Archive of ‘Book Reviews’ category

Still Walking. A Team Danica-Monica Update

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At home
I still walk.
Doctors, looking
down at me, say
YOUR SPINE IS DISINTEGRATING,
STAY IN THE WHEELCHAIR OR ELSE.
Or else what? I’ll never walk again?
Never stand up? Of that
I am not afraid.
I am afraid
of sitting down
for the last time.

So,
I still walk at home.
Unlock the door,
wheel inside, then
up:
My remembered feet
on the cool slate,
My gaze straight into Gran’s painted eyes.
Someday, I will have to look up
to remember…
or take her down with me.

For now
I still walk at home.
Nothing fast, nothing fancy,
Nothing but one foot in front of the other,
Which is everything, really,
Everything if you appreciate
the shift of weight from heel
to toe, the way your arches
sigh into the carpet, and
the small dance that happens
when you just stand still.
–Lynn Goldfarb

I searched for a stock image of a younger person using a walker. One in a medical institution would have worked, but I really wanted one outdoors, maybe a young woman like me walking in the sun and leaves. There were hundreds of photos of older people with someone caring beside them helping them take each next step. There were no photos of a forty year old wife and mama gripping a metal support with wheels praying each step will take her closer to restoration.

In a way it’s sad I don’t write much during the several weeks between major surgeries and days like today when the fog begins to clear, and I’m able to process the pain and grief I’ve endured. I know I’ve lost wise things, and I’m sure I’ve buried others. This is how we survive any recurring trauma isn’t it?

Twenty-four. It’s a lot of anything. It’s a crazy amount of wounding.

I felt afraid. This terror was new and different. Fear is rarely part of these operations anymore. My pain becomes a place I’d rather die than keep living. I get a scan, see the new damage and mark the date on a calendar. I don’t ask myself how many patch jobs we can do before my spine disintegrates. This time as I woke from anesthesia I wondered if we’d gone too far. I had oxygen, but I couldn’t breathe. If I stayed awake I could make myself take breaths, but I was under the plastic bag of too many drugs. I just wanted to sleep. Every time I fell asleep I stopped breathing. An alarm would sound. I’d jerk awake. The nurse would remind me, “BREATHE.”

There was something about the way my body was positioned during this surgery that completely ruined my hips. The op notes are vague. I know part of the pain and inability to walk alone was from the bone marrow aspiration from my right hip. Once we moved to the hotel my sister and sister-in-law would help me to the bathroom. I felt my legs dragging behind me as I held onto the walker for dear life. There were burgundy stripes in the hotel floor, and they became like little mile markers for my marathon.

I’m grateful for hard fought battles won. I’m thankful for the scars, new and old alike. They are my beauty marks.

I won’t JUST sit in a chair.
Not even my “nest” chair.
I will put one foot in front of another.
Which is everything really.
It’s everything.

Presurg

Postsurg

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The Quiet Time. The Waiting Time. A Team Danica Update

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Waiting
YOU keep us waiting.
You, the God of all time,
Want us to wait
For the right time in which to discover
Who we are, where we are to go,
Who will be with us, and what we must do.
So thank you … for the waiting time.
–John Bell, quoted in The Westminster Collection of Christian Prayers

Friday marked 37 days since I pulled my car over and talked in detail with the Johns Hopkins neurosurgeon about Danica’s broken hardware and cervical instability. We picked a “tentative” surgery date of October 12th. I broke up with Cincinnati Children’s. And then it was quiet. We know all too well how difficult it is to get the OR for such a long period of time with all the right people scheduled, especially two head neurosurgeons who have different clinic and surgery days. Because the doctor is brand new to Hopkins he had to order special equipment, something in particular for Danica’s difficult operation, as well as the instrumentation for her new fusion. I guess it makes sense you don’t take a position at one of the best hospitals in the world and then waltz in and use whatever stuff they have. I keep saying something breezy like, “God’s got it on His calendar!” But we’ve been getting antsy, and I’m wanting to orchestrate the hundred things that can only be planned after we have a firm date. You can imagine my “beautiful mind” notebook, right?

My dear friend Kris Camealy has written a new Advent devotional titled Come Lord Jesus: The Weight of Waiting. I began reading an advanced copy the same week we made the decision about the surgeon and hospital for Danica’s surgery. Oh how I needed the disciplined walk through holy anticipation of God’s good plan of salvation through the birth of Jesus Christ. Every day of the Advent journey is deeply rooted in Scripture. I’ve gone back to read the passages again and again. I began to realize. God is not asking me to do nothing in the wait. He is asking me to prepare my heart and mind. He is asking me to humble myself and sit in hopeful and trusting expectation. He is asking me to believe He will work His purpose perfectly in the fullness of time…His time and not mine. If a day is like a thousand years and a thousand years is like a day then a month can definitely feel like two thousand years! He is asking me to believe He is there in the silence. (I will be posting about Come Lord Jesus again when it officially releases on October 16th and doing a giveaway!)

During another difficult waiting season in my life my friend Violet send me these words written by Oswald Chambers:

“God’s silences are His answers…Can God trust you…or are you still asking for a visible answer?…His silence is the sign that He is bringing you into a marvelous understanding of Himself…You will find that God has trusted you in the most intimate way possible, with an absolute silence, not of despair, but of pleasure…If God has given you a silence, praise Him, He is bringing you into the great run of His purposes.”

I already see the beautiful things He’s providing in this quiet time of waiting. With no firm surgery date I have been able to just be with Dan and my girls. I was able to celebrate Delaney’s fourteenth birthday doing “normal” mom things like taking her and her friends to try on formal dresses and out to eat. The first month of her freshman year of high school I was not just physically here but fully present. It has made all the difference. Just the simple stability of picking Delaney and Danica up from school every day has created calm in all of us. I was able to schedule new family pictures and actually follow through. I’ve mostly stayed off my computer and phone and snuggled, read books and had long talks with my Dani J. We celebrated Danica’s ninth birthday with her friends this weekend and will have cake and presents as a family tonight. There are barely traces of frantic Monica, because there was nothing I could do but WAIT and live real life in the quiet instead of holding my breath. This is Grace.

I canceled my Friday, October 7th scan and appointment in Charlottesville, Virginia with the vascular neurosurgeon who placed my VP shunt in April. The logistics of flying there are much more expensive and trying to navigate the several hours from there to DC without being able to rent a car and drive myself are just too difficult. My shunt is working beautifully, and I have continued to have complete relief from pressure headaches and symptoms. It rained buckets last week. I’ve been overwhelmed realizing what a true gift my surgery was. I never could have continued to fight for this relief without all of you praying and encouraging and donating. You didn’t give up. Thank you. We suffer gratitude. I will keep on thanking you because there is nothing else I know to do.

I am keeping a long standing appointment in Maryland with my neurosurgeon on Monday, October 10th. I am suffering increasing neck pain and symptoms. There is definitely spinal cord compression. If Danica’s surgery had remained on the 12th I would have needed to cancel my own scan and consult. I’ve wondered if I could even make it through being Danica’s advocate and caregiver during surgery, hospitalization and long recovery in the pain I’m in. Much like my emergency hysterectomy before her last big surgery I see God making a way for me to put on my own oxygen mask first. The plan is for me fly to DC this coming Sunday, the 9th. I will have my upright flexion and extension MRI and see my neurosurgeon on Monday and fly home that evening. I’m secretly praying if I need a one or two level fusion he would keep me and just do it even though I have no idea how my family would function here if that happened or how we would financially do it. I would be a much better mom to Danica in post op mode with more stability and less pain. Will you please pray specifically for this trip? I also have all day chemotherapy tomorrow. The new treatment plan is for me to have a full bag of Rituxin every six weeks indefinitely. Over the past week or so I have begun getting the blisters back on my hands and feet and my eye and legs have been twitching. These are always the first signs infection is ramping back up. Will you please pray this chemo will suppress the fires and be a long term answer, so I can completely avoid plasmapheresis? It is always healing, never being healed.

