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

I Am No Victim

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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.

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Feeling Forsaken. Knowing I’m Not. Moving West

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“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

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Farther Along. Please Pray for Us

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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.

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Dear God, (About Laney)

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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

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

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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?)

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If Aslan gave me my choice…

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FamilyCorolla
…I would choose no other life than the life I have had.”–C.S. Lewis, The Last Battle

Facebook memories have become more an Ebenezer than I ever could have imagined.

I’m curled up on my heating pad. I haven’t been able to keep any food in my stomach. I feel frightfully dehydrated. I’m weak, and my very heart hurts. Things are a blur since my surgery two weeks ago in Maryland. I’m wandering through the hours and days trying to make sense of the Versed laced memories. There are full days missing. There are conversations I’m sure I had, gifts received and messages answered I just can’t piece together. All this adds to the grief of lost living. It always feels the same. The weeks of preparation to leave, the time gone and the return to weeks of recovery feel like wasted time. God, what are You doing with this time?

Today my memories pop up back to 2010. There is a photo of Danica sitting in her wheelchair and Minerva brace playing trains on the table. What a miracle her second surgery was. Oh how grateful we were to be back in our own home, if only for a little while. A year later the posts are blog updates from Dan and my friend, Angie. I was in the hospital in Maryland on Thanksgiving Day after my first brain decompression and fusion. Five years ago there are photos of a Thanksgiving meal delivered from Feast for Families to our new home. This house has been another miracle we couldn’t have written into our story. He did this. Three years ago I was gifted the most meaningful retreat of my life at Laity Lodge in the Texas Hill Country. God continues to thresh out harvest from seeds planted there. And last year, there is a photo of us around the table. I’m wearing my Aspen collar, recovering from my huge fusion, and we were clinging to one another looking towards Baltimore and Danica’s surgery.

These memories hurt in the way rubbing up against hard things do. They also call to remembrance the sustaining tune of Grace gifted in measure year after year.

There are new stories to tell about the gratitude we live today. They will come in time. Our holidays look sad from outside, but our expectations are whittled down past the tinsel now. We know too much to ever forget. They begin at the cradle and point to the cross.

If we could look back over a decade and make a different life, we would not. Streams of mercy, never ceasing. Mount of redeeming love. Hither by His help we’ve come. He’s rescued us from danger and interposed His precious blood. Our wandering hearts are sealed and bound forever to His courts of love.

Forever.
Come Thou Fount of every blessing.
Forever.
Our Hope Remains.

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Fellowship of Love. Suffering as a Footnote. A New Story

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Broken
“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.”

My eyes were filled with hot tears welling over, streaming down my face and neck as I collapsed into bed last night. Dan held my hand. We’d come from the calling hours of a friend. Earle was more than the father of a dear friend. He was a man who loved our family faithfully with his ability to give. For years this humble man who kept his checkbook down to the penny and budgeted every part of his simple life would write a check for $25.00, wrap it in a piece of white paper and mail in a plain envelope to our house. There was no note. The sacrifice and the surety of this love was one of the ways God reminded us month after month that He is for us. Our families became entwined through relationship. I loved his daughter, Sharon, fiercely during a time when she was lost and very alone. Her life has become a trophy of Grace and redemption. He and his wife, Pat, never forgot my willingness to open my heart and our home to her when she was holding them at arm’s length. This woman has become my own fierce friend. She has loved me back in a hundred ways. Isn’t this how it’s meant to be? The giving and receiving become the same thing.

I checked my phone before trying to fall asleep and found an email from my sister-in-law with the obituary of her dear dad. He was another man I loved. He and his wife, Jackie, opened their hearts and home to Dan and I early in our marriage. We celebrated holidays with them and Dan’s brother, Steve, and Amy in Bay Village. We celebrated birthdays in Rockville when we lived in Maryland. And last spring, when I was in Charlottesville for my first VP shunt placement, I spent several beautiful days with them at their new home in Virginia. Frank had just received his liver cancer diagnosis, and I sat with their family on the deck in the sunshine as they began to talk about the tough things he was facing. I saw him in April this year when I returned to UVA for my shunt revision. I asked my dad to drive me to Culpeper to visit them. He was so thin, and I could feel his tired. My heart has keenly carried my Amy’s and mama Jackie’s hearts as things became more grim. I admire Frank’s brave desire to leave when it was time to go and the great love of his family to release him peacefully. Amy called me early this week to tell me she was working on her dad’s remembrance and her mom wanted our family to receive any donations in honor of Frank. I was struck again with the way love always come full circle when it’s given and received with no expectations. It’s a flow of opening our joy and pain to one another, promising we will be there by showing up and trusting someone will always show up for us too.

