Archive of ‘Team Danica’ 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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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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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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Kingdom Currency. Where Life is Found

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FamilyCorolla

“We didn’t need our own miracle to believe that God can perform miracles. His word already speaks this truth. We needed His perspective, sown into our inner understanding of Him, to be able not just to witness but to receive the real miracle He was working. Again, it was looking at Him, long and rightly, that was performing miracles. Adoration makes walking with God more than just reacting to a series of externals. Adoration calls the circumstances, no matter how high or low, into proper submission in our hearts. Adoration roots us in a reality that no amount of pain and no amount of blessing can shake. Adoration steadies us. It repatterns our thinking. It centers our lives around a God-man instead of forever trying to make sense of the God-man through the lenses of our circumstances. Adoration aligns us under Him. This is the place where life is found.–Sara Hagerty, Every Bitter Thing is Sweet: Tasting the Goodness of God In All Things

I am sitting in my bed with pillows propped around my braced neck and crumbling spine. I’m in pain. I’m in the kind of pain that makes me bite the insides of my cheeks raw and cry without warning. I’ve done basic hygiene and made my bed. I wrote a note to a friend who is struggling. I answered one text. I drove Delaney to Sable Creek golf course, there and back home, twice today. Driving is the hardest thing I do. I’m done. That’s all I have to give. It’s 4 pm. In my body’s demand to completely stop my mind begins to race.

The tree company arrived next door early this morning. They are still working. The sound of the vibrating machines is almost more than I can bear. Every synapse is firing. I’m so overstimulated I might go mad. It’s the third time our neighbors have had tree work done this summer. Both our homes back to woods. We have one towering dead tree on the hill behind our house. Dangerous branches have fallen during recent storms. It threatens us, but we can’t imagine a time we will have the money it would take to have it removed. We haven’t been sitting on our deck this summer because we can’t bear to look at the dead tree or the bank leading to it without mulch for the second year in a row. We haven’t grilled once because the propane tank is empty, and we don’t allocate the money to refill it. The ‘replace filter’ light is blinking on the thermostat. I’ve added it to a list of escalated things I need to rearrange the budget for. Delaney’s bedroom window is taped shut and literally falling out of the front of the house. We planned to replace it this spring, but there was my shunt surgery, and it never happened. We should not live in a home we cannot maintain. This little ranch rescued me. It saved our family in a hundred ways after living in my parent’s basement. It was a miracle, but it was a stretch. Five years later we are worn thin.

I was hospitalized two weeks ago. After finding out I was in serious adrenal crisis, most likely since my April shunt revision, I began taking a medication I’d used before after surgeries for Addison type symptoms. For some reason it began causing horrific peripheral neuropathy in my legs. I suffered in writhing pain for days until I surrendered to the fact I needed medical attention. The sixteen hours in the emergency room and days admitted there were traumatic. They are always traumatic. Only my EDS family can fully understand how hard we have to fight and how vigilant we have to be with every interaction. With all due respect to the wonderful men and women who give care in these settings, it is a brutal exchange for those of us with a rare disorder, a rap sheet of surgeries and accompanying conditions and a scary list of medications. I was released in less pain but completely broken. I am waiting for an endocrinology appointment while barely dragging my body around.

In counseling I tried to explain this never ending life of ‘fight or flight.’ The financial part of this is as real as the physical. We cannot catch our breath or ‘rest and digest.’ We have reached a point where we must take stock of what we’ve lost, what is owed and seriously consider if this survival mode is sustainable any longer. If it’s not, where do we go?  What do we do?

I quit writing because my old, hand-me-down laptop crashed and died. A new one showed up on my doorstep just as I was needing to create a website for an exciting dream coming true. (I can’t wait to tell you all about it!) Delaney needed golf clubs to begin practice for school and a family we hardly know from Cleveland drove some down to her. Enough. My parents took Danica to shop for her school supplies. A friend texted me to let me know she mailed a gift card to help with some of the other things the girls need. Enough.  At Rolo’s first vet visit last week we found out he has a few health issues. I cried and hyperventilated as she went down the list of medication he needs. Checking out, I had twenty dollars left over after paying the staggering amount we owed. Dan was getting paid the next morning. Enough. A gofundme donation came through as a medical bill escalated in collections, and I could pay it. Enough.   

