Desert Rain. A Dan Post

by

rainbow
If all of life were sunshine,
Our face would long to gain,
And feel once more upon it
The cooling splash of rain.
-Henry Jackson Vandyke

I was born in Kirkland, just outside of Seattle, WA. This fact alone is nothing special unless you consider my parents and siblings were all from Virginia. My childhood was spent playing from dawn to dusk in the city neighborhood of St. Charles, Missouri followed by my formative teen years in southern Maryland. My wife and I met in Northern Virginia where I owned my first home. Delaney was born in Rittman, Ohio and Danica was born in Rockville, Maryland five years later. “Glass half full” readers will appreciate how adventurous my life has been while “glass half empty” readers might look upon this never putting down real roots as a challenge. I tend to view the volume of liquid in my glass as what God has provided, nothing more and nothing less. But my soul aches against this simplistic truth.

Thanks to blessings beyond what words can describe, I live in Tucson now. My daughters attend a Christian school and my wife no longer suffers debilitating pressure headaches every day. Hours upon hours of mowing the yard, raking the leaves, shoveling snow or driving in inclement weather are of no concern here in the desert. I rise each morning with the light anxious to stare at the everchanging mountains as each peak slowly comes into focus while the sun travels across a pure blue sky. Desert tan ridges and valleys turn orange as the sun sets to sleep in the west. The firework finale is held each evening as the sun disappears exploding its prism of orange, pink and yellow rays of light far into the atmosphere. We step outside this borrowed home almost every night to marvel how He does it again and again. The photos we post online do not come close to conveying this experience in person. The many stars in the clear sky get brighter each hour. My soul is still searching.

I haven’t written here in a very long time, but if you read Team Danica you might remember I referenced my favorite book in the Bible as second Corinthians. Paul encourages the readers that God’s Grace is always sufficient, and His power is strengthened in weakness. My family and I’s hardships and faith struggles have been well documented by my wife. But my private weakness, something I rarely share, is in not trusting the Lord enough even after all I’ve seen Him accomplish. I feel like I have been left wandering in the desert for forty years fearing each day and what’s to come. Every morning my last words to my girls as I drop them off at school are, “BE SAFE, BE SAFE.” Energized by the Tucson climate and a true chance to be more well my wife is exploring more of her world, venturing off to the grocery store, a Bible study or the writing workshop she just began. When we sit and talk in the evening, I am always fearful she will tell me she’s twisted her neck or spine. I live just one breath away from her or Danica needing another surgery. When most men my age have achieved success in their career and may be thinking of retirement, I am still needing to update my job resume and plan for interviews. I’m faced with a feeling of shame and despair that I will never be able to fully provide for our complicated needs. When most families I know are secure in their home and saving memories, I am stressed about where we will live when our current miracle runs out. We have seven months left in this house. My soul is restless.

It’s been raining all day here in the desert on this Super Sunday. My wife has a headache though it’s a “Tucson headache” which means she can at least get out of bed, but her heart hurts where her shunt empties fluid. She is running mostly on adrenaline now. We will be driving almost two hours away for her first Arizona infusion on Wednesday. Her autoimmune encephalitis/PANDAS/PANS symptoms are worse every day. She’s gone too long between treatments. Medicare finally approved paying eighty percent of this very expensive drug. Driving far for health appointments is nothing new, but we feel the same dread every time. I plan to study the long six to eight hours during her drip for a new technical certification with hopes that I can find yet another job to support my family more adequately. Even if a new job just means being able to add primary insurance for Monica it will be better.

We read in the book of Isaiah this morning. In verse two of chapter forty-nine he says, “…in the shadow of His hand hath He hid me, and made me a polished shaft; in His quiver hath He hid me.” I feel like I have lived in the shadows most of my life. I’ve never seen them as protection or a version of grace. Only since our move here have I gained a perspective to try and understand all our hard and all your love as a kind of holding or covering and maybe even safe hiding. But I’m tired. So tired. My soul longs for rest.

Each morning I do what my father taught me. I wake up and slay dragons. I do the next thing one day at a time. I do not boast of my struggles, for when I am weak, for Christ’s sake, then I am strong. My gratitude for those who have walked with my family and I over the long years is unbounding. It is with deep appreciation that I strive forward. A wandering soul was born in the west years ago. Now when I see a shadowy cloud seemingly lost in the blue sky I will remember it can be shelter. When I feel the desert rain I will understand it is the watering of a rooting soul at peace.

You might also like

Fellowship of The Broken

by

IMG_1450 (2)

“Never be afraid of broken things–because Christ can redeem anything.”-Ann Voskamp, The Broken Way

I should have stayed home. My very flared and untreated Autoimmune encephalitis/PANS symptoms have kept me from restorative sleep. My face twitching. My shoulders dislocating. My brain swelling. My heart hurting. My neck screaming.

I pushed hard to make it to my first memoir class at The University of Arizona Poetry Center last night. Five Monday nights I’ve committed to learning about this thing I know I’m called to do. I want to do it well. Writing comes instinctively, but writing well comes from practice and a community of others who know more than I do. I drove to downtown Tucson and sat around a cluster of tables for over two hours. Reading aloud. Writing exercises. Sharing and discussing. I tried not to strain my neck, but it’s rude to keep your back to someone continually or to not look at them when they are speaking. I wish I could wear a sign. People so kindly ask, “Do you have a stiff neck?…Were you in a car accident?…So, you can’t move it at all?” It’s exhausting. The class was everything I’d hoped and more. I drove myself home in the dark. This is big, brave stuff. A year ago I couldn’t have imagined trying to do anything this independent and long term. I was excited and grateful. But I was hurting.