I cried again. I wondered out loud to my husband about the things our lives are made of when we have to boil them down to three paragraphs. We are all terminal. Our days were written when there were none of them. What will my lines say?

I’m facing my brokenness head on this week. I am in continuous pain from the tethered cord. My legs are like jelly. I have a constant headache. I’m sleeping less and less. I feel like every movement is too hard. I was back to the hospital early yesterday for more adrenal testing. This afternoon I have a biopsy of my right thyroid. Thursday I have chemo all day. Sunday I will celebrate 42 years of life. Monday I will say goodbye to my girls and my puppy and leave for Maryland for my twenty-sixth surgery. I’m broken.

I’ve been quiet of late about all this pain. I’m so weary of the question, “Will this be your LAST surgery?” I’ve wanted to be able to tell a miraculous ending to this story. I’ve begged God for something new. I’ve been slowly digging back into Ann Voskamp’s book The Broken Way. I read it last year while sitting vigil beside my Danica’s bed at Johns Hopkins. There was so much I couldn’t swallow then. The smoke of suffering was too thick.

Yesterday while sitting in the infusion room at Mercy giving blood, being injected with steroids, waiting and giving more blood just to wait again I read these words,

The miracle happens in the breaking…
How have I tried to avoid suffering, mask my suffering, terminate all suffering instead of sharing it, letting others participate in my own, choosing to stand with others in theirs, stay with their suffering and break the heart open and let people into all of my own–so that suffering might be shaped into an intimacy that transcends and transforms the suffering? The heart has a far greater capacity for pain that can even be imagined–because it can love far greater than ever imagined.”

Dear ones, the love we’ve received and the communion of suffering is gift. I’ve been unable to ask louder than a whisper for help with this surgery, but we’ve laid it down at the feet of our God who has scandalously provided every need. Dayenu. Enough. MORE than enough. Once again we are surprised somehow by His plan to care for every need and meet us with grace so we will be equipped for the next hard thing. He gets the glory.

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

Thank you for coming close. Thank you for once again sitting with us in the burn. Thank you for giving and receiving. Our Hope remains.

(Oh how I love Christa’s song art.)

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A Felt Risk. Good Gifts. Paying Attention

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Fall Bookcase
“Did you ever imagine that what we call ‘vulnerability’ might just be the key to ongoing growth? In my experience, healthily vulnerable people use every occasion to expand, change, and grow. Yet it is a risky position to live undefended, in a kind of constant openness to the other—because it means others could sometimes actually wound us. Indeed, vulnera comes from the Latin for ‘to wound.’ But only if we take this risk do we also allow the opposite possibility: the other might also gift us, free us, and even love us. But it is a felt risk every time. Every time.”–Richard Rohr, The Divine Dance

I’m sitting in my favorite place in the world. It’s not the beach or the Shenandoah Valley. It’s not the Tucson mountains. It’s my worn “nest” chair in the corner of our little ranch in Uniontown, Ohio. It’s chilly today. I have the windows cracked and the screen is still on the open front door. I’m listening closely for the change in the bird songs. The cicadas are gone. The breeze in the leaves has a different tone as if they are saying a sweet farewell to one another before they let go. Five years ago God gave this home to us. Do you remember the miracle? So many of you prayed. It’s the longest Dan and I have ever lived in one place together. There is not a day I don’t utter gratitude for this sacred space. I follow the light from east to west. I know which plants will bloom first and where the cardinals will make their nests in the spring. I cherish the sound of the rain on the chimney flue. I love the old Magic Chef stove that bakes more evenly than any oven I’ve ever had before even though it doesn’t match our other appliances. The seasons change in the farmland around us. The corn is mostly harvested now and the fields feed the geese and birds beginning their journey’s south. Great is His faithfulness. Good gifts. I’m paying attention.

