. I read five while I was there, none more profound than Bret Lott’s Letters and Life: On Being a Writer, On Being a Christian. I have read many books by writers on writing. Nothing comes close to this beautiful memoir of his approach to telling stories with the foundation of faith.

In the first chapter He tells of writing the above verse from Proverbs on a yellow sticky note before he wrote his first book.

“Commit your work to the Lord, and your plans will be established.” Proverbs 16:3

Twenty-one years later he still has it taped to wall above his desk. I kept reading it over and over. It planted a seed in me that would be choked and burnt in weeks after from more suffering but not destroyed. Two months after Tuscon I was back in Maryland for twelve days of hospitalization and treatment. It was during this time God brought a virtual friend who lived in Chicago to my room to tell me I had to obey God. I had to write this story. It was the care I needed for the seed to finally germinate and grow. I returned home and began writing in earnest.

The word “COMMIT” used in both Psalm 37:5 and Proverbs 16:3 is the Hebrew word “gol” from the root “galal” which means to “roll away” or “heap.” This means to trust or commit with the connotation of rolling away one’s trouble away from one’s self to someone who can help. As we commit (galal) our way to the Lord we are rolling away things that compose our daily lives to Him. When we trust in His love we “roll away” the burden of our lives to His care and our thoughts will be established. Only then can we freely enjoy the knowing God is directing our way (Psalm 37:23. Psalm 90:17, Proverbs 16:9)

This year I long to roll away the very real things that have held me back from finishing this book. I am giving every effort and every word to Him. I trust Him. I trust His providential call. I trust His provision to establish these plans and bring them to pass.

This year I “COMMIT.”

Do you have a word you want to claim for 2015? What do you want it to mean for your life in the coming weeks and months?

The image of my 2015 word was created by Traci Michele Little.

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Laundering Wishes

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“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

Wishesedited

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

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

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

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

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

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

Bleached white wishes because of Jesus.

Do come true

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The Right Instructions

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“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

Number 5

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.

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Today It’s Just Not So

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Justnotso

It is Christmas Eve morning. I’m sitting here in the glow of the tree lights with a TENS unit on my left arm and hand. A nurse hit my main nerve during a blood draw on Monday. I’ve had electrical shock pain every time I move my thumb since and my left arm is pretty much useless. I was back to the hospital before 7am this morning for more labs. The unit just called and wanted me to wait until 4:30pm for treatment. I broke down in sobs. They are going to try to get me in at 1pm. I will come home and fall into bed when it is finished.

In the past few weeks I’ve read post after post written by women on the subject of showing themselves grace when it comes to the crazy busy pressure of their family traditions, gift buying, gift wrapping, cookie making, parties, programs and their expectations of creating the overall look and feel of Christmas for their families.

I would give anything to be healthy enough to participate in this adrenaline fueled season. ANYTHING.

My Dan just finished vacuuming. He is emptying the dishwasher while he runs the first of several loads of clothes that need laundered. We have no food in our refrigerator. He will brave the grocery store for a few things today. Money is tight. He gets paid Friday. This is no different than any other Wednesday before pay day, but it is Christmas. The girls will go with him because my mom will be taking me to the hospital.

The girls Santa gifts, one each, are in a Rubbermaid high up in the garage. Dan will have to find time to hide away and wrap them with special paper. This is something I love to do. We usually have party food as a tradition on Christmas Eve. I make h’ordeuvres, crusty bread with brie and crab dip. Dan and I toast with a glass of wine. We open Christmas jammies. We sit snuggled around in the twinkle of our tree and light the last Advent candle while we read THE Christmas story. Danica is still a believer. She would write a letter to Santa and carefully put out his treats on a plate with a glass of milk and scatter carrots and reindeer food in the back yard. The girls go to bed early and don’t dare leave their rooms. It’s finally one more sleep. Dan and I wait until we know they are out and then bring the gifts from us and Santa out and stuff their stockings. We feel close. We know this season is a line break in our family story of loss and disappointment. We have tried to make it something meaningful and Christ focused and joyful no matter what.

