Archive of ‘Health. Chiari, Ehlers-Danlos, POTS, Mast Cell, PANS/PANDAS’ category

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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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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Holding It All Together. A Team Danica Update

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Gauntletphoto

My Danica girl woke this morning and shuffled her way to my lap. She knows she will always find me sitting in my corner chair wrapped in a cozy throw with a cup of coffee in my hands. I put my steaming comfort aside, and make room for her. Her lanky legs stretch almost as long as mine now. She’s so tall it’s hard to kiss her head, especially with my fused neck, but I always try. Our fingers entwine, and I squeeze her hand as if to say, “Good morning, my dear. No matter what today brings I am here for you. I love you. Jesus loves you more.” Some of my favorite talks happen as she shakes off her sleep and begins to think out loud. Today her words took me off guard, “Mom, If God is in control of everything why did He even let sin and sickness happen?” I stumbled as I backtracked to Eden. Things were perfect, but there was this one tree. All God asked was for them to remember He was God and they were not. I see her reaching to make it more personal. Life is pushing her outside her mother’s faith and asking her to claim her own. Her next question knocked the breath from my lungs. “Mom, why did He take my miracle away?”

“It feels like an ocean of sorrow is under my skin…”

I haven’t been able to find words to tell about our trip to Cincinnati on July 26th. We left with incomplete information that has been filtering in since. Today we have more questions than answers. Danica’s rare and messy case has been escalated to new surgeons. We have been asked to return to Cincinnati quickly, on Thursday, August 18th, to discuss a joint effort with neurosurgery and orthopedic surgery.

“Even the ocean eventually meets with the sand…”

Since our March trip, when the scans showed the shocking views of broken hardware and broken fusion from Danica’s skull base to C1, we knew this was coming, but we thought we had months to watch.

“Sorrow on sorrow I’m waiting. Heavy I’m anticipating…”

My mama gut, made much more wise from years of reading X-Rays, CTs, MRIs and radiology reports in addition to dozens of neurosurgical and fusion surgeries of my own, told me the hardware was not the most concerning problem. Yes, it’s broken. It’s broken unevenly and moving on flexion and extension, but Danica’s own words told me instability was the greater issue. “Sometimes when I wake up my neck is stuck, and I have to reach up my hands and put in back in place. I hear a click.”

“Trusting the current will carry me.”

I finished my plasmapheresis before our trip and began my first of four chemo treatments on Tuesday. I’m worn so thin I’d swear you could see right through me. My dear friend came to sit with me at the cancer center. I told her how I was feeling. I cried. It’s as if those closest to me…closest to Dan, Delaney and Danica, don’t seem to understand this could be the thing that breaks us. It’s been almost a full decade of hard that can never be quantified. Dan is numb. Delaney is sad. Danica is scared. I’m completely and utterly broken. She told me I don’t wear it that way. I put on a clean shirt and some makeup. I smile and deflect the conversation to you. I say words about God as if the speaking makes them true.

“You are my strength. You are my song. You are my salvation. You hold it all together. You hold it all together.”

He is God. We are not.

“We come with great expectations and fears in our hearts.”

I didn’t know how to answer Danica this morning, so I reached for my Bible and turned to her life passage. My life passage. I read Psalm 139 aloud.

You have searched me, Lord,
and you know me.
You know when I sit and when I rise;
you perceive my thoughts from afar.
You discern my going out and my lying down;
you are familiar with all my ways.
Before a word is on my tongue
you, Lord, know it completely.
You hem me in behind and before,
and you lay your hand upon me.
Such knowledge is too wonderful for me,
too lofty for me to attain.
Where can I go from your Spirit?
Where can I flee from your presence?
If I go up to the heavens, you are there;
if I make my bed in the depths, you are there.
If I rise on the wings of the dawn,
if I settle on the far side of the sea,
even there your hand will guide me,
your right hand will hold me fast.
If I say, “Surely the darkness will hide me
and the light become night around me,”
even the darkness will not be dark to you;
the night will shine like the day,
for darkness is as light to you.

“Send us Your light as we’re making our way through the dark.”

For you created my inmost being;
you knit me together in my mother’s womb.
I praise you because I am fearfully and wonderfully made;
your works are wonderful,
I know that full well.
My frame was not hidden from you
when I was made in the secret place,
when I was woven together in the depths of the earth.
Your eyes saw my unformed body;
all the days ordained for me were written in your book
before one of them came to be.
How precious to me are your thoughts, God!
How vast is the sum of them!
Were I to count them,
they would outnumber the grains of sand—
when I awake, I am still with you.