It’s almost time for the girls to get home from school. A dear friend began bringing them every day she can for me. It’s out of her way and takes a half an hour off her afternoon, but she does this thing that saves me anxiety and spoons. It protects my spine and keeps my children and others safe on the days I truly shouldn’t be driving. Last week she grabbed us Panera for dinner on a day we would have eaten cereal. Good Gifts. I’m paying attention.

Lying beside me on the side table is beautiful hand designed letter from a friend who has followed our story since we were on a book launch together. She and I finally met in real life at a retreat this spring. Their family has been praying for us. Over the past decade of hard I thought I’d seen specific kindness in almost every form. Their love is fresh. Dan has been working any overtime he can to help with our always challenging financial situation. This friend’s husband is a physical therapist. He committed to taking at least one extra client a week in solidarity with Dan. They have been sending what he makes to us to help with our bills. Good gifts. I’m paying attention.

I scroll through the texts on my phone to find the one I received Friday from the same friend who flew from Denver to Maryland to drive me around to my most recent appointments. It says, “Booked November 13-17th. Woohoo!” I was confused. I thought maybe she meant their condo at Winter Park. No, she booked plane tickets to come be with me in the hotel after my surgery. I’ve been most frantic about being alone after my operation. Dan has to leave Sunday, the 12th, to return home to work. My surgery instructions clearly say I need a caregiver four weeks post-op. The first few days after discharge are rough because of pain and wound care. I was worried about coordinating rides to my appointment where I’ll be cleared to come home and to the airport, my desired mode of transportation back to Ohio, while trying to keep my spine straight and juggle my things. She will be there to help me. This friend who just fought Lymphoma, who works full time, who has young children with busy lives is the answer to my prayer, “Please, God, I don’t want to do this alone.” The sacrifice is not only hers but her husband’s as well. He will step in once again and hold the fort down while she shows up for me. Good gifts. I’m paying attention.

I spent a few weeks after finding out about my re-tethered spinal cord and needed surgery in grief and shut myself down emotionally. I needed to move through Danica’s sadness about having to adopt Rolo out to a new family and throw myself into making her tenth birthday a kind of redemption for this huge loss I felt personally responsible for. The birthday surprise would not have been possible without the great love of a friend and her daughter who took Danica and I to Columbus for an overnight American Girl celebration. I pushed my body to make a long ago planned trip to Jacksonville, Florida with my family to attend my little sister’s wedding. It was good, but I paid dearly. I had a kind of breakdown last week when I returned. I didn’t move from the bed Tuesday. I had a video session with my counselor, and everything I’d been holding in came rushing out. I hadn’t shared my fear, my sadness or my shame with anyone. Another surgery is incredibly painful for the people I love. I especially try to protect Dan and the girls from how close I am at times to just quitting this fight. My support system has shifted. People I relied on previously have been called away to care for others in their lives. I don’t want to lay even a bit of this burden on their already full plates. I most of all didn’t want to share specifics about the money we need for this necessary surgery to even happen. I want to give everything back tenfold and never receive again. I want my husband to never feel the guilt he experiences when someone else meets our needs, because he has done all he can, and it feels like it’s not enough.

The kind of wound that comes from being vulnerable hurts even when good blossoms from it. My wise counselor encouraged me to once again take the risk to be loved. She reminded me how continuing to tell our story here, allowing provision to come and then paying attention and telling about the gifts, is the place where we change and grow and invite others into this exquisite dance of caring for one another. She reminded me of my ministry of prayer and #pentopaper and beautiful dream of the EDS beach retreat being realized. She reminded me I am giving too.

The girls had off school last Friday. Delaney and I were listening to Adele. She was singing passionately about “Turning Tables.” Laney said she couldn’t imagine a relationship making her feel that desperate or sad. This led into a conversation about the great risk of giving your heart and mind and body to another human being with very little control over their response and their ultimate decision day after day to stay or turn around and leave you. Knowing this we can decide to protect ourselves by never risking, but we would miss the gift, the freedom and the love possible because of vulnerability.