This morning was week three of a Tuesday morning Bible Study at the church we are attending. I missed last week, because I was in bed all day. It was one of a hand full of days since we moved here I could not move through the pain. I wanted to go so badly. I’d done my reading. I missed the ladies I met at week one. I rose early, got dressed and did my hair. If you know about the spoon theory you understand this getting ready to go somewhere can be more exhausting than the going, especially on bad days. I saw my family off to school and work. I looked in the full length mirror. In my head I heard, “But you don’t look sick.”

It’s hard when no one knows your story. I don’t want to lead with the pain. The version I’ve been telling is a quick synopsis. I was very sick for a long time. I had four shunt surgeries in 2018. The last one was August 12th, and we picked up and moved here just two weeks later. It sounds crazy because it is. People can’t believe we came here without Dan having a job. They can’t believe I took the risk of losing insurance and access to treatment. They can’t believe much of the story, and I’m giving them the cliff notes and leaving out the miracle provision that told us to go. A variation of this conversation happens every time I meet someone. I want to leave the hard parts out and shine it all up. It’s grace. Monica, don’t forget to tell them it’s ALL grace!

I’d made it almost all the way through our study when the dear leader looked at me. There were already tears balancing on my eyelids threatening to fall. I was holding my left shoulder in place with the opposite arm. She noted I’d been quiet and asked if I wanted to share. Others had been talking about finding time to pause and be with God. Most communicated the difficulty of juggling all they had to do with the desire to meet Him regularly. I began to cry. I said something silly like, “I want to be the one who brings the cookies.” I want to be doing and serving. I want to host another Option EDS-the retreat this May in the Outer Banks. I want to help others find the most well life by building a non-profit here that will support a respite house. I’ve had a decade of quiet time. Hours and hours of time alone with God in prayer and in His word. I want to finally tip the scales of all the love my family and I have received and somehow become the abundance for others. What if I could somehow earn all that love on the backend. Then your scandalous support wouldn’t have been wasted. Yes, God, that’s what I want to do.

I chose the class because it is a study through Ann Voskamp’s The Broken Way. I read this book when it released in November, 2016 at the bedside of my Danica Jean at Johns Hopkins. I’d had major fusion just five weeks before her scary brain and spine surgery. I was utterly broken and terrified. My copy is marked up and cried over. I pulled it out of a box in the garage for this study. My brokenness is different today. I’m bleeding from a wound I didn’t even know was there. In this starting over life of more well, and I have been much more well, a strange desire is eeking out. These people don’t know how busted I am. They don’t know I’ve lost everything. They don’t know… I’ve said it over and over. I want the story to be something new. If I put on pretty shoes and some lipstick and smile while saying how good God is all the time maybe I won’t have to be known for my suffering.

Sitting there crying in front of all those beautiful women I heard Ann’s voice,

“I hadn’t known that full cruciformity looked like this. To give someone your broken heart means breaking pride, breaking lies, breaking fear. There’s no communion unless someone breaks their ego. All along, had I only been scratching the surface of what it meant to be broken and given? How had I not lived like the brokenness itself is a gift?

Why not embrace the life work of embracing suffering, embracing brokenness? Why avoid the gift of more God, more vulnerability, more intimacy, more communion–the gifts brokenheartedness offers? Why had I found that terrifying to incarnate? Suffering is a call for presence; it’s a call for us to be present–not only to the brokenness in the world, but to the brokenness in our own soul, and to risk trusting others with our wounds. I think that is what’s terrified me–trusting others with my wounds…”

For ten years I blogged with open wounds. I bled right here on the screen, and you met me, sat in my brokenness and loved me like Jesus. My gifts in the gauntlet were more God, more vulnerability, more intimacy and more communion. I never felt alone. And then I stopped. In my pride I wanted to move the trajectory of my story to something new.

Those ladies joined hands and prayed over me. I haven’t had in the flesh prayer like that since the circling of prayer at The High Calling retreat in 2014. Everyone of them is broken too. I’ve just begun to hear their stories. The broken body of Christ. The visible invisible flesh and bone of God’s redeeming love.

“The fellowship of the broken believe that suffering is a gift He entrusts to us and He can be trusted to make this suffering into a gift.”

Gauntlet with a gift.
Always a gift.
Always grace.

I’m sitting in the dark now. I’m exhausted, but my brain is on fire, and I know rest will not come easy.

In my efforts to resurrect my book manuscript I’ve come to a clarity that changes everything.

My story only matters to the extent it is part of His story.
My brokenness. My pain. My loss. My healing. My hope.
It’s by Him, for Him, through Him or not at all.

I will crawl into bed with the hearts of all the hurting I know and love and the faces of my new family. I will pray. This is my endless and proper work. Be still, my child. Lean hard. This broken way is the only way.

“Never be afraid of broken things–because Christ can redeem anything.”

“The LORD is close to the brokenhearted and saves those who are crushed in spirit.”-Psalm 34:18

Once again the “Image of God” is on repeat. Christa Wells came to the EDS retreat in May for a private concert for the girls and their moms. I helped her make the set list, and I asked her to end with this song.

The fellowship of love is the new story.
Suffering is the footnote.
The miracle happens in the breaking.
My Hope remains.

You might also like

Fear is a Liar. God is Enough

by

Fear is a liar

“By faith Abraham obeyed when he was called to go out to a place that he was to receive as an inheritance. And he went out, not knowing where he was going. By faith he went to live in the land of promise, as in a foreign land, living in tents with Isaac and Jacob, heirs with him of the same promise. For he was looking forward to the city that has foundations, whose designer and builder is God.”–Hebrews 11:8-11

Have you read Hebrews lately? I’ve always loved chapter eleven. It’s like a highlights reel of the faithful and brave from the Old Testament. There are a lot of relocation stories scattered throughout. We know there was bold trust in God, but these men and women were human. They had the same needs and desires for a secure home, close family and friends and daily provision we all do. I picture Abraham holding a family meeting to discuss the big move. There was no elaborate relocation package or move coordinator provided. Just a sure call to GO.