Before Danica’s big surgery six years ago Dan and I both read Tony Woodlief’s book Somewhere More Holy. (I can’t recommend this book enough.) I pulled it off the shelf to read again, and these words settled in my aching places:

“We have forgotten the God of small things, which is mostly what He has been with us because we ourselves are small, fragile things. We wait impatiently, sometimes hopelessly, for the burning-bush God, or the booming thunderclap God, forgetting that even a righteous man like Job covered before the whirlwind of God’s voice, that holy Moses could bear only a glimpse of God’s backside. We assume that we would hold up well against a visitation by the whirlwind God, and in our narcissistic longing we forget the God of the still, small voice, the suffering-servant God, the God who said of children that His kingdom consists of such as these. ‘Part of the inner world of everyone,’ writes Frederick Buechner, ‘is this sense of emptiness, unease, incompleteness, and I believe that this in itself is a word from God, that this is the sound that God’s voice makes in a world that has explained Him away. In such a world, I suspect that God maybe speaks to us most clearly through His silence, His absence, so that we know Him best through our missing Him.’”

I did finally get THE call from the Hopkins neurosurgeon late Friday afternoon. I met a friend for coffee yesterday, and I broke down for the first time. I realized I’ve been holding everything really close in the silence and the waiting. As sure as it was time to be quiet and still, I now need safe places to lament the hard that’s coming.

When I make the call to Baltimore today to officially reschedule everything will change. My body will leave my skin. My brain will leave my head. My heart will leave my chest. I will stop eating and sleeping well. Everything will become fast forward. Nothing will change about my God.

This morning my family left for school and work, and I sat remembering one of my favorite passages about waiting: “‘The Lord is my portion,’ says my soul, ‘Therefore I have hope in Him.’ The Lord is good to those who wait for Him, to the person who seeks Him. It is good that he waits silently for the salvation of the Lord.”–Lamentations 3:24-26 I prayed for strength to do each next thing and for complete surrender and dependence on my good God.

His Hope will not disappoint.
Our Hope remains.

This song from All Sons and Daughters album Poets and Saints is on repeat.

You’ll notice a few changes here on my site. I’ve added a specific place for Team Danica posts. If you subscribe at the top you will receive updates in your email. So many of you are asking about next steps and what we need. I don’t have specific answers for you. I plan to mail prayer cards to those of you who’ve faithfully prayed and supported us once we have the true surgery date.

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Pen to Paper. A Challenge. A Giveaway

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pentopaperwords
“One comfort that I relish is a letter from a close friend. The surprise of the letter in the day’s mail, the recognition of her handwriting on the envelope, the ritual of getting settled into my chair and reading and rereading her carefully chosen words.”–Deborah Chappell

pentopapergiveaway

I painted our ugly black metal mailbox white and used blue paint to stencil a flower and the numbers 309 on it. 309 Hoover Street in Staunton, Virginia was the first place I began to send and receive #pentopaper cards and letters. We left Ohio when I was five years old. My first grade teacher, Mrs Cobb, who would later be Delaney’s third grade teacher and is now Danica’s third grade teacher, became a pen pal when we moved away. I’d sit on the front porch swing waiting. The mail truck would stop at our house, and I would leap barefoot over the sprawling roots of the maple tree to check and see if there was a letter for me. Soon after I began collecting stamps. Every year for Christmas I would ask for the USPS Philatelic book containing every stamp released that year. A life long obsession with cards and stationary took hold as well, and I began collecting all kinds of paper. Most of all I began a love of slow, thoughtful back and forth conversations written by hand.

If you know me personally you have most likely received a #pentopaper from me. It’s been a priority most of my life, but when I became very sick I struggled with losing the ability to minister in any active way. I began setting aside a day a week to look through my address book, my facebook friends and church directory and mail cards and letters to touch base, encourage or celebrate people. I took the opportunity to pray specifically for each person I wrote. In a world where we primarily follow and respond to one another’s lives in seconds on social media or text messages if someone is very close to us, there is something incredibly intimate about receiving a letter touched by someone’s own hands, written in their unique style and penmanship, envelope licked by their tongue and carried to their own mailbox. They push the flag up as if to say, “Stop here! I have a piece of love to send today.” I’m fascinated with the logistics of the postal service. People complain about the price of stamps, but I still marvel for under fifty cents I can write you a letter, mail it from Ohio today, and you will receive it in California Thursday or Friday this week. I like to think of the journey it takes from here to there.

I have also been the recipient of hundreds of #pentopaper acts of kindness over the years. There are days a letter in my mailbox is the only contact I have with the world outside my home. The thoughts and prayers expressed in my own love language have literally rescued me. I don’t take one for granted. I cherish them all, and I hoard them. I don’t save much of anything I haven’t used in the past thirty days. My life is simple and lean, but when I die there will be my books and hat boxes, shoe boxes and Rubbermaid containers stuffed full of personal mail. The postmarks form the framework for my life’s timeline. Friends come and go. A few have stayed forever. Some people I don’t know at all, but they are praying for my family and I and supporting us. These cards and letters tell a story I love to read over and over again.

As part of my year of listening I have pulled back almost completely from responding on social media. I rarely text. When I feel myself wanting to type a few characters to express my sorrow or joy over something you’ve shared or just wanting to tell you I love you, and you are on my mind and heart, I STOP. I sit down next to my rolling cart full of paper, pens, stamps and stickers and my old fashioned address book, and I write something real and lasting and walk it down to my mailbox with a prayer. On every piece of mail I’ve sent I’ve written somewhere on the envelope the hashtag #pentopaper.

As a thank you to everyone who has taken the time to love me this way and as a challenge to those of you who aren’t really wired or disciplined to send #pentopaper much at all I am hosting a fun giveaway.

It includes the sweetest little set of jewelry with a tiny letter necklace and tiny letter earrings. I can hardly stand it they are so precious. There is also a set of “You’ve Got Mail” notecards with twenty USPS stamps and the book The Art of the Handwritten Note: A Guide to Reclaiming Civilized Communication by Margaret Shepherd.

To enter please comment here on the blog or on a social media post about a time you received #pentopaper that made all the difference. I will randomly choose a winner Monday morning, October 3rd. In the meantime think of someone who could use a note of encouragement, thanks or love and find time to write them and stick it in the mail. Don’t forget to use the hashtag #pentopaper. Let’s fill up one another’s mailboxes with kindness.