As we talked I realized the writing I do here is a long and meaningful relationship with those of you who’ve invested in us. Shutting down now or becoming informational instead of baring my heart, because it feels too risky, is a little like walking away from the great love of God through you.

I’m ever humbled. I’m opening again to allow the hurt and the healing of this next surgery to expand, change and grow my family and I. I’m stepping out hoping someone shows up and just maybe they will receive a gift through our fleshy bare and trusting souls. Good gifts. I’m paying attention.

(If you would like to donate towards my surgery deposit and the two weeks of hotels in Maryland you can give here and through the gofundme link on the right of this blog. We trust and wait and suffer gratitude.)

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Surgery Again. The Complicated and Necessary Right to Suffer

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SafetyPins
“My feelings of pain and guilt for failing not to suffer became more unbearable. The physical pain seemed almost easy in comparison.”–Lucy Grealy, Autobiography of a Face

I’m sitting at chemo today. It hurts.

My spinal cord is re-tethered. It hurts.

I want the pain and guilt of being sick to stop even more than the actual physical suffering.

There is much to share about my trip to DC. Some hard. Some pure Grace.

I need spinal surgery again. It’s scheduled for Wednesday, November 8th. It will require 3-4 days in the hospital and 7-10 days in the area after discharge before I’m released in a post op appointment. It seems as impossible now as the first time. I have to allow myself to sit here for a minute and acknowledge how this feels to me, because it’s happening to me. I won’t stay in this place. I will move forward to all the planning and logistics and finances and caring for other’s emotions surrounding it. For now I will endure this chemo and the awful ache that follows. I will crawl into bed and cry until the tears run dry. I will wrestle with God through the night. Tomorrow I will rise and begin to do what must be done. He will make a way. I will write about it. I will tell about it. He will get the glory, but today I believe He understands my complicated and necessary right to suffer.

“As a father has compassion on his children, so the Lord has compassion on those who fear Him; for He knows how we are formed, He remembers that we are dust.”–Psalm 103:13-14

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The Thorn. Keep Bleeding. Turn it into Love

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Gracelacedcover

The cursor blinks. I edit every thought before it can escape through my fingers. I’m back to a place of intense and unrelenting physical pain that clouds how I see myself, my family, my community and my faith. I’m at a point where talking about my suffering in any forum, even my close personal relationships, seems self indulgent. This thorn is not going to be removed. Be quiet. Try and make your life about something else. Anything else. 

Today I’m in bed with deep heat along my thoracic spine. I spent the first hours of my day making phone calls to follow up on recent adrenal testing I had at the hospital and pre-registering for one of several kinds of MRIs I need before my appointment next Thursday with my neurosurgeon in Maryland.  I wrote several cards to sister warriors recovering from their own surgeries. I was back and forth to the bathroom. I had a serious mast cell attack over the weekend leaving me more ill than usual. I cannot seem to recover. I will get dressed soon and drive to the girl’s school to deliver snacks for the golf team’s away match and pick up Danica. This will take any spoons I have left.

Yesterday I made a rash decision to take my Danica’s Rolo to boarding for a few days and nights. I spent Sunday in frantic pain, and I began to count the number of times I was bending to help put him on the leash or take it off or put him in his crate and get him out or grab him when he was chewing something he shouldn’t or was playfully chasing my little Twixie. I was doing more than before because Dan was working overtime again and Danica was still recovering from her fall last week. Her spine was hurting too. I woke with desperation. I had to know if being still could improve the suffering of neck spasms and the scary symptoms of dystonia in my limbs, neuropathy and loss of feeling in my hands and feet. Most of all I needed a break. The guilt overwhelmed me.