Everyone asks how God picked our family up in early August and carried us here so quickly. Even though we’d prayed and asked you to pray for this move west for several years it always seemed just too hard and scary. There was a life changing gift in 2017 that began to make the way. After our trip to Tucson in May we took bold leaps of faith even to the point of preparing the house to sell and renting an apartment here, but things fell apart. In late July after two of the three shunt surgeries I journaled a prayer asking God to help me let the dream go if it wasn’t His will. I questioned if my deep desire to move was motivated by me selfishly wanting to be more well at the expense of my marriage or our family’s highest good. There were people who told me I should come here alone or the girls and I should come and Dan follow if and when he found employment. They said it would be choosing life. My husband sacrificed for me over and over again, and he stayed. When almost any other man would have left. He stayed. I would stay with him too.

From the very first serious talks about moving here I knew Dan was the most afraid. As the sole provider he did not believe we should move unless he had a job here. Finding a job here while in Ohio was complicated, and we did not have the resources for him to travel back and forth for interviews that might become dead ends. Dan’s resume is not deep. He worked faithfully for over a decade at his IT job to provide the best insurance coverage possible for the complex medical needs of our family, most notably many out of network physicians and surgeons. During a time when most men would be taking opportunities to advance in management or more responsibility Dan did not. He worked hard. He worked overtime. He took the menial jobs of hardware setup and moves that no one else wanted. He worked more holidays than I can count. But he never got ahead. Along with this faithfulness came a position of humility not many men are asked to take. He was a beggar. There was no way he could fully provide as our list of surgeries grew longer and our travel took us further. He assumed the position of grateful accepter of help. It wasn’t until the miracle phone call on August 2nd that he heard the clear directive to go.

Only a few of you have been reading from the beginning…since Team Danica. After her second brain surgery and big fusion leading into my own decompression and fusion we moved into the lower level of my parent’s home. There was perhaps nothing more humbling for Dan than that. In late 2012 God made a way for us to have our own home again. It was an accessible ranch less than a mile from my parent’s house and the girl’s school. Our medical debt was truly only beginning, but it had already leveled us. My parents bought the home and rented it to us with the spirit of it being completely our own. We loved it as such. I’m crying as I write this, because I miss that house every day. A little three bedroom ranch with a cozy nest corner I thought I might die in. For a family who felt so unrooted and who was struggling for light and breath in a basement this place was a gift beyond measure. My disability being approved allowed for our payment to be faithful and on time every month. We had no retirement, no savings account and lots of agreements to pay massive debt, but we settled in on the safety of having a home. We never took it for granted.

Moving here meant leaving the one thing Dan and I felt we most needed. Our home. It was terrifying.

This is what I’ve learned.
Fear is a liar.

I’d scribbled this from Ann Voskamp into my planner:

“The greatest motivator can be fear. This will kill you. The greatest fear can be that grace won’t be enough. We won’t be enough. This fear is a fraud. Let go of the lie. All fear is executed with one line. THERE IS ENOUGH. Fear invites the impossible to happen. All fear shrivels when you serenade it with one refrain: THERE IS ABUNDANCE.

This is my life song.
Dayenu.
Enough.
More than enough.
Manna.
Today.
Perfect love that casts out fear.
Gratitude.
Peace.

God gave us a buyer for our lovely home immediately. It cost $6,731.89 to move our things even though we’d sold what seemed like most of our furniture. (It turns out books are the most expensive thing you can possibly move.) Shipping Dan’s car was $1,350. Plane tickets for our family to fly here were $1,200. My sweet old 2003 Murano with the aftermarket backup camera that gave me my little bit of freedom and independence when I thought I’d never drive again was not worth shipping and would have never made the drive here so we left her behind. We had to rent a car for several weeks so I could immediately help get my girls clothes and supplies and settled into their schools. All of this seemed impossible. It was scary. But God made a way. We moved here with Dan on FMLA and no job. The one thing Dan said he wouldn’t do…he couldn’t do, he did. There were several months we completely lost our medical coverage, the one thing we thought we could never let lapse. But we did. There was a sure call to GO.

We came here on a 365 day plan. Through what I like to call “the economy of love” God’s provided this home for a year. We have seven more months with this view. God gave me a beautiful, safe, reliable car that will last for many years. It was literally dropped off in my driveway several weeks after we arrived here. Crazy love.

Dan and the girls are insured now, but I am not. I have Medicare, and I’m finding roadblocks for access to care over and over again. I’ve already needed to fly back to Ohio for my chemo. I’m due for an infusion now. Medicare has denied payment for this expensive treatment I’ve relied on for over two years. Dan is underemployed. He needed to take something. He needed to get at least some insurance coverage. We cannot live on his salary. The girl’s amazing, loving, God’s arms around them every day school is costly. Without it we never would have moved here. It is how we chose this part of Tucson. If they aren’t okay I would never be more well.

This is what I’ve learned.
Fear is a liar.

This is my life song.
Dayenu.
Enough.
More than enough.
Manna.
Today.
Perfect love that casts out fear.
Gratitude.
Peace.

The faithfulness of God has been our food and shelter and medical care. We’ve been supported by the relational redistribution of your abundance. It’s made us rich beyond measure in every way that truly matters. It’s a story you’ve helped write and one I’m only now beginning to tell.

Last week I felt the most well I can remember ever feeling. I’m fully alive for a reason. God did not bring my family and I here to live only unto one another. He is calling us out in more faith to trust Him for each next thing. He’s growing something from the investments you’ve made in us to give to others. I’m sure of it.

What is your greatest fear? Bring it out of the dark places of not enough and let God’s perfect love shine on it. Name it. Take a deep breath and risk to walk into the lie. It will lose it’s power.

Fear is a liar.
God is enough.

Our Hope remains.