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Surgery Scheduled. Steady My Heart. A Team Danica Update

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Trust
“Then you’ll take delight in the Almighty; and will turn your face toward God. You’ll entreat Him and He’ll listen to you as you fulfill your vows. When you make a decision on something, it will be established for you, and light will brighten your way.”–Job 22:26-28

How many times have we fallen into a hotel bed in Cincinnati, Ohio? I should have been keeping a tally along the way. Our first trip was April, 2010. Danica was two and a half years old. We saw the crazy 3DCT confirming her atlas assimilation and how badly her first Chiari decompression failed her. The five months between the tragic news and her second decompression and difficult fusion were filled with second, third and fourth opinions. The surgeons threw their hat in the ring only to second guess themselves and the risk vs. benefit for our little girl and their own surgical careers. There was so little information about a case like hers. We were praying like crazy but moving forward in fits and starts. Many of you read our story as I pecked it out on our little Team Danica blogger site. You were witness to the wrestling of faith and fear. You saw the strain in our marriage and family. You saw me breaking physically and mentally as I fought for the best chance at the best life for my girl.

I’ve been reading for an online Bible study I’m doing from Suzanne Eller’s book Come With Me: Discovering the Beauty of Where He Leads. I’m seeing myself in the humanity of the disciples as we dig deeper. These men saw crazy impossible miracles and days later questioned the economics of a few loaves and fishes and thousands of people. God gave us a miracle. As time passed I thought God was punctuating Danica’s suffering so we could move on to my own bitter fight. The disciples were always forgetting, weren’t they? I don’t want to forget our first miracle. Suzie writes about her husband’s cancer diagnosis years after her own fight with breast cancer. “We beat the odds, and that was a gift. For a long time I thought that was the big miracle, but later I realized the true miracles came as we dug deep into our faith and came up with enough to make it through the day–or the hour if that was what was required.” Whether it’s been six days or six years you’d think I would forever remember the kind of healing and scandalous provision God made for us, but sometimes I don’t. There were moments leading up to our Cincinnati trip I was too blinded by what was unfolding again to turn back and SEE. My heart is fused forward, like my literal neck. Forward. Do the next thing. Do the next thing you think you cannot do. In the past few weeks I’ve been reaching through our story to remember. It aches in the deepest place. You’ve been asking. You’ve been praying. If I write it. If I say it. It’s more true. So I haven’t.

“God, I don’t think we can do this.”

Danica needs another complicated surgery. Her beautiful hardware is broken along with at least one level of fusion. She also has a piece of shunt tubing left near her brain stem. It’s dangerous and needs removed. I could write a neurosurgical and cervical spine treatise here, but it would confuse most of you. We went to Cincinnati with trepidation. After our scans and appointments in late July her case was escalated to new surgeons. We had no idea what our meeting there would look like. I approached it as an information gathering session. The surgeons were humble and kind. They patiently let me ask every detailed question. Dan and Danica mostly listened but felt comfortable in raising their own less clinical concerns. We walked away with an ambiguous scope of surgery and some warning flags. We returned home dealing with Danica’s escalating anxiety about the hows and whens of surgery. “Mom, I just want to know what’s going to happen and MOVE ON.”

While waiting for an important opinion from a surgeon at Johns Hopkins we prayed for guidance. I begged God to make the crooked path straight and help us know for sure where we needed to be. He answered. Last week I got the second call from the Johns Hopkins surgeon after he reviewed every single bit of Danica’s history, prior op notes and her imaging. All the concerns were addressed before I could even raise them. A light shone bright. There are still many details to work out, but her tentative surgery date is Wednesday, October 12th, in Baltimore. She needs an invasive myelogram to see exactly how to approach the drain tubing in such a precarious place. We will have several days of pre-op there before surgery. She will be hospitalized a week or so after surgery. Depending on how she is healing we may need to stay in the area for awhile after discharge. And she will have to wear a brace. There’s no posturing. This is a hard surgery. The brain part. The hardware removal. The new fusion including taking some of Danica’s own rib to make fusion slurry for her neck. This is harder than the prior one, but it must be done and soon and in a new city and at a new hospital.

I’ve been pushing myself to get the girls settled into their new school year. I’ve been trying to spend heart to heart time with my Laney. I finished my last big round of chemo last Tuesday. I will have a Rituxin treatment every six weeks moving forward. My C4-5 is cachunking every time I move my neck. My appointments planned with Dr. Liu at UVA for shunt post op and my scans and appointment in Chevy Chase with Dr. Henderson are the Friday and Monday before Danica’s planned surgery. I know in my heart I won’t be able to make them, but I refuse to cancel them. I need them. I can’t figure out the logistics, but I hate to be so close and not follow through. I’ve been on the phone for hours every day with hospitals, billing departments and our insurance company. It’s soul sapping work. The Virginia hospital where I had my VP shunt placed in April sent my account to judicial affairs. They are suing us. In all our crushing medical debt this is only the second time a hospital has gone to this measure to get a judgment to pursue a levy of Dan’s wages. I’m trying to understand the amount. My insurance company is helping. If I agree to make any payments then I’m accepting the amount which we think is wrong. I’ve focused on paying Danica’s bills this year to prepare for possible surgery at the hospital in Cincinnati. (The money you’ve donated has made the way for us to take those trips and pay most of those bills. Thank you. Thank you. Can you feel our hearts? Thank you.) I try to keep the stress from Dan while quietly informing him. He is working so hard. We can only do what we can do. He can’t become paralyzed by the weight. I try to carry it. I’ve hit a wall. My left eye is twitching. My jaw hurts from clenching and grinding. I ache all over. I’m out of cortisol. The adrenaline is spent.

“God, I don’t think I can do this.”

I’ve felt the needle in my spinal cord. The cut in my back to take a rib. The slicing of the back of my head and neck for a third time. The spasms from damaged nerves and cut muscles. It hurts like hell. To look in my Danica’s eyes knowing that agony is suffering multiplied.

A week ago Danica and I were driving to Paper Allure, a sweet #pentopaper shop I love, to pick up a birthday gift for a friend when the call from the Hopkin’s surgeon came. I pulled over in a parking lot, put him on speaker and jotted notes. Danica heard the entire thing including new, more scary parts of her surgery. She was quiet the few blocks from where we stopped to our destination. At the store she saw a display of bracelets hung by clothespins with one word on them. They are made of swarovski crystals and were a little pricey. She asked if she could have one. I reminded her that she had a birthday soon and maybe it would be special to get one to wear for her surgery. The young lady helping me overheard us. She went in the back room to wrap my gift, and the owner of the shop told her she could let Danica pick one. Kindness changes everything. Danica’s eyes lit up and out of all the possible words like hope and courage and believe she picked trust. The bracelet is from a beautiful project called Little Words. It has a little gold tag with a number you register online with your own story. You wear the bracelet as long as you need the word. When you meet someone who needs the word more than you it’s time to pass it on. They log on and continue the narrative of the life of the bracelet and the one word. In the car on the way home I asked her why she picked the word she did. With the simple faith of a child she said, “Because I TRUST God.” She’s asked for me to read her old entries on Team Danica. She wants me to tell her about the Gauntlet. She still believes in the gift. Oh, God, I can’t see it, but she can. As I tucked her in bed that night she asked to see ALL my scars. She said “If you can go through that many surgeries and be okay, I’ll be okay.” This weekend we worked on making a folder of photos and short video clips from her journey. I’m wanting to make a multimedia slideshow with a new fight song. I played a few I was considering on YouTube for her. She ran to her room and grabbed the first edition ipad with the shattered screen, the one someone bought her six years ago while she was in her wheelchair, and said, “This is the song we should use.” It was Kari Jobe’s “Steady My Heart.” It’s a song on her own playlist she listens to over and over again. I cried as we listened to the meaningful lyrics.