Our God has been ever faithful. He’s always provided enough. But what if His ‘Dayenu’ is a different currency? Would I recognize this kind of wealth? Would I call it abundance? What if enough is only ever found in knowing and adoring Him?

We had a family ‘come to Jesus’ meeting last weekend. We looked our girls in the eyes and talked to them as straight as we always have. We tempered the reminder of our reality with the goodness of God through the love of so many. We assured them we would be okay, but let them know we are at a crossroads that requires input from each one of us and a lot of prayer. Somehow we came to the question about choosing. If I could choose a fresh slate…all our debts forgiven…a new start for my family or complete healing for myself which would I pick. I answered too quickly. I would choose to set them free. I would take the pressure off Dan. I would have a college savings account for Delaney. I would hear the phone ring and check the mailbox without fear and panic. Even as I thought it I realized how flawed the question was. Either answer would be wrong, because this place of perceived lack is exactly where God wants each of us to be. He is working a thousand things we cannot see in my suffering and in our need. These are fashioned for Dan, Laney, Danica and I in a perfect way to train our hearts to know Him and depend on Him alone. He has been glorified in my pain and in the pouring out of provision over and over again. We are rich in Kingdom currency.

I’ve been living in the Psalms this year, and they have slowly retrained the way I see and know God’s character. I visit them first thing when I rise. Dan makes me coffee. I sit in my nest chair and open my Bible to a book of songs and poetry about God. Tim Keller’s little gem of a book, The Songs of Jesus, has guided me. Several days ago I was in Psalm 86:1-7:

“Hear me, LORD, and answer me, for I am poor and needy. Guard my life, for I am faithful to you; save your servant who trusts in you. You are my God; have mercy on me, LORD, for I call to you all day long. Bring joy to your servant, LORD, for I put my trust in you. You, LORD, are forgiving and good, abounding in love to all who call to you. Hear my prayer, LORD; listen to my cry for mercy. When I am in distress, I call to you, because you answer me.”

Tim ends the devotional with this prayer:

Lord, I am constantly asking You to give me Your strength, to change me and heal me. But nothing is more empowering and life transforming than simply adoring You. Inject the truth of Your wisdom, love, holiness and sovereignty down deep in my heart until it catches fire there and makes me new. Amen.

I’m grinding my teeth as I type. I have to focus to relax my face and my mouth. My neck literally twitches in spasms. It’s easy to stay fixated here, because my pain screams at me. This is when I call out in distress and believe He will answer me, because I know who He is. He is forgiving and good and abounding in love. And He is enough. His Grace is enough. And even this is Grace.  

Kingdom currency.

This is where life is found.  

(Will you please pray for us. We feel pressed to make some kind of change. We need wisdom to know each next thing. Please pray for my health. I have chemo next Tuesday, and I will see the new endocrinologist in several weeks. Until then I have to keep functioning. Please pray for Danica. Her scan and neurosurgeon appointment in Baltimore are on the 15th. Her neck has been hurting her. I rubbed it last night as I tucked her in and felt the all too familiar lumps of knotted muscle around her hardware. She is so hopeful for most of her restrictions to be lifted before school begins. Something in my gut says this is too soon. It will break her heart. Please pray for Dan. I see him crumbling in a new way. We have always stayed close in our hard, but this feels different, and we are both struggling to connect. Please pray for Delaney. Oh how I wish I could make this different for her somehow. Her compassion and empathy has grown. We talked candidly about her personal faith yesterday, and it reminded me again of all the soul business God is doing in what looks like a hot mess from the outside. I have to trust Him with the most precious currency, the hearts and lives of my husband and girls. Our Hope remains.)