“All of the earlier troubles, chaos and pain they unravel”

He is God. We are not.

This afternoon we snuggled in the big bed and watched the movie Miracles From Heaven. There were so many similarities to our story. The mama bear fighting. The faithful daddy staying behind doing what needs to be done. The older sister who gets a little lost in the shuffle and sacrifices more than most know. The crushing cost of travel for care and out of network doctors. The lonely divide the physical distance creates between a community of support and hospital halls walked alone. The hurtful words from well meaning people about why this is happening or how just a little more faith might change the outcome. Once again my girl’s little hand found mine. She squeezed it at certain parts. Parts I knew she understood fully because she’s been there. She jerked it away to wipe the tears running down her cheeks. I asked her several times, “Is this too hard for you? Do you want me to turn it off?” She wanted to see it through. We hugged as the credits rolled. I didn’t need to tell her I was skeptical about visiting heaven and living to tell about it. I didn’t need to explain to her how against all odds God can decide to heal someone completely. She felt the power of the narrative, because she knows it to be true.

He is God. We are not.

Danica is sleeping next to me now as I peck away in the dark. She asked for the heating pad for her legs and the cold pack for her neck. Dan is gone working overtime all day and night. Delaney is at a bonfire with her girlfriends. I wandered back to the old Team Danica blog and read the posts from August, 2010. It’s unsettling how easily they could have been written this month, six years later. There is one glaring difference. We know for sure…

He is God. We are not.

We’ve seen His faithfulness in the land of the living. We’ve seen Him provide. We’ve seen Him make a way when there was no way. We’ve seen Him bind up our wounds and heal our broken hearts. We’ve seen Him preserve our marriage and our family. We’ve seen Him rescue us from the root of bitterness. We’ve seen Him shine through the darkest night. We’ve seen Him perform a real in the flesh miracle.

“Looking ahead we rejoice in You.”

He gives and He takes away. Blessed be the name of the Lord.

Danica, I believe this, my brave girl. I do. I want to mirror this to you. A thousand things are happening in this one thing.

He is God. We are not.

September 20th, 2009 we found out Danica had a Chiari malformation. Not knowing all that would mean, I wrote this:

Do I believe God makes no mistakes? Do I believe He lovingly formed this child’s skull and brain how we find it today to fulfill His purpose in her life and in ours? Do I believe we lack nothing God’s grace can’t give us including strength for today and the days ahead? My verse for this week has been Mark 9:24 “I do believe; help me overcome my unbelief.”

I’m afraid. I’m so very tired. I know that trusting God with my child is perhaps the hardest thing He will ask me to do. As He grows my faith and asks me to rest in His promises. I will fall. I will have moments of anger and confusion. I will want to quit and walk away.

Oswald Chambers wrote, “Living a life of faith means never knowing where you are being led. But it does mean loving and knowing the One who is leading. It is literally a life of faith, not of understanding and reason — a life of knowing him who calls us to go.” Knowing a God who is unchanging and will do everything He says He will do is the only way I will navigate through the next weeks and months. I believe.

“You are my strength. You are my song. You are my salvation. You hold it all together. You hold it all together.”

Tonight. This song from All Sons and Daughters upcoming album Poets and Saints is on repeat. My heart melody. Part lament. Part praise. Yes.

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When I Simply Cannot Pray. Help

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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

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“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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An Inch Of Daylight. If I Want To Live

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inchofdaylight
“My heart is troubled, my strength fails me,
And the light of my eyes, even this is not with me.”
–Psalm 37:11

It was a shadowy week.
Not just Ohio cold and grey.
Not just smudged with Lenten ashes grey.
Not just a big inky cloud I can’t explain away grey.
It was so dark I couldn’t see my hand in front of my face.

Every morning I woke early with my family to move through our routine. As soon as they left for work and school I would make the girl’s beds, wipe the kitchen and bathroom counters and sinks, straighten the house for Better Homes and Gardens and then stumble to my own bed. Curled in the fetal position under six heavy blankets I was gripped with a paralyzing fear this would be the time I might not find my way out of the chasm of despair.

If you’ve ever tried to die before you understand there’s nothing worse than failing at it. If you’ve ever endured intake for an attempted suicide you understand the high stakes to get it right the next go round. I don’t believe in levels of hell, but if I did a hospital psych ward would be at the very least level one. This knowledge makes the slipping even more frightening. I can make a way of escape once and for all or I can hold on here. The lie is there is no real help to be found in the middle.