She believes.

He’s here.
He’s real.
We can trust Him.
Even when it hurts. Even when it’s hard. Even when it all just falls apart.
We can run to Him.
He is lover of our hearts.
He is healer of our scars.
We find refuge in His arms.

My Danica Jean is taking the lead. She’s grabbed my hand. She’s reminding me to lean hard. She’s showing me how to trust again.

“God, we can do this.
Through Your strength.
By Your Grace.
We can do this.
Please, steady our hearts.”

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Cliché Cringe. Celebrating Soul Bare. And a Giveaway

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#SoulBare
“Inauthenticity, hiding and pretending to be someone we are not, leads to shame. Refusing to be vulnerable for the sake of preserving pride and self-image destroys the possibility of living in Jesus’ freedom and joy and hope.”Jennifer J. Camp

I hate bandwagons. I can love something like crazy, but if too many people start to love it too I become suspect. The road less traveled, the narrow gate, the eye of a needle…these are the things I want to be part of. I’m a fan of precise words, and I hate the cliché, especially Christian ones. Here are a few I’ve tried to weed out of my vocabulary in the past few years,

Authentic
Transparent
Vulnerable

I used to appreciate them, but then everyone, and I mean EVERYONE, started saying they were suddenly telling the whole truth about everything. And I cringed. They became fingernails on a chalkboard. I would hear them or read them, and I’d get a mini barf in the back of my throat.

I wrote Gauntlet with a Gift out of context…without the memoir that came before. And then the doubts came. Why would you believe all this suffering was a gift of scandalous love and Grace if you didn’t know what I was rescued and redeemed from? I didn’t tell you about the child who found Jesus and then lost Him. I didn’t tell you about the ugly, abusive church that keeps me from going to this day. I didn’t tell you about how being a victim of violence triggered the sudden onset of a prodigal life or how I became a self made orphan, a drunk, a slut and then a prostitute, a thief, a murderer, and an adulteress. All of you reading my old blog day after day and following our hard on social media saw me stumbling in faith but always finding my way back to Dayenu. Even this was enough. It was more than enough. It was more than I deserved. I was daring to call it good as long as He was getting the glory. None of this makes any sense unless you know the before. So I saved Gauntlet away. I took the Scrivener short cut off my desktop, and I claimed “Listen” for this year. I’ve written almost nothing. I’m less true. I’m more covered. I’m more guarded. I fear the cliché. I’m terrified of the overshare.

Part of the listening has become a Spirit led passion to read well and support other writers who are brave truth tellers. Mostly offline. Slowly God has allowed me to form authentic relationship with these transparent and vulnerable Jesus people. I am realizing their stories are layers of sin and suffering saved by Grace and faith just like mine. Sometimes their middles need told before the beginnings. Sometimes they stand alone. There are no hard, fast rules to this messy business. I’m also understanding as much as our narratives have similar chords they are also uniquely ours and, yes, each and every one has the power to help and heal, sometimes others and most of all ourselves.

A beautiful anthology of short authentic, transparent, vulnerable stories from friends I know and friends I’d like to know were born through a midwife, Cara Sexton. The book is Soul Bare. Some of the writers I’ve had the great privilege of meeting face to face. I’ve shared meals and worship and sacrament with them in sacred space. Some of the stories are from writers I’ve never heard of. They don’t have book deals or speaking obligations. They have small online places where they shed pretense and practice real. As blogging fades into podcasts and live video streaming, there are still plenty of us who wish we could stay in 2007 with our one hundred faithful readers (was “following” even a thing then?) and just lay it down day after day in words. If you miss that kind of intimacy, you will love this book.

Cara ends with this beautiful description of “what it means to be soul bare…”

…This is what it means to seek God with all our heart and mind and soul. It does not mean, as anyone who has ever lingered in Christian subculture may suspect, that we have reached a pinnacle of faith–that we have simply believed hard enough.

It is to be lost and found, over and over again. It is to recognize the upside-down nature of the things of this world. It is to know that even when we are lost, we have a finding place. It is to know the word ‘help.’

Even when we have no words, even when we have only blindness and cannot take ourselves to the Word made flesh, He comes anyhow, somehow…He comes, and against all odds, we see.

Cara isn’t one of the writers I knew. Just before this book was published one of the other writers included in the book, a mutual friend, connected us for an entirely different reason than words. Cara has been a chronic illness warrior for years with muddied diagnoses. They just found her Chiari malformation. Oh how I wish I had a printed copy of Gauntlet to mail her. Maybe, just maybe, Danica and I’s story matters just as it is.

I’m celebrating Soul Bare with a giveaway!
Here’s how to enter:

1. Share this post on social media to give your friends a chance to win this amazing book.
2. Please leave a comment here about what being authentic, vulnerable and transparent means to you.
3. Please say a prayer for my new friend Cara.

A winner will be randomly chosen from all the entries on Monday night, August 15th, and announced Tuesday morning from my chemo chair.

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Happiness. Even Here? Taking the Dare. And a Giveaway

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TheHDare
“There’s happiness right where we are. God is daring us to stalk it. Sometimes it shows up small. But it’s important that we look, because some days the looking will save us.”—Jennifer Dukes Lee, The Happiness Dare

It’s early morning. I’m sitting at the cancer center receiving three bags of IV medicine that prepare my body for the chemotherapy to follow. Steroids, Phenergan and Benadryl along with a hefty dose of oral Tylenol pave the way for a long infusion of Rituxin. This is the first of four infusions, one a week for the next four weeks. I’ve just come through another grueling round of five plamapheresis treatments. Every time we say I can’t do it again. The access to my main ventricle is more and more dangerous. We had to go in the left side through my jugular and tuck the catheter under my clavicle and cross my heart under the skin to get it placed this time. It was even more painful than usual. The consensus between all my doctors is the Rituxin worked at suppressing the autoimmune attacks for a longer period than ever before. After this aggressive month long push I will continue to receive chemo infusions every six weeks indefinitely. I feel hopeful about the new plan.

Most cancer center infusion rooms are similar. This one has over thirty recliners lined up in rows. There is a fireplace and a large TV. When you come in early, like I do, you get to pick your spot first. Slowly the room begins to fill with patients in various stages of cancer. This particular oncologist is known as a cowboy. He does research trials on drugs in various stages of approval. Most of these patients have been told there is nothing else available in their fight, and they come here. This huge room is scattered with people, young and old, who are committed to fighting and holding on. Many of them say their lives have been prolonged years because of their chemo and care here. Still, it is not a “happy” place.

My friend Jennifer Dukes Lee gave birth to a new book today. She named it The Happiness Dare. I love Jennifer’s writing, both her last book Love Idol and her blog. Still, I have to admit I’m just not in a place to play the glad game. When her book showed up on my doorstep the week before last, I resisted the cheerful blue cover with the yellow candy font. The last thing I wanted to be challenged about was happiness. Really? How could I find happiness in all this never ending hard?

Over the last ten years of unrelenting trial in our family’s life, I’ve wrestled with God’s asking me to “Count it all joy.” Joy is a fruit of the Spirit. I understand the suffering of this short life cannot be compared to the eternal glory waiting. This is my ultimate hope. I’m not sure I’ve ever fully believed happiness is something God wants for me. The Happiness Dare blows this wide open, and it begins with Jesus.