Photo by Audra at 12th Street Portraits

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She is nine. A Team Danica Update

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“She is nine, beloved, as open-faced as the sky and as self-contained. I have watched her grow. As recently as three or four years ago, she had a young child’s perfectly shallow receptiveness; she fitted into the world of time, it fitted into her, as thoughtlessly as sky fits its edges, or a river its banks. But as she has grown, her smile has widened with a touch of fear and her glance has taken on depth. Now she is aware of some of the losses you incur by being here–the extortionary rent you have to pay as long as you stay.”–Annie Dillard

DanicaRolo

Danica has a journal where she’s kept heart longings for recovery after her surgery. In her innocent child handwriting she wrote healing wishes. They are hopes like swimming, running and playing outside at recess with her friends again.  Every numbered list is a little different but each one has a common desire.  She wanted a puppy of her own.

When your child is facing brain and spine surgery and months of restrictions and losses before and after you will promise them almost anything and worry about making good on it later.  The dog was a yes like that.  As the summer began to slip through our fingers and Danica’s next big scan and neurosurgeon trip to Johns Hopkins in early August approached her longing for a dog grew.  The finances, logistics and the energy to make this addition to our family happen were difficult.  I was particularly hesitant because I know the majority of caring for a new dog falls on me once the girls go back to school.  My parents offered to help with the purchase, but I was dragging my feet.  Danica was searching dogs online for hours each day.  She studied breeds and made lists of names.  She kept a log of the money she had and asked how she could earn more to help with the cost.  And then she prayed.  Every night when I tucked her in she asked God to please bring her a dog.

She is nine.  Everything she’s endured has not hardened her, but she is changed.  She can’t go back and reclaim the losses or forget the suffering.  But she can believe sometimes putting something on a list enough times is like saying the earnest prayer over and over. She can believe dreams come true through the people who love you most and would give anything to see your pure childhood joy just one more time.

Welcome to our family, Rolo.

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When Hope Seems to Die.

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Rainfall
“But even as hope died in Sam, or seemed to die, it was turned into a new strength…and he felt through all his limbs a thrill, as if he was turning into some creature of stone and steel that could neither despair nor weariness, nor endless barren miles could subdue.”–J.R. Tolkien, The Lord of The Rings

I’ve been home from Virginia for a week now. I continually reach up to run my fingers over the prickly hair growing back around a head wound gathered together with brutal metal staples. It throbs in a mending kind of way. Despite days of heavy rain and barometric pressure changes I’ve had no intracranial hypertension headache, and I can see clearly. This is what I prayed for. It is what I asked you to pray for.

It was my twenty-fifth surgery. It was certainly not minor. It involved replacing a clogged valve in my shunt and tubing in a ventricle in my brain that allows built up cerebral spinal fluid to drain. I had an unnamed anxiety I don’t have with my spinal surgeries, but the time in the operating room was much shorter, and I was in the hospital only forty-eight hours post-op. The few days of respite I found in late February in Arizona were completely undone by the flight home and the loss of my shunt function. The fifty-nine days leading to this surgery included three trips to Charlottesville, Virginia, the last two with hospital stays. Danica’s Hopkins trip was sandwiched in. If you’ve read our story long you know I manage different kinds of pain with varying levels of grace. Pressure at it’s worst renders me completely disabled and hopeless. There is no medication that brings me relief. The level of fluid that collects in my subarachnoid space puts me at risk for stroke and permanent blindness. This is my fifth shunt. I had three lumbar peritoneal shunts that all eventually failed due to calcification of the device and tubing. My first ventricular peritoneal shunt was placed exactly one year to the day before this revision. It was a miracle and gave me total relief from symptoms. I can’t imagine having gone through my huge fusion in October or Danica’s surgery and recovery without the healing I was given.

The trauma of the process of surgery when multiplied over and over cannot be explained. Something about this shunt failing when it did, the suffering along with the fighting and traveling for help and the reopening of my head unhinged me like nothing else has before.