You might also like

How Are You Feeling? Two Arteries

by

Hope in the Desert
“This is not despair,
not the retreat into the deep wound
but a conscious living of each day

This is the placing of one foot before the other,
not the free stride of the unencumbered
but the careful tread of the initiated foot

This is learning how to walk
without familiar landmarks, alone
even in the company of others,
not ready yet for new direction

This is the living of each day, aware
that what you cannot predict
may still loose sudden tears, yet
that laughter too is possible

This is when you struggle
as plants in arid soil
strive without conscious knowing
to stay alive until the rain

This is a time for faith
that this most naked agony of loss
will ease, and not corride the spirit

This is the time to trust that day after
labored day you will move forward,
open to joy as well as pain;
two-sided coin, you proffer for remembrance.”
–Maude Meehan

I’m sitting in my new nest. I shuffle to my spot just before dawn and settle in to watch the pink glow grow over the Catalinas. Dan and I share coffee here most mornings before he leaves for work. These quiet moments together are an intentional touchpoint. It’s often the only time in a day we may sit face to face and focus on one another. He leaves, and I turn to my morning rituals of meditation, reading, journaling and prayer. To be home. To be in a kind of sustained rhythm is something I was made for. Something I longed for. I don’t take a minute for granted.

The life of chronic illness doesn’t set you up for regular soul nourishing habits. There are days you simply cannot get out of bed. Meditation is impossible unless you count focusing on the pain. Scratching down feelings often magnifies the ache. Prayer is mostly, “Please, Jesus.”

Everyone asks how I’m feeling. They want to know if I’m as well as I look in the sporadic photos I’ve shared on social media since arriving here in Tucson on August 25th. It’s a tricky question. It’s a difficult answer. I often say, “I’m healing but never healed…” Everything I experienced during my previous winter visits to Tucson has been realized. But I will always have Ehlers Danlos Syndrome. This genetic mutation is forever embedded in every part of my connective tissue. I know I am fearfully and wonderfully made.

I have significantly less pressure headaches and symptoms. This was the main reason we relocated here. My Intracranial Hypertension was unbearable. After nine various shunt surgeries we understood current shunt technology coupled with my challenging anatomy and EDS would never bring lasting relief, especially in northeast Ohio. Quite frankly I wanted to die. After surgery on July 4th and again on the 9th I was back home lying in my dark room in unspeakable pain, and I couldn’t see my way back to Hershey for a revision. I was done. I’d felt this hopelessness before, but the miracle that arrived in a text and a phone call on August 2nd gave me the courage to crawl back into the car and take the long turnpike trip back to Pennsylvania for another revision. Removing a mess of old tubing from my abdomen and rerouting the tubing to empty the cerebral spinal fluid into my heart was something I said I’d never do. I have a cardiac condition called Postural Tachycardia Syndrome (POTS). I have a Pectus Excavatum, a bone malformation of my breast bone that curves inward and pushes on my heart and lungs. I have chronic Strep infections (PANDAS/PANS) that cause heart inflammation. I have stenosis in my right ventricle because of multiple central lines placed for plasmapheresis. When my neurosurgeon came into my room and so calmly stated what he needed to do I didn’t think twice. The hope of the move gave me courage and faith. The surgery was a success.

Do I need my shunt here? Yes. I now have two working shunts. On calm and sunny days I still hear my brain shunt buzzing when I move positions, particularly from sitting to standing. On rainy days or when the pressure is changing more drastically, something that happens much less frequently here but is still a catalyst, I can feel it working overtime. I can also feel it in my heart. It cannot always keep up. I’ve a handful of days I needed to be in bed because of the pain and symptoms. If nothing else changed about my health except this one thing it would be enough.

The above poem describes the “conscious living of each day” my new home allows. It is a slow and careful movement through foreign or forgotten neuro pathways and literal paths too. The smallest thing can trigger the trauma and tears. Much of the reason I’ve been so still and quiet is to process and unpack the accumulated grief and suffering. But I am finally in a place where I can bury some of the hurt.

I catch myself laughing. Even out loud. I’ve stopped biting my cheeks. My face has relaxed from the constant furrow of pain in my brow. I walk past a mirror, and I see a woman living not just surviving. Ann Voskamp wrote, “Joy and pain, they are but two arteries of the one heart that pumps through all those who don’t numb themselves to really living.” For oh so long I was necessarily numbing myself. Now I lift my face to the sun and listen to the strong beat of a heart that knows joy and pain and can celebrate them both equally. The rise and fall of my chest is a new song of praise. I don’t want to forget. My God wants me to remember so long as I tell the story rightly and point to the healer of the heart’s eye through which He is seen and glorified.

“Come and hear, all you who fear God; let me tell you what He has done for me.”–Psalm 66:16

(For those of you specifically interested in the other areas of healing I’ve found since moving here I will slowly continue unpacking them in future posts. My heart’s desire to invite you into a respite place in Tucson is perhaps the most real calling I’ve ever had. I’ve seen miracles. Nothing is impossible with Him. Stay tuned.)

You might also like

In Returning and Rest

by

Sunset

“Quietness is a receptive emptiness. Only the meek will inherit the earth because only the meek have room within themselves to receive such a wide and wild inheritance.”–Christie Purifoy, Roots and Sky: A Journey Home in Four Seasons

“In returning and rest you shall be saved; in quietness and trust shall be your strength.”–Isaiah 30:15

This was my favorite verse as a child. I didn’t fully understand the context of Isaiah 30, but something in me knew even then about how easily my heart and life could slip away from my deepest need and purpose. The clamor of the world so easily fills up sacred space reserved for relationship with God. “The bread of adversity and the water of affliction” get noisy too.

It’s been one hundred and forty-one days since I’ve published anything here. I had the fourth shunt surgery this year, and God quickly and decidedly picked up our family and carried us to Arizona. The time away from this blinking cursor has been a season of necessary retreat. I’ve leaned into the Lord who waits to be gracious to us and exalts Himself to show mercy to us. Since late August I’ve stepped outside my tent to breathtaking desert and mountain vistas. The sun rises over the Catalinas and sets behind the Tortolitas. This is my manna. This is my promised land. This is my home.