“Jesus’ most famous sermon happened in the region of Galilee on a mount. Envision the crowds gathering to hear what the Nazarene has to say. Find a patch of grass or a comfortable rock on the hillside and listen as Jesus begins to speak.

The first word out of His mouth is not holy. It is not joyful. It is happy.

“Happy are those who…”

The word for happy in the Scriptures is Greek makarios. Some translations use the English word blessed whenever makarious appears in the New Testament, But other translators—keenly away that makarios comes from the word makar (which means happy or blessed)—translate the word to happiness instead.

It’s on that mount Jesus opens a profoundly important door into the happiness we can have in Him.”

Jennifer goes on to address the rub in the Christian tradition between joy and happiness. Mix in holy, and the waters are even muddier.

Happiness isn’t the opposite of holy. It’s part of what makes you holy.

Happiness isn’t the opposite of joy. It’s a part of Chris-inspired joy, expressed within you.

Happiness isn’t selfish, or stupid, or wrong or ridiculous.
When we seek it, we are more, not less, like Jesus.

Our happiness is hemmed directly into the heart of joy. How many truly joyful people do you know who are pinched-faced Christians? If you have to dig a mile deep to find a person’s smile, is that really joy? Or has the misery disguised itself as deep Christian joy?”

Does joy in Jesus abide and happiness come and go with our circumstances? I’m ever grateful Jennifer began her book with the theology behind her dare to be happy. I had to read chapter two several times before I could move on. I realized along with her I have never bothered to ask God for happiness. Ever.

“Maybe I had never asked because I didn’t think I deserved happiness. Maybe I’d heard too many sermons telling me that I’d be far better off aiming for the more durable virtue of joy. If I prayed for happiness, I feared I might sound like a woman who believed in a prosperity gospel, which promises happiness through prosperity and success. But I didn’t believe that kind of gospel at all. I didn’t want happiness at the expense of holiness. I wanted happiness as a part of being a human created to glorify God and enjoy Him forever.”

I exhaled. I got down on my knees, and I dared to ask God to make me happy. Happy here in this chair with chemo slowly dripping, even knowing how utterly sick I will feel tonight and tomorrow. Happy understanding this road is one of healing but always fighting and never fully healed here on earth. Happy learning an unimaginable new surgery is needed for my Danica. Happy opening the mailbox to find the crushing medical bills I know I can’t pay. Happy watching my Delaney and my Dan experience all this as if it was happening to them. I’m seeking and asking for enduring happiness. Will you take the dare with me?

“Takers of the Happiness Dare learn that God not only cares about our happiness, He encourages us to go after it. The Happiness Dare is a challenge to enter into a holy pursuit of happiness, to boycott cynicism, to wring delight out of our ordinary days, and to hunt for happiness even when it’s hard to see…Dare to believe that our happiness actually matters to God.”

Friends, this book is good. Jennifer takes you through finding happiness in earthly pleasure through the good gifts of God. She encourages you to taste heavenly joy even now in His kingdom on earth. She lovingly takes your heart and hand to explore your unique happiness wiring or happiness personality style. (Not a big surprise mine is The Giver) She ends her book specifically addressing happiness in times of pain, loss and grief and our ultimate desire for eternal happiness in heaven. Without these chapters punctuating her dare I still might have felt this book didn’t apply to me. But it does. It is for you too!

“Let’s do this. Let’s frighten the critics and baffle the cynics.
Be like Jesus.
Take the dare.”

“I have told you this to make you completely happy as I am.”—John 15:11 CEV

Gifts are a crazy loud love language (and now I know a happiness personality) of mine. I’m so excited to invite you to join me in celebrating the launch of Jennifer’s book with a giveaway! The winner will a copy of The Happiness Dare

Here’s how to enter:
1. Share this post on social media to give your friends a chance to win this amazing book.
2. Please leave a comment here about a big or small way you’ve found happiness by really seeking it out.
3. Totally optional but highly recommended is to head over to Jennifer’s place and subscribe to her blog Jennifer Dukes Lee. SIGN UP TO TAKE THE DARE and read her post today with all kinds of fun giveaways. I had the honor of meeting Jennifer at The High Calling retreat in November, 2014 and have been truly blessed by her writing and her friendship.

A winner will be randomly chosen from all the entries on Sunday night, August 7th, and announced Monday morning!

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When I Simply Cannot Pray. Help

by

hospital

Some mornings she simply cannot
bring herself to pray. Even so, a prayer
will at times break through her clenched lips,
announcing the slow drain at her heart.
She will raise her face from its cage of fingers
and gape at the fog that has lain itself down
over the field behind her house like
a dream of erasure. Even the green trees have
lost color. No air breathes. Not a wing of sound
flies back from the highway behind the hill.

And then some midnight, when faith
has quite emptied itself, a familiar loneliness
makes itself at home under her ribs.
A ghost of God? An inkling? She holds
her breath, listens as a small draught
weathers its way through the eaves,
into her ears. The next moment she hears her child
stir in the room down the hall, calling
her name, as if (s)he names her longing and in
that naming, names a kind of answer.
–Luci Shaw, The Angles of Light

I texted a friend last night. “I’m losing my religion.” Yes, full blown, Michael Stipe singing in the background, losing it.

“Oh no, I’ve said too much.”

It was day three of a new round of plamapheresis slowly emptying the flaring infections attacking every part of my body and brain. It is always grueling. I arrive early to have labs drawn. It takes a few hours for the numbers to come back. Twice, last Thursday and today, my treatments have been cancelled because my fibrinogen is too low. The hospital where I receive treatments is in a major shift in their dialysis unit. It’s left them with only two nurses who know how to run the machine I need. My usual nurse leaves tomorrow for a long vacation and the other nurse is off all this week. We were trying to cram five treatments that should be given every other day into less than a week, and my body appropriately screamed “No way!”

As Dan was driving me back to the hospital yesterday I was on the phone with Cincinnati Children’s confirming what scans Danica will be having next Tuesday. Realizing my last pheresis will be Monday, the day before we take this oh so hard trip, I was already unhinged. The head ortho nurse looked back in the spine conference notes and said it indicated a CT angiogram that had not been ordered. Trying to get this scheduled at the last minute is nearly impossible even at the main campus much less at the Liberty location where our other scans and appointment is. She said she would work on it and call me Thursday. Yes, this is how things happen in health care. There is clinic and surgeries and other people’s children in the balance. I learned long ago how to walk the delicate line of being a strong advocate and also a compassionate patient. When my daughter is in the exam room or on the OR table I want others to respect and care for us too.

When Dan picked me up several hours later I was ashen, freezing cold in 80 degree heat, crazy nauseous and tired and never more aware of how hard all this is. Anne Lamott writes in her treasure of a book, Help, Thanks, Wow: The Three Essential Prayers, “If I were going to begin practicing the presence of God for the first time today, it would help to begin admitting the three most terrible truths of our existence: that we are so ruined, and so loved, and in charge of so little.” Yes. This.

I am ruined. My body failing me over and over again in countless ways is the ultimate betrayal. It’s never been about believing God can heal me. It’s surrendering to the fact it will not fully happen in this life. There are some victories. The fight is not in vain, but I have to put out a white flag on this complete healing thing. In eternity, yes. Here, no.