Nothing.

I’ve been completely undone.

I’ve wept buckets of tears.

I’ve hidden in shame.

I’ve lied and said I’m okay when I am not.

I am not okay.

I’ve been curled in the fetal position gasping for jagged breaths. My mom dropped the girls off after school every day, and they would find me in bed with bloodshot eyes and a pile of snotty tissues. I cannot disguise this kind of fear and grief from them. I tried to explain, “This happens sometimes. It’s the anesthesia. It’s the stopping of pain medication. It’s the first opportunity I’ve had to mentally and emotionally process an impossibly hard year…” I prayed with them. After all, this is the right thing to do. When we are hurting we take it to God. When we are afraid we trust in Him. I answered texts and emails with the tone of healing, but I did not answer my phone or let anyone visit. Before Dan would get home I got out of our bed, washed my face and greeted him at the door. I pretended for him in a way I didn’t feel I needed to with Delaney and Danica. He says he is only as well as I am. I couldn’t bear to tell him how desperate he should be feeling.

The anxiety has been all consuming. For the first time in a decade I’ve begun to doubt my salvation. It’s as if I suddenly realized THIS IS MY LIFE. There is no asking for this cup to pass. EDS cannot pass. None of this intervention can be fully healed on this earth. This is not a faith issue. This is strands of DNA and failing flesh. What do I do with that? My body will never be more well than it is now. I’m forty-one years old. I won’t ever turn my neck to the left or the right again. I’ll never not have a bulging device sewn into the front of my head. The relief I’ve sought has plunged our family into a chasm of debt we will never recover from. I feel selfish. I feel ugly. I’m second guessing every time I’ve fought for better if this is as good as it can be. I feel like a liar, because I’ve said hopeful things for so long now. I believed them. I held others up with the faithful words of a God I now question. I want to open my laptop and delete all of Gauntlet with a Gift. I want to delete the files from the years I wrote at Team Danica and the years I’ve written here. Was any of it real?

Friday I did everything I could to move myself into a different head and heart space. I didn’t get back into bed when Dan and the girls left for the day. I made the bed. I showered and shaved my legs. I washed my hair and tried to style some pieces over the hideous incisions. I was exhausted. I needed to go to the post office to buy stamps for bills and mail a few love gifts. I had a panic attack. What if the postal workers notice my head or a stranger asks what happened to me and I break down in public? I considered not going, but my friend’s birthday was the day before. She’s fighting cancer, and I was late to love her, so I breathed in and out, and I got in the car. In the pouring rain I drove myself to a tanning place, and I went in and paid for ten minutes of light therapy. UV rays and vitamin D have helped in the past. It was full of people with the same idea including a rogue Axe body spray wearing male somewhere in the salon. Half way through my time I was in a crazy mast cell attack. These are always worst after surgery. I cried. I used a gross tissue in the bottom of my purse to try and straighten up. I went through the Starbucks drive thru and bought a venti white mocha with whip. I just needed to practice some self care, right? It was going to be fine. I drove to school to pick up my Delaney and Danica in car rider line. I listened to my favorite worship music. I cried. I used my sleeve to try and straighten up. I felt something stir inside me, and I posted a picture of healing IV bruises on Instagram. Sometimes saying things are getting better might actually make things better. Words have power like that. But not this time. I got home and crawled back under my weighted covers.