One of only five posts in 2018 was in early February. I was finally regaining my memory from the November spinal surgery and Aslan was on the move. I never could have imagined just how powerful the hope I felt would be worked out in the months to come.

There have been dark days of doubt in this Gauntlet, but deep down I’ve always known every single detail of our narrative was more about Him than us. We’ve pleaded with God for a break in the suffering. We’ve begged for a time of peace and restoration and an end to this story. We’ve ached for something new.

I’m telling you now. Something is ending. God is doing something new.

In Dan Allender’s book To Be Told: God Invites You to Coauthor Your Future he writes about how our culture fails to celebrate endings. He talks about the literary idea of denouement.

“Denouement is an ending that serves as a prelude for a new beginning; there is always a next turn in the road. A new story begins the moment an old one ends. But a denouement is a respite that calls us to stop the journey for a brief interlude–to eat, drink, sing, dance, and tell our story to others…One of our greatest failures in our busy, driven culture is that we don’t celebrate the temporary untying of a complex narrative…We don’t allow endings to be noted, let alone celebrated. Therefore we never let denouement to invigorate the upward movement of a new story. And we will only love our story to the degree that we see the glory that seeps through our most significant shattering. To see that glory, we must enter into and read our tragedies with confidence they will end better than we ever could imagine.”

There is a new story. The words are hard fought. My brain is still broken in many ways, but I hear the call to return and remember. He’s binding up the brokenness and healing the wounds. It’s a “wide and wild inheritance.” Thank you for your great love and patience in this time of denouement. Glory is seeping through every suffering. I’d rather go blind than look away.

(Take a few minutes to rest right now. Be still and know. My childhood friend, John Albert Thomas, is a solo piano composer. His songs are the peaceful background of many of my days.)

 

 

You might also like

I Am No Victim

by

Define yourselfI am having trouble finding words. Following each new trauma it’s taking me longer to recover, and I see pieces of myself disappear completely. There is scar tissue in my heart and mind where a rejuvenation simply may not take place. I am frustrated. I wish I didn’t have to keep writing, but I must try now more than ever.

I’m a month post-op from two shunt surgeries at Hershey Medical Center in Pennsylvania. Something is wrong again. The lumbar peritoneal shunt is hurting more than any brain pressure relief it could bring. My dad will drive me back to Hershey Sunday for a Monday surgery, my 4th since March. I’m broken. I won’t try to describe my pain anymore. It refuses to be named. I’m afraid for my life.

Months ago I walked into Delaney’s room and heard a hauntingly beautiful song by Kristene Demarco playing on her little bluetooth speaker. It’s become my anthem.

I’m desperate. I’m angry. I’m sad. I’m confused. I’m misunderstood. I’m lonely. I’m scared. I’m tired. Oh so tired. When these feelings try to define me I play the truth. Over and over again.

I am no victim. I am who He says I am. He is who He says He is. I’m defined by all His promises. Shaped by every word He says. 

In my suffering I am tested. I hear Him asking me, “Who do You say that I am?”

You are God. More than able, Ever Faithful. Always good.

There are beautiful stories to tell. He’s put His arms around me and called me Beloved. This would be enough. Dayenu. This is enough. But His Grace is greater.

I began blogging in 2010 on Team Danica because so many of you wanted to know how to pray, how to give and how to carry our hearts. It was a way for me to share information when I had no strength to share the emotions over and over on a personal level. I am in this same place right now.

God is making a way for our family. I will have surgery again next week. Somehow in the following weeks He will carry us to Arizona, a place where I feel the most well and will have the best chance to heal and live. Dan will take some time off work to care for me. There are a hundred details that are unknown. If there was ever a stepping out in faith this is it.

Thank you for praying and for loving. Your steadfast friendship shines truth too.

This song is on repeat as I fall asleep every night. This album is playing over and over again in our home, on my phone, on my Kindle and in my car. Find it. Download it. Stream it. Buy an old school CD. Know for sure. Whatever hard you are facing. You are no victim. You are who He says you are, and He is who He says He is. Believe it. Rest in it tonight. You are beloved.

Our Hope Remains.

You might also like

Feeling Forsaken. Knowing I’m Not. Moving West

by

“I have called to God and heard no answer,
I have seen the thick curtain drop, and sunlight die;
My voice has echoed back, a foolish voice,
The prayer restored intact to its silly source.
I have walked in darkness, He hung in it.
In all of my mines of night, He was there first;
In whatever dead tunnel I am lost, He finds me.
My God, my God, why hast thou forsaken me?
From His perfect darkness a voice says, I have not.”–Chad Walsh

Light

Two weeks ago I sat on the North Carolina coast with the sun in my face, the clean ocean air filling my head and my heart and my bare feet grounded in the sand. I was without pain. It was the perfect and oh so rare cocktail of environment, weather and wellness gifted to me a few days during our family vacation. I didn’t take a minute for granted. I scribbled in my journal all the beautiful things that flow from the kind of hope born in pure light. Mary Oliver’s words echoed in the ebb and flow of the waves, “What is it you plan to do with your one wild and precious life?”  

This is day seven of unspeakable suffering I don’t understand.

In the fall of 2013 I had my very first lumbar peritoneal shunt placed after several years of struggling with Intracranial Hypertension. Of all my pain, the brain pressure puts me in bed, holding my head, weeping and even wanting to die. I lose vision in my right eye and hearing in my right ear. On the worst days I am completely debilitated. I knew that shunts, both lumbar and ventricle, are not engineered well and are especially problematic in EDS patients, but I was desperate. The first LP shunt clogged quickly, and I had a revision in February, 2014.  A week after surgery I flew to Arizona to heal. I arrived being pushed in a wheelchair with a large wound just under my ribs where the device was replaced and incisions in my side and back where the tubing snaked around into my spinal cord. I left having hiked over a mile the last day there. It was the most well I’d felt since 2007.