I am loved. So loved. My friend who takes me to treatment and comes to get me whenever she can is love. I don’t call her. She calls me. She knows the asking is my Achilles heel. Her calling her son-in-law to help when she can’t is love. Him coming on his precious day off is love. The same friend’s husband buying our favorite Stouffer’s frozen enchiladas while he’s shopping is love. The expression on his face when he sees me and the wisdom in his words, “There’s nothing I can say,” is love. Another friend showing up with an unplanned meal on a day our family was near implosion is love. Tuna casserole can in fact be manna. A package in the mail with epsom salts, unscented lotion and herbal tea and #pentopaper encouragement is love. A friend showing up with food, pet meds and a check from a lemonade stand her sweet girls had to help with Danica’s trip is love. All your donations on our gofundme site are scandalous love. Your prayers, especially when I just cannot pray for myself, are love.

I am in charge of so little. Really, nothing. I can’t orchestrate the rest of this treatment and plan rides to and from even if I asked for help. I can’t predict exactly how our Cincinnati trip will go. Both outcomes of these scans and appointments are worse case scenarios. I can’t tell Danica it’s all going to be okay and soon she will be able to run and play. I can’t ease her very real fears about the future of this broken metal in her neck that once gave her a miracle. I can’t keep my Laney safe while we are away or heal any of the scars leaving her over and over again all these years have left on her heart and mine. I can’t pay our bills. I can’t stop the constant swirling spreadsheet of debt from cutting off my air supply and sending my body into a stress induced panic every time the phone rings or the mail truck pulls away. I can’t go back to work to try to fix all this. I want to work so badly. I want the prideful, self sufficient feeling of doing anything to make this less of a mess, but I can’t. I can’t give my husband the one thing he wants more than anything in the world–his Moni Kaye back. Worst of all, I simply cannot pray.

After my family was in bed last night I slipped into the pitch black sun room, laid on the cold floor and called the friend I texted earlier. She is always my place to tell the whole truth. I cried. I shook my fists. I told her how mad I am. I told her how I really want to give up. In the same breath I had to talk about the love. I couldn’t not mention the love. Something happened. In Anne’s same book she calls it a “divine limpness.” I was saying all the things to my friend I wanted to get on my knees at my prayer bench and say to my God.

“…In that divine limpness you’ll be able to breathe again. Then you’re halfway home. In many cases breath is all you need. Breath is holy spirit. Breath is Life. It’s oxygen. Breath might get you a little rest. You must be so exhausted…

Through prayer, we take ourselves off the hook and put God on the hook, where God belongs. When you’re on the hook, you’re thrashing, helpless, furious, like a smaller kid lifted by the seat of his pants by a mean big kid. Jesus, on the literal hook of the cross, says to God, ‘Help,’ and God enters into every second of the Passion like a labor nurse.

When you get your hooks out of something, it can roll away, down its own hill, away from you. It can breathe again. It got away from you, and your tight sweaty grip, and your stagnant dog breath, the torture of watching you do somersaults and listening to you whine ‘What if?’ and ‘Wait, wait, I have ONE more idea…’

You can go from monkey island, with endless chatter, umbrage, and poop-throwing, to what is happening in front of me. God, what a concept. It means I stop trying to figure it out, because trying to figure it out is exhausting and crazy-making. Doping it has become the problem.

So when we cry out ‘help’, or whisper it into our chests, we enter the paradox of not going limp and not feeling that we can barely walk, and we release ourselves from the absolute craziness of trying to be our own–or other people’s–higher powers.

Help.

We can be freed from a damaging insistence on forward thrust, from a commitment to running wildly down a convenient path that might actually be taking us deeper into the dark forest. Praying ‘help’ means that we ask that something give us the courage to stop us in our tracks, right where we are, and turn our fixation away from the Gordian knot of our problems. We stop the toxic peering and instead turn our eyes to something else; to our feet on the sidewalk; to the middle distance; to the hills, whence our help comes. Something else. Anything else. Maybe this is a shift of only eight degrees, but it can be a miracle.

It may be one of those miracles when your heart sinks, because you think it means you have lost. But in surrender, you have won. And if it were me, after a moment, I would say, ‘Thanks.'”

I hung up the phone, wiped my eyes and blew my nose. I peeked into my girl’s rooms on my way to bed. I remembered my Danica’s prayer, the one I was almost too jaded to hear, “Dear Jesus, Thank you for this day. HELP mommy to get her treatments and to get better. THANK YOU for my friend’s lemonade stand to raise money so I can see my doctors in Cincinnati. THANK YOU for my stuffed peas in a pod. (A gift from her friend she held tightly as she prayed.) Help grandpa and grandma to get home safely. HELP Anna Mae at her new home. THANK YOU for Jesus who died on the cross for our sins. HELP us be more like Him. Amen.” (This is a variation of her same bedtime prayer every night.) Her childlike faith and Sleep Sound in Jesus lullabies tucked her heart and mind safely in when I could not.

I crawled into my own bed, put my earbuds in and listened to R.E.M.’s old song “Losing My Religion.” I was transported back to the summer I saw them in concert at the Gund Arena. I was so far from God but wanting Him and needing Him so badly it ached. I held up my lighter during “Everybody Hurts” as tears ran down my face. Even then I know He heard my “Help.”

This morning Dan and I left our house at 6:30 am so he could drop me at the hospital for labs before he headed to work. A few miles down the highway I felt utterly sick, and we took an exit so I could run into a McDonalds and empty my stomach of the curdled worry and grief I’d ingested the night before. After the needle and the many tubes of blood I waited for hours to get the results. The director of dialysis found me in the sixth floor waiting room. She felt so badly about their staffing issues pushing me to come on days I clearly was not going to be able to proceed. She told me she called the nurse who was on vacation locally. Her daughter had a baby, and she took the week off to help her. She would come in Thursday to get another treatment in. I cried. More love. More thanks. I called my sister, Alecia, who has managed more nonsense in the past week than any one person should have to. I said, “I’m sorry. I need HELP. Can you come get me?” She rallied her girls, got them dressed and drove the twenty minutes to pick me up. I sat in the light filled atrium waiting. I turned my face towards the bright sun, and the Spirit groaned for me what I could not utter and then I said,

“Thank you.”

Amen.

“In the same way, the Spirit helps us in our weakness. We do not know what we ought to pray for, but the Spirit himself intercedes for us through wordless groans.”–Romans 8:26

atrium

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Letting the Light Be

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“If I did not like the way the light looked at a given moment, I knew it would change. If I loved the way the light looked at a given moment, I knew it would change. I could not speed it up, and I could not slow it down…the light was my life…Paying attention to it, I lost my will to control it. Watching it, I became patient. Letting it be, I became well.”–Barbara Taylor Brown, An Altar In The World

Light

I’m sitting at the Raleigh-Durham airport. Our flight should have been in the sky in time to see the sun setting from the windows. Instead we are on a several hour delay. I have traveled alone the majority of my life. I’ve flown many times for work, pleasure and health appointments. I have rarely minded settling in to people watch, read and write and listen to a favorite playlist. When I don’t have to manage other people’s emotions I can handle most anything and even find some kind of enjoyment in it. With Dan and the girls along I become acutely aware of their fatigue, their frustrations associated with boredom and waiting and their hunger and thirst. Tonight I sit with a bottle of Purell and a package of wipes. I’m anxious for them and with them. I take a Valium for my neck in spasm from carrying my bag and sitting so long in a strained position, and I pray. “God, don’t let this long day and night become an ugly ending punctuation on such a beautiful trip. Help us be kind. Help us be patient. Take us home safely. Amen.”