This year is different. It seems even harder than 2011 when I was recovering from brain surgery and fusion and came home to my parent’s basement Christmas Eve for twenty-four hours with Dan and the girls. I was in such a fog I barely remember even being there. I remember my pain and short temper but knowing Delaney and Danica were mostly oblivious because so many people stepped in to surrogate that year. My dad played Santa and gifted us our dear Twixie. This made everything okay.

Dan is waiting for someone from Craigslist to come and buy his weights. They were his birthday present this year. Working out is his only hobby and the one thing that keeps him okay mentally. I don’t think it is a “Gift of the Magi” thing. He is just feeling the pressure. He’s thinking of a new year with my trip to Maryland on January 7th for a scan of my recent fusion and a visit with my neurosurgeon. He’s thinking of my canceled bone density scan and mammogram that will need to be done in January on a new deductible. He’s thinking of my cardiologist appointment in Toledo. He’s thinking of our first quarter trip to Cincinnati for Danica’s scans and visits when we still owe them from last year’s trip because it is always the beginning of her personal deductible. He’s thinking of how we floated a few bills to buy presents for the girls. He never thinks about himself.

I hurt for him most. He has loved past what someone should be asked. He has sacrificed every possible personal goal for a career or personal pleasure to be my husband and a father to our girls. Any moment he is not at work he is here serving us. Sunday he gently washed my hair over the sink, because I cannot shower. I looked straight into his eyes to understand how each assault on my body is one on his heart. We are one even though physical union is almost impossible in these times of illness and treatment. He has never once complained or made me feel an ounce of guilt about the long seasons of our life when the physical part of our marriage is completely unfulfilled. I ache. He aches. He would never walk away. When all the busy work is done, and a day is so hard we can barely breathe, he will curl up and sleep. He says sleep is the only place he isn’t hurting.

I appreciate all the notes of love reminding me that Satan is attacking my mind and heart with sadness. Thank you for pointing me to Jesus. It is not expectations about Christmas that cause my heartache or even the very real feelings of failing my husband and children when it comes to layering years of tradition as a foundation for their lives. Our walk is painful no matter what time of year.

I do not have amnesia. We do not have amnesia. God has provided for us every day. He has loved us through you over and over again as I have had treatments and surgeries. We are ever blessed in the midst of this never ending journey.

We are grateful for your love this season.

A friend brought cookie dough and decorating icing and sprinkles since I have not been well enough to bake. Dan and the girls did this together last weekend. She and her family also brought the girls a little money to shop for Dan and I and one another. Dan took them last Saturday, and it brought them great happiness. I’ve had many little meaningful gifts from friends reminding me to be strong and never give up. Family has sent gifts so there is an abundance of things for the girls to open under our tree. Everyone knows presents can’t fill the ache, but this is their way of saying they care. My dear Janet and her husband are cooking for us today so we will have a yummy dinner tonight. My parents have taken turns driving me in the early mornings for labs and afternoons for pheresis. This love reminds us we are not alone.

Right now is when I am supposed to circle around to something didactic about Jesus.
I should tell you I’m ever hoping and finding strength and grace minute by minute.

Today it’s just not so.

My God hasn’t changed a bit.
He is holding all this in His hands.
He wrote my days when there were none of them.
He is working all things together for my good, Dan’s good, Delaney’s good and Danica’s good.
He is working all this for His glory.
It is true even when I can’t feel it at all.

This is the gift we will keep unwrapping long after the last ornament is put away.
Day after day; week after week; month after month into 2015 we will wake and run to the foot of another tree. We will sit beneath Calvary and see “When (we) are in the presence of God, it seems profoundly unbecoming to demand anything.”–Francis Shaeffer

Merry Christmas dear ones.

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Star Song

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Dali

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

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

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

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

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

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

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

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

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

Light a candle tonight.

Take one step.

He is coming.

We have stars in our eyes.

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

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When God Whispers

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

New Image

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

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

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

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

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

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

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

Here’s the best part.

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

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

A gentle whisper.

Not in the wind.

Not in the earthquake.

Not in the fire.

A gentle whisper.

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

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

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

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

God’s glory.

Elijah’s greater good and ultimate joy.

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

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

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

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

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

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

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

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

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

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

pheresis

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

Smoke photography by Cindee Snider Re. Used with permission.

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