Since, I’ve had another LP shunt revision and a VP shunt placed in my brain that needed revised last April. The brutal Ohio months of January and February were always a catalyst for failure. Escaping to Tucson became a way for me to get relief. Because of planning and executing my first Option EDS – the retreat in May I didn’t plan on traveling west this year, but my tell-tale symptoms of a clogged device escalated. Delaney and I took a last minute, emergency trip in February. My relief was instant. On the flight home we both wept.

The following weeks of drastic weather changes battered my brain. I was more scared than I’ve ever been. My vascular neurosurgeon moved from Virginia to Pennsylvania since my revision last spring. I reached out, and he had me come immediately. March 22nd Dan and I drove five hours to Hershey Medical Center. I was admitted through the ER, and he revised my shunt late that night. The device and tubing were clogged. The next morning Dan asked him how long he thought this one would last. He said maybe a year at best and next time he would have to place a shunt on the left side of my brain instead of the right. It’s too much cutting.  It’s stenosis in the arteries and ventricles. It’s trauma that cannot be healed anymore.  I’ve had six shunts in four years, and there is no real fix in sight.

With thirty staples in my head I returned to Tucson with my dear friend Janet. It was another unplanned trip. I spent my time there seriously considering what I’ve known I need to do to save my life. I looked at schools for the girls. I looked at real estate. I spent the few days imagining what moving there would look like.

Several weeks later, in early May, my family and I and my parents traveled to Tucson together. The girls visited their possible schools and shadowed students that may become their friends. We looked at short and long term housing options. We spent time exploring what we’ve known we have to do to save my life. We put an application in on an apartment even though we felt the multi-family environment may be unstable for my mast cell disorder. We took a step in faith.

The day before we left I received my insurance EOB for my most recent shunt revision surgery at Hershey. The cost is shocking. $145,566.16.

We can’t afford to move. We can’t afford not to.

We flew back into Cleveland on Sunday afternoon. A pressure system was bringing rain. I literally walked off the plane to an escalating headache. I cried. I sat on the baggage carousel and cried.

We can’t afford to move.  We can’t afford not to

In all the preparation for the retreat I also began to ready our home for sale. It’s complicated because this house is in my parent’s name. It was…is a miracle, and we are deeply rooted in these literal four walls. Dan began sending his resume to job opportunities in Tucson. I wanted to ask you all to pray, but I didn’t want to distract from the important work of the retreat. Dan had a Skype interview the Monday of the retreat week. It didn’t go well. He was distraught. I was not here. He became afraid. The girls were absorbing the weight of his emotions. I was experiencing the untold beauty of a calling fulfilled. It was exhausting and exhilarating. I flew home to a storm of doubt and backtracking. The expectation of a plan to relocate so quickly was not easy for Dan. He is a man of faithful doing. He has not hustled or sold himself even once during the last ten years. He’s sacrificed any personal ambition to care for our family. I did not fully realize the kind of inadequacy he was feeling about a job search. The girls and I met and prayed. We had a family meeting and removed the “deadline” date of the beginning of school in early August. I watched my husband reappear just a little. We leaned into our family beach vacation. While sitting on the beach I wrote an email canceling our lease which was to begin June 15th.

We flew back into Cleveland in pouring rain. My head felt like it would explode. It’s been hurting since. The past week has been a testing of everything I’ve said about not cutting my brain open again. I’ve tried every possible treatment. I went to the ER Saturday and asked for IV meds which only took an edge off the constant debilitating pressure. I’ve hid in my cool, dark room and cried out to my God. I’ve been in touch with my neurosurgeon who suggests a large volume lumbar puncture to remove fluid and provide some relief and also give information about a shunt failure. I would have to travel to Pennsylvania for this. I believe I am not supposed to have another surgery.

I received an email from the realtor in Tucson last night. The community we would love to live in is releasing their first lots. There is an opportunity to build a small home with a suite where family could stay or we could host EDS warriors who need to know there is a place they could heal and feel more well. This has been a dream of mine since I began traveling to Tucson. The retreat only reinforced this desire to minister to others in such an intimate and life changing way. In my desperation I wanted to delete the email. I couldn’t even get out of bed. How in the world would we ever make it to Tucson now?

I had a Toradol injection yesterday and began a medication that has helped in the past when my shunt has failed. I am trying to write this clunky post while I can.

My life doesn’t seem wild or precious at all. The long hours curled up in the dark feel like wasted time. What are my days worth?

I spent time with a wise counselor this morning. She has walked every step of this journey with my family and I for so many years. She’s seen the medical costs that could have bought a half dozen homes. She’s seen me heal and even blossom on trips to Arizona and regress when I return. She knows my complete devotion to and admiration for the man who has loved and served my family and I through a decade of doing the faithful and sacrificial next thing. She championed the purpose that grew from my pain and became Option EDS – the retreat. She understands this particular hurt is the one kind of suffering that brings me to the utter end of myself and makes me want to disappear. She believes I am supposed to stay. Today she reminded me of what’s been possible, because we’ve been vulnerable enough to admit we could never do this on our own and then humbly ASKED. This has been no easy thing. Especially for my Dan.

You all have been invested in our story from the very first blog post on Team Danica. You’ve prayed and encouraged and supported and loved us into miracles. This is big. We are ever grateful. I cannot even begin to imagine how God will do this new thing. But I’m asking you to pray. Plead with us for a way in the wilderness. I want the story to have some kind of restoration, celebration, land of milk and honey resolution here in this life.  It may not come.  But the changing of our hearts day by day and the healing of our eyes to really see Him and know Him is preparation for the eventual total healing of my body and our souls forever and ever.  This is Grace.  Our Hope is built on nothing less.

In my crying out today I echo the voice of the one who endured the ultimate suffering for me. We share the same Father who has a perfect plan for our good and His glory.