We’ve been in North Carolina on the shores of the Atlantic for a week now. It wasn’t a secret. It was a last minute, quiet gift from dear friends who know more than most what we’ve been through and what we are facing. It was perfect timing. The Tuesday to Tuesday slid between two tropical storm systems. We had beautiful sunny days. Every moment was Grace. Grace by definition is “undeserved merit.” People look at our hard and often say when we get a small break, “No one deserves it more than you guys do.” We don’t operate from this place.

This trip still pinches. The “cheap” flights come with baggage fees. The kennel for Twixie, the airport parking and inevitable eating out despite our many peanut butter and jelly sandwiches strain our “impossible” budget. I tried not to speak in terms of “not enough” to Dan and the girls. I live in the truth of DAYENU. Enough. This entire trip is MORE THAN ENOUGH. This is reality for me. I literally don’t take a single breath for granted. I want my family to understand this as fully as I feel it, but I’m not sure anyone can unless they’ve sat in the painful void as long as I have.

Dayenu

A little gnawing voice has whispered we shouldn’t be here at all. People donated so much money so I could go to UVA and have my latest surgery. I constantly run my fingers over the map of the winding skull incision where prickly new hair tries to grow. I feel the raised bump of my shunt and follow the tubing down the side of my head and behind my ear. I remember. This is why you’ve loved us over and over. This is what you prayed for. You’ve wanted a pain free day in the light for my family and I. God answered with a week of them.

There’s an email in my inbox from Danica’s retired orthopedic surgeon’s assistant. We are trying to schedule Danica’s new appointment in Cincinnati so we are able to see him after her scans and consult with the current head of orthopedic’s at Children’s. It’s never easy coordinating. Dan and I cannot wrap our heads around another trip with long drives on roads that hold so much dread. We can’t think about hotels, bad food, waiting and more waiting and most of all our Danica Jean’s eyes trying to be brave but spilling tears of fear about the unknown. I tried to stay in the HERE and NOW all week but sitting here tonight watching Danica hold her little neck in her hands with the pained look I know all too well I am scared of what comes next.

The light is ever changing. I’m always chasing it. I’ve come to know treasures in darkness. I thought I could write and publish a book about the gifts found in ugly packages. The more I read over my own words the more hollow they seemed. I didn’t delete them, but I hid them away. The same friend who gave us this trip asked me to pull “Gauntlet” back out and read it again. She challenged me to reconsider what I poured from my heart there…maybe not as it is written but at the very core. My vision has matured. What was myopic about Danica’s miracle and my own journey has new layers now. I was trying to write an ending that hasn’t happened yet. I was trying to speed up what could only be seen by slowing down.

I am watching.
I am paying attention.
I’m letting things be.
I’m becoming well.

“And I will give you treasures hidden in the darkness–secret riches. I will do this so you may know that I am the LORD, the God of Israel, the one who calls you by name.”–Isaiah 45:3

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Changing Light

by

“If you live in the dark a long time and the sun comes out, you do not cross into it whistling. There’s an initial uprush of relief at first, then-for me, anyway- a profound dislocation. My old assumptions about how the world works are buried, yet my new ones aren’t yet operational. There’s been a death of sorts, but without a few days in hell, no resurrection is possible.” ― Mary Karr, Lit
Changing Light

The last time I wrote here I felt like I was dying. I wanted to die. My intracranial pressure ushered me into one of the darkest times of my entire life. The unrelenting pain felt as close to hell as possible without total separation from God. Without the “inch of daylight underneath my door” I might not be here.

I knew my third lumbar shunt had failed. In addition to the mind blowing headache I had a knife like pain where the shunt was placed under my ribs on the right side. My face carried the expression of someone being stabbed over and over again. I don’t remember smiling for months. I don’t remember laughing. When I passed by a mirror I gasped at my reflection. It’s easy to forget who you are or why you are here when it feels like the demons of pain are inhabiting every part of your mind, body and spirit. You just want release.

Our March trip to Cincinnati for critical and overdue scans and appointments for Danica showed shocking images of her broken cervical fusion and hardware. They jolted me into an even more heartbreaking reality. A close friend visited me the week we returned. She knows in an intimate way how I suffer. I texted and asked her to wait a few hours later than planned before arriving. She told me she was prepared to perhaps find me dead when she arrived. She would be the one I wanted to find me. She wouldn’t blame me. My girls would just know their mommy was very sick, and my body couldn’t survive any more. She found me crumpled in my corner chair but very much alive. Couched in her compassion she reminded me I was the only one who could advocate for my sweet girl. I needed to live, and I needed to do whatever I could to be more well for the fight.

Deciding to live meant humbling myself AGAIN and asking for your help. You can’t know how gut wrenching begging is unless you’ve had to do it. I prayed for two things at the beginning of 2016. I wanted no new surgery, and I pleaded with God I wouldn’t need resources from you. He said “No” to both. He orchestrated the details for me to get an appointment with a very skilled vascular neurosurgeon at the University of Virginia right away. YOU gave us the money I needed to travel, pay for upfront medical costs and for the long hotel stay needed for diagnostic procedures and post op. I left my family and headed to the Blue Ridge. It was fitting I would find real help with dogwoods blooming all around. In a surgery not without complications my lumbar shunt and tubing was removed. I have two large incisions on my back and my upper abdomen from the tricky extraction. The surgeon then cut a flap on the top of the right side of my skull and implanted a VP shunt. The tubing begins in a hole drilled in my skull and snakes through smaller cuts behind my ear and down through my chest all the way into my abdomen where it empties excess cerebral spinal fluid that collects around my brain and causes the pressure. This shunt is different in many ways. Most notably it is adjustable. This means as pressure situations or my body’s reaction to them change we can re-calibrate without a new surgery.

I don’t have a headache. I haven’t had a headache since my surgery a month ago.

My pain was an incarceration. Most days I felt like I’d been thrown in the dark and bitter hole of solitary confinement. I’ve been adjusting to the sudden light and the sights, sounds, tastes and even smells of good. I didn’t know if it would happen. My husband and children didn’t know if it would happen. Every surgery and treatment has been like a parole hearing. The results of this VP shunt placement are a “YOU ARE FREE.” I know I’m out “on bond.” My body will fail in new ways and commit old crimes, but today, in the light, staring at the sun, I know for sure God heals. It is a mending that will come in fits and starts until heaven. I surrender to this, but I also believe He wants my resurrection to start HERE and NOW. He’s working out His kingdom come on earth in my heart and life. This is GRACE. Dear departed Kara Tippetts wrote these words in her book The Hardest Peace: Expecting Grace in the Midst of Life’s Hard as she slowly died from cancer.

“Jesus didn’t have to extend His love. He didn’t have to think of me when He went up on that cross. He didn’t have to rewrite my story from one of beauty to one of brokenness and create a whole new brand of beauty. He simply didn’t have to do it, but He did. He bought me. He bought me that day He died, and He showed His power when He overcame death and rose from the grave. He overcame my death in that moment. He overcame my fear of death in that unbelievable, beautiful moment, and the fruit of that death, that resurrection, and that stunning grace is peace. It is the hardest peace, because it is brutal. Horribly brutal and ugly, and we want to look away, but it is the greatest, greatest story that ever was. And it was, and it is.”

I’m remembering He loves me. He’s always loved me. In the hellish confusion I’d lost sight, but He was there. He’s always been there.

Resurrection is mine in Jesus.