“On a scale from one to ten how likely are you to harm yourself?” The wrong answer to this question lights a fuse you have no power to put out. It’s really better to fudge the numbers. “Have you thought of specific ways to end your life?” Never, ever tell them how you would do it. People who love me and have sensed me slipping away say, “Call me. I mean it. Anytime of the day or night. I’m here.” They remind me I have to let them know when it gets this bad. If I’m faking being okay when I’m not they can’t help. I run through the short list. Lord, people have so many hard things to deal with. I can’t be one of their hard things one more time.

“My soul is exceedingly sorrowful, even to death.
Stay here and watch with Me.”
–Matthew 26:38

Until a few years ago, when I was finally diagnosed with Autoimmune Encephalitis and Adult PANS/PANDAS, I could only explain the sudden onset of the episodes as if a demon was coming over me even though I knew I was ultimately protected from them. I was mostly happy and hopeful even in the midst of intense daily pain and extreme life stress. Out of no where it would rush over me. I wanted to die. My healthcare professionals continued to try to understand and treat me as some variation of Bipolar, the best diagnosis they could squeeze out of the DSM. I now know there are chemicals, bacteria and viruses able to hair trigger me into debilitating physical and neuropsych symptoms. These are things completely out of my control, and my autoimmune disorder sets me up for continuous infections and cycles of sickness. As soon as I begin to feel unwell physically I become disoriented by hissing lies about the worth of my life. I have never really fit the depression diagnosis. I’m just not a sad person. Serious, yes. Sad, no. Every time it happens there is a moment when my mind and heart fade to black. The physiological starting place is compounded by a life of what can only be described as continuous pain that is often excruciating. This means I am already always standing on the ledge.

You want to live a long life. You want a future and a hope here on earth. You are maybe even afraid to die. I want release. I know there are people who need me now. I believe God has a purpose for me or I wouldn’t still be alive, but I want to go. I’m ready to go.

“Then they cried to the Lord in their afflictions,
And He saved them from their distresses;
He sent His word and healed them,
And delivered them from their corruptions.”
–Psalm 106:19-20

This year I am working through the She Reads Truth Lent study. It’s good. The best part is it’s mostly just straight up God’s Word. When your heart is torn wide open and fleshy with need the living and breathing part of Scripture finds an especially perfect soil to take root.

I am crying to Him in my distress.
I’m LISTENING hard.
I’m pointed east.
I’m looking for the light.

Another Lent resource I have used for many years is a small book of daily readings by Emilie Griffin titled Small Surrenders. She suffers from chronic illness and tells of one of my favorite poets, Gerard Manley Hopkins, as an example of a man “plagued by frailty and weakness, not just physical but psychological. At times he would plummet into an abyss of darkness, what he called ‘cliffs of fall.’ The steep dropping-off places of the soul seemed worse than any physical distress. This, therefore, was Hopkin’s prayer, his hope: ‘LET HIM EASTER IN US. BE A DAYSPRING TO THE DIMNESS OF US.’

The sun was shining this morning as I drove to my counselor’s office. I played the JJ Heller song “Daylight” over and over and over again on the way there and the way back.

There is an inch of daylight underneath the door.
It’s enough for me to fill up my canteen.

If I want to live
Your love is what I need.

Be near me.
Be near me now.
Be near me.
Be near me now.

There is an inch of daylight underneath the door.
It’s enough for me to fill up my canteen.

If I want to live
Your love is what I need.

“You do not want a sacrifice or I would give it; You are not pleased with a burnt offering. The sacrifice pleasing to God is a broken spirit. God You will not despise a broken and humbled heart.”–Psalm 31:16-17

Photography by Cindee Snider Re. Used with permission.

JJ Heller’s “Daylight.”

(Thank you for praying for me in the “Shadowlands.” This is the first February in several years I haven’t been able to escape to Arizona. Those trips were times of retreat and healing but also reminders I could be some better. I’m missing the desert. For me it was a little like the Promised Land.)

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Love Is A Mix Tape. You Stay

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46087325a7a799ff1cd67cea1266d2dbfb88fa5

Every morning your alarm goes off at 6 am. I hear you slide out of bed and into the shower. I ease from my pharmaceutical induced sleep into first prayers. Danica pads in from her room and crawls into your still warm place under the pile of covers for snuggles. The sure whistle of the tea kettle ends our snooze. I force my aching joints and fuzzy head upright and shuffle to my nest chair. Within minutes I’m wrapped in blankets and warming my fingers around a favorite hand thrown pottery mug. I always close my eyes for the first sip of the life elixir you French press for me. I taste your care in the special mix of beans brewed with precision and the perfect amount of cream and sugar. We don’t speak. The familiar and comforting aroma and taste greet me gently and say, “Good morning, my love. I cherish you.” After you make breakfast for Danica you join me in the living room for ten minutes of together. You look across the room into my eyes and find the answer to the question of how you will feel for the day.