I feel forsaken. I am not.

I believe. Help my unbelief.

“For from Him and through Him and for Him are all things. To Him be the glory forever! Amen.”–Romans 11:36

You might also like

Farther Along. Please Pray for Us

by

orange

When I leave a decided silence here I am even more reluctant to return. After all, this was a place to tell a story, and I became more weary of it than you ever could have, and I mostly quit. The narrative is in between these words. It’s in the painful place where I wrestle with my faith while my hip is screaming out of joint. I’ve been reading N.D. Wilson again.  And there’s this:

“Do not resent your place in the story. Do not imagine yourself elsewhere. Do not close your eyes and picture a world without thorns, without shadows, without hawks. Change this world. Use your body like a tool meant to be used up, discarded, and replaced. Better every life you touch. We will reach the final chapter. When we have eyes that can stare into the sun, eyes that only squint for the Shenikah, then we will see laughing children pulling cobras by their tails, and hawks and rabbits playing tag.” 

My in-laws visited this past weekend. They reminded me of a song I know because I love Josh Garrels, but I should know because I loved old bluegrass Gospel music before it was considered relevant or cool. How did I miss this poetry of God’s sovereignty?

Tonight I sit in early evening light filtered through virgin orange blossoms, and I ache. I’ve never been one to live well in the juxtaposition of the Grace I’ve been given held up to those who have never tasted or seen.

He is God.  I am not.  Oh, these lyrics.

Farther along we’ll know all about it
Farther along we’ll understand why
So cheer up my brothers, live in the sunshine
We’ll understand this, all by and by

Tempted and tried, I wondered why
The good man dies, the bad man thrives
And Jesus cries because he loves em’ both
We’re all cast-aways in need of rope
Hangin’ on by the last threads of our hope
In a house of mirrors full of smoke
Confusing illusions I’ve seen

Where did I go wrong, I sang along
To every chorus of the song
That the devil wrote
like a piper at the gate
Leading mice and men down to their fate
But some will courageously escape
The seductive voice with a heart of faith
While walkin’ the line back home

There’s much more to life than we’ve been told
It’s full of beauty that will unfold
And shine like you struck gold my wayward son
That deadweight burden weighs a ton
Go down to the river and let it run
And wash away all the things you’ve done
Forgiveness, alright

Farther along we’ll know all about it
Farther along we’ll understand why
So cheer up my brothers, live in the sunshine
We’ll understand this, all by and by

But still I get hard pressed on every side
Between the rock and a compromise
Like truth and a pack of lies fightin’ for my soul
And I’ve got no place left go
Cause I got changed by what I’ve been shown
There’s more glory than the world has known
Keeps me ramblin’ on

Skipping like a calf loosed from its stall
I’m free to love once and for all
And even when I fall I’ll get back up
For the joy that overflows my cup
Heaven filled me with more than enough
Broke down my levees and my bluffs
Let the flood wash me

And one day when the sky rolls back on us
Some rejoice and the others fuss
Cause every knee must bow and tongue confess
The Son of God is forever blessed
His is the Kingdom, and we’re the guests
So put your voice up to the test
Sing Lord, come soon

Farther along we’ll know all about it
Farther along we’ll understand why
So cheer up my brothers, live in the sunshine
We’ll understand this, all by and by

Forgive me for thinking my family and I could live this next chapter without your specific prayers. I never wanted to distract from the work God gave me in Option EDS – the retreat or the story I was telling over there. But I know better than to think my big God can only do one thing at a time with one heart and one life. I am asking you now. If you’ve ever prayed for us, please lift us up again tonight.

Dan. Monica. Delaney. Danica.

He knows. The Spirit groans. Farther along we will understand. Our Hope remains.

You might also like

Dear God, (About Laney)

by

LaneyLookAZ

“Be alert, be present. I’m about to do something brand-new. It’s bursting out! Don’t you see it? There it is! I’m making a road through the desert, rivers in the badlands.”–Isaiah 43:19

Dear God,

I found a letter Delaney wrote to You. It was a gift, because all mamas wonder where their children’s hearts truly lie. I’m loving my girl in a more desperate way lately. Each day is one less I have with her across the hall. I question if I’ve loved her in the right ways, and if I’ve pointed her to You before anything else.

I’ve sat in this tiny corner of the world for so long now. She’s seen my faith in private ways. My open Bible in the morning. Music streaming about You. My knees on the floor at the bench where I go for the crying kind of praying. She’s seen my service to others through piles of letters waiting to be mailed or care packages sitting out until I get them just right. She’s listened to me take phone calls late at night from people I’ve never met, sharing our story, helping them take the next brave step in their own. She sees my eyes light up when I talk about the Option EDS retreat. She’s seen meals show up on days I could not feed her. She’s seen checks come in the mail from all over the world and understood they were Your provision for us through other’s hands and hearts. We haven’t been in church regularly. She doesn’t have the muscle memory of every Sunday worship and preaching. Instead we mostly gather around the living room and have “home church.” She says it’s one of the most special things about our family. I hope she knows the Body of Christ is as big as we’ve been loved, but the local gathering of believers is important and necessary too. I’ve failed her there. I’m sorry.

You’ve cared for her all those times I’ve packed my suitcase and went away. I always left her a letter to find. Surgery after surgery I wrote her as if I might not come back. I never wanted her to guess about how much I love her or how much peace she could find in You if it was time for me to go. You’ve given her a way of moving forward with joy even when things were so painfully stuck here at home. She’s seen me in unspeakable pain. She’s watched her sister suffer. She’s felt her daddy’s breaking heart for it all. And still she gets up and does life with a fierce expectation of good.