Stunning Grace.

Changing light.

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Listen. One Word. And a health update

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Monica S. One Word 2016 (1)

“Somewhere we know that without silence words lose their meaning, that without listening speaking no longer heals, that without distance closeness cannot cure.”–Henri Nouwen

A decade ago I worked in marketing management for a very large builder in the Washington DC area. There were many wonderful things about this company, but one of my favorites was the intentional way they encouraged employees and departments to set yearly goals and break them down in manageable ways to ensure we could meet or exceed them. Our yearly bonuses were partly tied to the accomplishing of these goals. I have carried their model into my personal life. Even with a mostly broken body and a calendar where best laid plans fall to the wayside for health emergencies and setbacks I have felt an empowered purpose through continuing this discipline.

Another way this company poured into building up those in management was evaluating our personality types to help us better understand ourselves and those we worked along side. We also participated in what are called 360 peer reviews. These are reviews from your bosses or people in lateral positions to your own and more importantly from those you manage. I have utilized this same idea less formally in my close friendships and relationships. I regularly ask my husband and children how I can be a better wife and mother. I ask them what they are missing or needing from me.

Most of my work reviews were very complimentary, but there was one specific comment from someone I will never forget. “Monica feels the need to be insightful on every topic.” In a corporate environment entrenched in a culture of meetings I often found myself around a huge boardroom table of mostly men discussing land development, zoning and big scale financial projections. I took notes. I tried to keep up. I also felt a pressure to add something to the discussion to validate my presence. I know for sure there were entire meetings I was just waiting for the opening to say something and missed the opportunity to just be there, listen and learn.

This is the fifth year I have chosen a word in January as a guiding focus for the twelve months to follow. I began this practice in 2012 directly following my first big brain surgery and fusion. My word was “Possibility.” In 2013 it was “Restore.” In 2014 it was “Play” and last year it was “Commit.”

2016’s word came to me early on. I began to understand God was calling me to a season of more quiet last fall. In early September I wrote to you about “going away” for awhile. Without the real or imagined pressure to continue to say something I began to understand my head and my heart were being flooded with an impossible number of images, memes and calls to action. My ministry of prayer and support to an ever growing number of people in my EDS and Chiari community was creating a compassion fatigue so real I could no longer decipher between my own suffering and that of the ones I was carrying so close to my heart. Social media was smothering me. The desire to read everything my new and growing group of writer friends were publishing on the screen or on paper became an ocean that pulled me under. I was also advised to be working on building a platform for my book. Every moment of self promotion felt wrong. As the book became a finished document needing a champion, an editor, a publisher and yes, realistically, an audience, I became less committed to it. The book is a hard fought chunk of my soul, painstakingly built as an offering, and I began to doubt it would or could matter in the tsunami of stories written and published. Was I wrong about Gauntlet all along? Did I misread God’s providential leading and what I thought were blatant nudges to write and publish? I ignored and pushed off emails of industry people pursuing me. I became more ill. I had a brain shunt revision in October, another long round of plasmapheresis in December and four weeks of intensive chemotherapy that ended last week. I didn’t want to talk about any of it. As Dani Shapiro so poignantly writes, “A Memoir is Not a Status Update.” As much as I felt a responsibility to all of you who have prayed and encouraged and donated for oh so long I began to realize the little blips of sharing here or there were merely drops in a very real ocean of pain I’d been dressing up as a beautiful fight for far too long. The battle cry “Our Hope Remains” lost meaning. What if the Gauntlet has more land mines than gifts, and I’ve been selling a lie I needed to tell myself to survive?

At the very core of all this angst was the truth I had become completely overcome by a cacophony of voices other than God’s. I had forgotten the world is not waiting with baited breath for my next words. There will be others to like and comment. There will even be others who will hand write a note or send a text to encourage. There will be others praying too. Beautiful stories of courage and hope will be written and published, and I might miss their launch. My dear friends will celebrate birthdays and lose loved ones. Without the Facebook scroll I might be too late to mail the card or send the flowers. Babies will be born, and I’ll not see the vernix covered miracle within minutes of it happening. I don’t need to weigh my life against the beautiful meal you made, the new bracelet you bought for the best cause or the inspiring quote or Bible verse that got you through your day. I needed to turn it all off, and I did.

My word for this year is “Listen.”

I am reading Adam S. McHugh’s new book The Listening Life: Embracing Attentiveness in a World of Distraction. I am reading slowly. I am reading well. I am blown away by the over 1500 times in the Bible God asks us to stop, be still, hear, pay attention, take heed and LISTEN to His words. I’m even more struck by the amazing Grace of His willingness and desire to listen to us. I know for sure this gift of intimate relationship with my Heavenly Father, my Savior and the Holy Spirit has been hijacked by even the good, better and best “noise” of this world.

I’ve said February 1st is my January 1st. I’ve given myself the freedom to just float. When we put away the Christmas decorations I left the majority of space empty in my home. I’m learning to be still with the quiet. I’ve re-tuned my heart to the hear Grace in the fount of many blessings. I’ve returned to the comforting disciplines of first things first. Sitting at the foot of the cross is where I’ll hear Him best. The Bible is open. This is where I know for sure He speaks. “You become a disciple by hearing…This is the pattern that life commands. Listen before you speak. Learn before you teach. Hear the call before you lead. Absorb the word before you preach it.”(10) If I could bow my head I would, instead He bends His ear to me. (Psalm 31:2; 86:1) I forgot. He wants to hear me too. I find myself “at the heart of the gospel mystery–that the heavenly King not only speaks but listens…”(35) My prayers have changed. I hear Christ’s voice in Mark 10 asking blind Bartimaeus, “What do you want me to do for you?” I don’t need to answer in a hurry. He knows already and still He wants to hear me ask in faith, believing. Beautiful Grace.

I will wear the word “Listen” for 365 days. I will write it on my doorposts. I will study it, and it will change me. I don’t know what this means for my book or my blog or Facebook, Twitter or Instagram except I will continue to be quiet for at least awhile longer. I’m resting. I’m waiting to hear and obey.

Do you have a word you want to claim for 2016? What do you want it to mean for your life in the coming weeks and months?

The image of my 2016 word was created by Traci Michele Little.

(Here is a quick health update: I finished four weeks of a very targeted chemotherapy drug called Rituxin following my latest round of plasmapheresis. I will have bloodwork next week to check levels. Our prayer is this drug will keep the infection that attacks my entire body, especially my brain and heart, away longer. The horrible pelvic pain and bleeding I was experiencing has completely subsided since treatment. I continue to have days of great pain, especially in my neck and spine. The winter is always hardest on my body. Thankfully my most recent shunt has been managing the changing pressures. Our financial stress grows with each new treatment and especially at the beginning of a new year when all our deductibles and out of pockets begin again. The total on my insurance explanation of benefits from December 7th through January 7th was $67,000. When we are tempted to despair we are brought back again and again to God’s faithfulness. Dayenu. Enough. Please pray for our Danica who has been complaining of frequent leg pain. Over spring break we will spend several days in Cincinnati at the Children’s hospital to have scans and see neurosurgery and orthopedic surgery. As she grows we will see how her body sustains the experimental hardware used in her fusion and watch her lower spine curvature. We are ever grateful for your prayers and especially the faithful ones who remember even when I have stopped sharing out loud. We live in a shelter built by years of love, sacrifice and generosity. Thank you.)

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