Last week I woke with a sharp pain around my shunt. You could tell I was wincing, and my breath would catch when the knife came. Tears welled up in your eyes as you told me what it feels like to watch me suffer. You said every time I’m hurting you are too. You said as hard as it is to be me, it is perhaps even harder to be in love with me. It is pain multiplied. You are powerless to make it stop or even a little better. You would take it from me if you could. I know this, but I would never suppose you could survive even a day of the ache I’ve learned to master over a decade. It is mine to bear and yours to watch.

Saturday night we sent our girls away to celebrate fifteen years of promises made. Delaney was disgruntled, and I told her she is old enough to understand just a little how a man wants a woman and a woman a man. I told her she is lucky her parents are still madly in love and wanting time alone. Our plans to dine at our favorite restaurant were cancelled because my brakes began grinding and scraping. We haven’t been there for five years, since our tenth. We swore we would always make these milestones count no matter how poor but with the unknown cost of mechanics we didn’t chance it. Instead we went down the road for a cheese platter and cheap red wine. It was a feast for us. We told our love story back and forth to one another. The waiter brought us a piece of chocolate cake to share. I’m sure he thought it odd neither of us wore wedding rings, yours needing sized smaller and mine with the big gaping hole where the diamond used to be. Broken traditions, symbols sold, no gifts exchanged or surprises planned, just our rare and enduring romance built on a foundation of precious things no money could ever buy.

We came home and danced heart to heart to the melodies of our personal soundtrack until there was no space between your body and mine. God talks about two being one. Most consider this hyperbole at best. Why would you ever give all of yourself to someone else? Why would you sacrifice every bit of power and protection over your own heart to be true to another? Why would you forgive betrayal? Why would you stay? Why would you keep staying when life would be easier almost anywhere else?

You buried your face in my war torn neck and told me I am the most beautiful woman in the world. You traced my many scars with your fingers remembering the hard fought battles they represent but also the Grace, the healing and the Hope. You say you love me for almost everything I am, not in spite of it but because of it. You stay because my heart is your home.

Seventeen years in love. Fifteen years married. And the band plays on.

(Photo by Grace Designs Photography. Used with permission. From our anniversary photo shoot five years ago. I love we are wearing our rings here.)

This is side A and B of a mix tape that tells our love story. There are many more songs, but this is a framework. Enjoy. (I apologize for the clunky YouTube links.)

Be inspired. Splurge on itunes to make a mix tape for your love. Sneak it on their ipod as a surprise or burn a CD for their car. (Am I the only one who still burns CDs?)
What are your favorite love songs?

Hero. Enrique Iglesias. (Our first song. Dan used these lyrics in my 40th birthday toast.)

Bless the Broken Road. Rascal Flatts. (What a terribly broken road we both walked until we found one another. No regrets. If even one thing had changed we might have never met or loved.)

I Don’t Want To Miss A Thing. Aerosmith. (Armageddon was one of the first movies we snuggled up on the couch and watched together. I still cry when I hear this song.)

Your Arms Feel Like Home. 3 Doors Down. (For the first time in years I was safe. Dan was home.)

All That I Am. Rob Thomas. (Dan’s vows to me.)

Making Memories of Us. Keith Urban.

Better Together. Jack Johnson. (Good years. So good.)

Love Remains the Same. Gavin Rossdale. (We were both lost and wandering apart, but at the root we were still oh so in love.)

You Stay With Me. Faith Hill. (I broke promises. Dan forgave. Dan stayed.)

Let It Be Me. Ray Lamontagne. (Dan asked me to marry him again.)

For You. John Denver. (Our five year vow renewal song.)

These Are the Days. Sugarland. (Grabbing sweet moments.)

Steady As We Go. Dave Matthews Band. (Danica was broken, and we didn’t know how to move.)

Dancing In the Minefields. Andrew Peterson. (We needed to love like Jesus to survive.)

I Won’t Give Up. Jason Mraz. (We couldn’t imagine life would get any harder, and then it did.)

Broken Together. Casting Crowns. (By His Grace alone.)

Thinking Out Loud. Ed Sheeran. (Our Tucson Song.)

Better Days. Goo Goo Dolls. (Our continued anthem and hope.)

Dance Me To the End of Love. The Civil Wars. (Fifteen years. Still Dancing.)

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Listen. One Word. And a health update

by

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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