Lately I’ve felt the world pressing in on her. I’ve seen her scratch her head about people who call themselves by Your name but do and say things that look and feel so completely different than Jesus did. I’ve had to talk about nuclear war, sexual harassment and abuse, divorce and drugs. I don’t know if I’m getting any of it right. She is thinking about her future. I haven’t raised her to be looking for a husband or dreaming of having babies at fifteen. She knows my greatest calling has been in my role as a wife and a mother. I think this is enough. You’ve given her gifts. I tell her over and over again if she seeks You first all these things will be added unto her.

A few weeks ago I felt Delaney’s spirit hurting. Looking through her eyes I could see how small this cold and snowy street in Ohio seems. I was in so much pain. I was paralyzed with the fear of my brain shunt failing again. You made the way for us to travel to Arizona together. Just my girl and I. She fell in love with the desert. She could scarcely believe how happy and well I was when we were there. We spent every moment together, and it seemed to fill in empty spaces of time we thought we’d lost.

She talks about all this in the letter she wrote You. Moving our entire lives across the United States feels too scary. Four times I’ve left Ohio in February to find relief and heal. Four times I’ve come home knowing I could have a more well life in that place. But I was afraid. She believes us staying here. Me hurting like I am today. Me risking another invasive brain surgery. Me not being able to lift my head some days. Me biting my cheeks to try and hide the suffering. That it’s not the role of a martyr so she, Dan and Danica can have the better choice here. She believes what Dan has always said. She is only as well as I am. Why would I not take the risk to have the best life?

God, It’s true. I’m scared.

On our last hike through the saguaros we built an Ebenezer. “Thus far the Lord has helped us.” I believe You direct our paths through providence and provision. I know for sure with You all things are possible. I want Delaney to see You make the way in the wilderness. I want her to see You doing a new thing.

Give us the faith. Show us the way.

From You. Through You. To You. Glory forever.

Amen

Ebenezer LaneyandIAZ SaguaroShadows

You might also like

A Thousand Things. On Expecting Miracles and an Open Letter to Each of You

by

expect miracles

For all the promises of God find their ‘Yes’ in Him. That is why it is through Him that we utter our Amen to God for His glory.”–II Corinithians 1:20 ESV

Dear Ones,

To every one of you who have touched our lives in prayer, cards, meals, visits, gifts and donations and shared our story with others:

Remembrance is a powerful catalyst for gratitude and hope. After my November spinal surgery I suffered a frightening loss of memory. Besides a few blips here and there I cannot tell you what happened to me beginning in the recovery room until almost a month later. This time is lost. It is why I’ve not written here. I’ve experienced none of the usual post operative trauma, grief and sadness. I’ve not cried. I’ve not wrestled with my slow recovery. This has been a peculiar blessing. But, I’m trying to piece it together now, because it matters deeply. God was doing something so big. I can’t help but think He wanted me to step completely outside my mind for awhile so when I walked back through the door I could see the impossible made possible for exactly what it is…A MIRACLE.

People disagree about this miracle stuff. A baby born of a virgin, definitely. Water into wine at a wedding, sure. A few loaves and fishes feeding thousands of people, of course. But is God working supernatural wonders here and now?

If I’d been shown ten years ago the path God was asking us to walk would I have obeyed? Even now I see only in part what He has been doing in our hearts and lives and the hearts and lives of people around us. One thing I know for sure. We have been active participants in real miracles.

Miracle. The word holds so much power. I used to hesitate to use it much because it’s very definition implies the occurence is rare, and it should always point to Divine intervention. It’s often thrown about in careless ways that dull it’s shiny meaning. Still, I’ve read over and over the accounts in the Bible, and I know God is doing these same kinds of amazing things today. The focus of Christ’s miracles during His earthly ministry was always faith and always the heart. Even when bodies were healed, water was turned into wine and waves were made to cease He was always pointing to spirit and soul issues. He was always showing His power to bring God the glory.

Are Danica’s little ribs fused in her neck making her brain and spinal cord stable while freeing her from all pain less a miracle because God used human ingenuity and hands to accomplish the result?

“When Christ died he purchased for you the ‘Yes’ to all God’s promises, and that includes the promise to use His sovereign power to govern all the inexplicable, maddening detours and delays of your life for wise and loving purposes. He is doing a thousand things for you and for His glory in your disappointed plans.”–John Piper

There have been dark days of doubt in this Gauntlet, but deep down I’ve always known every single detail of our narrative was more about Him than us. We’ve pleaded with God for a break in the suffering. We’ve begged for a time of peace and restoration and an end to this story. We’ve ached for something new.

I’m telling you now. Something is ending. God is doing something new.

In Dan Allender’s book “To Be Told: God Invites You to Coauthor Your Future” he writes about how our culture fails to celebrate endings. He talks about the literary idea of “denouement.”

“Denouement is an ending that serves as a prelude for a new beginning; there is always a next turn in the road. A new story begins the moment an old one ends. But a denouement is a respite that calls us to stop the journey for a brief interlude–to eat, drink, sing, dance, and tell our story to others…One of our greatest failures in our busy, driven culture is that we don’t celebrate the temporary untying of a complex narrative…We don’t allow endings to be noted, let alone celebrated. Therefore we never let denouement to invigorate the upward movement of a new story. And we will only love our story to the degree that we see the glory that seeps through our most significant shattering. To see that glory, we must enter into and read our tragedies with confidence they will end better than we ever could imagine.”

A thousand things. God was always saying, “Yes.” He is still saying, “Yes!”

Our gratitude for ALL your love is rippling now. It flows from us. We eagerly expect the new things God has planned for our family.

When Danica first became so ill we closed every note and email with a Willa Cather quote, “Where there is great love there are always miracles.” 

Expect miracles. I’ve see miracles. We’ve seen miracles. By Him. Through Him. To Him. All glory. Forever and ever. Amen.

(This song by Christa Wells is such an important part of our life soundtrack. So many times little Danica would ask me to play it. We would cry. Could God use all this ‘exquisite pain’ to do a thousand things?)

You might also like

1 2 3 14