“What good is guilt? We ask. We like the sound of the question. It puts a crude finger on a heartbeat in us that won’t stop racing, a pulse broken in sympathy. It makes us talk. It makes us talk about ourselves. It makes us confess. We want to purge something even confession won’t justify…”–James Agee

Someone wise once told me guilt is not an emotion. You either are or you aren’t.  It is not my fault I am so broken and ill. But I did promise my daughter a dog if she would hang on those long days and nights following her brain and spine surgery. I let her draw pictures and dream of names and study breeds while she wore her brace and sat still. I took the money from my parents, and we drove her to meet this little dog who we all now love but wonder if we can keep. I am guilty of saying “yes” to something I should have known may be the literal straw that would once again break my back. And now I face the forever guilt of perhaps needing to give him away to another family better suited for his care. It is one more thing my children will have sacrificed or lost because of my disability. This is an overriding theme in their narrative. I’m missing for large chunks of time, either away for surgery, in bed recovering, skipping school functions, concerts and awards programs to avoid mast cell attacks, absent from volunteering in their classroom or for the PTF and building relationships with other families because I cannot commit to anything. I’m not guilty, but I’m confessing my heart breaks every single time my hard robs something from their good.

Gracelaced4

I’ve long loved the artwork and words of Ruth Chou Simons of Gracelaced. I was gifted a beautiful print that hangs framed in our bathroom. My 2017 calendar is from her stunning collection of desert watercolors, and I frequently mail her lovely notecards. Her beautiful book by the same name was delivered last week. Each page is a new gift. I am working through it slowly. I’ve stayed in the third chapter titled “Sufficient” for almost a week now. I’ve sat with the image of my thorn in the flesh, the one God has not chosen to remove. Ruth writes:

“We miss the lesson when we pick at the thorn…nurse it…bemoan it…curse it. The enemy would have us so blinded by the pain of the thorn that we can’t see the beauty of the rose garden. I’ve been there so many times…so consumed by the discomfort that won’t go away that I can’t experience what fragrance of grace lies just ahead. Look past the thorn to how Christ is enough in the midst of it. His Grace is sufficient for the thorn He chooses not to remove.

Friend, would we praise Him for His sustaining strength in our lives if it were not for reaching the end of our strength?

Would we consider Him enough if we did not find ourselves lacking?

Would we know humility if not for the discomfort of obstacles and the pain of intrusions?

Would we, as did Paul, rejoice to boast in weakness if not shown the truth of our Father’s seemingly backward paradigm of greatness–humility?

Today’s thorn stands guard over tomorrow’s rose. Don’t be surprised when our heavenly Father chooses to allow the wounding of our pride this day. He does so lovingly, sovereignly, and without mistake-in our unremoved pain-the rose we long to behold, just beyond the thorn.”

I’m weak. I’m poor. I’m humbled.

I’ve been meditating on I Peter 5:10:

“And after you have suffered a little while the God of all Grace, who has called you to His eternal glory in Christ, will Himself restore, confirm, strengthen and establish you.” 

Restore. Confirm. Strengthen. Establish.

The rose in the bud closed so tightly. I prick my heart on the thorn. It’s bleeding, but there is love in the blood.

Our Hope remains.

(Thank you for continuing to pray for our family. We are hard pressed on every side.

We need great wisdom to know what to do about Rolo. I’ve been in contact with a trainer who could work to make him similar to a therapy dog for Danica and myself. This would be a two week boarding situation away from our home and then some learning on our end when he returns. This is very costly and not an option right now, but it is the desire of our hearts. Whatever we decide please pray for Danica most of all.

Please pray for my trip to D.C. next week. The flying, brutal scans and appointment and the courage to face whatever we see in those images never gets easier. My dear friend, Kristin, who many of you have been praying for as she fought Lymphoma, is flying from Denver. She will drive me, and we will have sweet time together as friends. I also plan to meet the founder of Healing Hearts, the respite organization hosting Option EDS (the retreat) with me. There are some very specific financial needs associated with this appointment. Please pray I will be able to negotiate payment. We have maintained access to care with always enough. I am weary of the fight. I become more panicked when collections interfere with actual needed appointments.

Please pray for Dan and I. We feel like we are drifting and out of sheer exhaustion and pain it is difficult to make the space and time to reconnect. Our family is only as strong as our marriage.

Please praise God with us for protection over Danica during a big fall last week. She is okay. Please praise Him for provision for the window that needs replaced in Laney’s room. God showed up in the most amazing way to meet the specific request.  It’s such a relief to know it will be installed before winter.

He is still good.  Thank you for being the one’s carrying our mat to Him over and over.  We suffer gratitude.)

Gracelaced1

 

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