Yesterday was Dan’s only day off. For our family this means we have to get things done, because I cannot lift laundry baskets or grocery shop. While I was away Dan helped Danica go through her drawers and take inventory of how little she fits in and make a list of what she needs for a new season. We drove to Old Navy first. The smell of the store brings me to my knees. I knew I had twenty to thirty minutes max before I got deathly ill. I fake smiled and acted excited as we looked through the clearance rack and sale priced items and matched a few outfits together and found two dresses, because Danica is determined to get this family to church no matter what, and she has to wear a dress. I had a fifty percent coupon for Michaels and Danica needed a plain white t-shirt to paint at school for field day…a day she won’t attend, because of her restrictions, but she still wants to do a shirt. If Old Navy is Agent Orange to me then Michaels is Napalm. Our in and out trip left me shaking. We were back in the car and were supposed to get the Target health and beauty and groceries next, but I couldn’t. I had to get home immediately. I cried. I spent the afternoon between bed and the bathroom. The fallout from visiting those two stores would be hours of sickness. Danica was so happy with her new things. Dan and Delaney had to go back out. Danica came to snuggle me, and I cried. I told her I was sorry. I reminded her our family rule, “We all get to feel how we feel.” I reminded her how sad surgery can make you. She squeezed my hand and went to her room to play with her dolls. I cried.

Finally, I did the brave thing. The hardest thing. I reached for my phone and dialed the number of my older sister, Rochelle. She’s the one who has seen me at my worst and never looked away. She’d driven to the hospital just a week before to sit with me. She’s done this more times than I can count no matter what state my surgery is in. She shows up. Just a week before she somehow came over the mountain from West Virginia, a three hour drive, to sit in the UVA emergency room with me for an hour. She just shows up. I do pretend with her sometimes, but she knows. She can hear the empty lilt to my voice as I offer very little personal information and ask her a bunch of questions instead. This call began the same way. I asked how she was. I listened to the joy of her busy week watching my nephew Avery play tennis in a regional competition. Without warning my pain came pouring out of me like a river breaking dam. With every word I was finally moving towards truth. Of course, I know this. Say it out loud. Name it, and it loses power. Tell someone who knows your whole story. Tell someone you can trust with your heart. They will speak gentle words back to you, and you will move an inch toward healing and light. She listened. She cried. She allowed me to be exactly where I was without judgement. The only thing she wouldn’t let me leave with was the feeling I was no longer a child of God. She reminded me He already finished this big fight and won, He is for me and there is nothing I can do to to lose this love.

Later in bed I was crying again. Dan took my hand and held it tightly. He never tries to rush me to something else. This morning he left for Dayton for an overnight overtime trip. His leaving brought my fear back to the surface. I did something else brave. I texted my parents. I told them how I’m not okay. I asked them to pray. After church they brought me a chai and picked up Danica to spend the afternoon with her. I sat here in my nest chair and opened my Bible to Psalm 88. It’s a Psalm of lament that doesn’t try to end on a high note. It doesn’t try to rush you to something else. God gave it to us for a reason. The last words from Heman, one of the pioneers from the singing guild set up by David, are, “Darkness is my closest friend.”

Timothy Keller writes about this Psalm in his book Walking with God through Pain and Suffering.

“Three times in the Psalm the word ‘darkness’ occurs (v. 7, 12, 18). The effect is to say it is possible to pray and pray and endure and things not really get any better. The Psalm ends without a note of hope and so its teaching is that a believer can live right and still remain in darkness. Darkness may symbolize either outside difficult circumstances or an inner spiritual state of pain. That is the very realistic, tough message at the center of this Psalm. Things don’t have to quickly work themselves out, nor does it always become clear why this or that happened. One commentator wrote: ‘Whoever devises from the Scriptures a philosophy in which everything turns out right has to begin by tearing this page out of the volume…The very presence of such prayers in Scripture is a witness to His (God’s) understanding. He knows how men speak when they are desperate.’ Kidner’s point is this. If we believe that God through the Holy Spirit inspired and assembled Scriptures for us, then we see that God has not censored prayers like this…God remains this man’s God not because the man put on a happy face and controls all his emotions, but because of grace.”

And so today I sit with a God who doesn’t try to rush me to a praise especially when my Hope seems to be dying. Somewhere in the deep sorrow I feel the tiniest shiver of a goosebump of joy. I want the ache to eventually drive me into a greater sureness of His love for me and strengthen the belief that my afflictions will someday be once and for all eclipsed by His glory. Until then I lament and He listens and loves just the same.

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