Archive of ‘Music’ category

Come after me. Meet me here again

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Ripening
“Even when we don’t desire it,
God is ripening.”

-Rilke, The Book of Hours I, 16

I’m sitting here at my desk watching my cursor blink as I rub my tongue over the aching gums around tooth six. It’s become the razor on my wrist. It’s the place I can touch over and over to distract from all the other pain. A few days before Christmas in 2019 I suffered a tiny injury from popcorn. Twenty months later I am not only resigned to this wounding, but it’s my darling.

I’m not exactly sure when it began. It was a slow fade during the eight weeks in bed recovering from my tethered cord surgery in March. Lent ended. Easter came and went. I wasn’t making it to my morning nest chair. The spiritual discipline and delight of beginning each morning in praise and prayer was lost. I was lost.

During this dark time a dear friend sent me a care package with a tiny canvas she painted. The above quote was hand written around the borders. How did she know? I had nothing left to seek Him anymore. I wrestled with childhood theology. The inkling of desire. The struggle with doubt. This was supposed to be the proof He’d claimed my heart. But what now?

Several weeks ago, as I was fighting for my Rituximab infusion and making plans to travel back to Ohio for treatment, I ordered the book of Psalms. A single volume. I counted the days left in Ordinary Time in the liturgical calendar and purposed to read one Psalm a day until Advent. My hope has been an honest soul reckoning and a strangled prayer, “If I’m yours, come after me.”

I cannot catch you up.

I can tell you what I did today.

My dad picked me up early this morning to drive me to pain management for occipital nerve blocks. Six deep needles under X-ray and ultrasound to avoid all the hardware and shunt tubes. If they help even a little we will ablate all the nerves in another procedure. Skull base headaches are just one brand of pain I carry, but this doctor has given me new hope. I was supposed to rest my head and neck when I got home. Instead I pushed myself to sit here in my office and fight.

Made my first entry in my post nerve block pain log.

Called the Phoenix Children’s pediatric cardiologist who did Danica’s echo to make an appointment. We are referred back to him because of Danica’s scary tilt table results. Got an appointment for September 14th.

Called the diagnosing cardiologist who prescribed two meds for Danica on Thursday to follow up on a peer to peer appeal because our insurance denied the very expensive drug that will be safe enough to slow her little heart. Still denied.

Logged pain.

Called the drug company. Yes, they have an assistance card that will help up to $160 a month for one dose daily. She needs two. It’s not nearly enough help.

Researched getting the drug from Canada.

Cried a little.

Called scheduling for imagining. Emailed the new order from Johns Hopkins for an MRI for Danica. Her X-Rays and CT show the slipping below her fusion. Got an appointment for next Wednesday morning. Called Hopkins to let them know she is scheduled.

Logged pain.

Called Delaney’s neurosurgeon at Weill-Cornell and left a message with her symptom diary. We see him virtually next Friday to go over her X-Rays and MRI.

Called our car insurance company about the $150 a month extra we are paying to insure Delaney who will be returning to college and rarely driving. Got it reduced to $100 a month because she will be over 100 miles away. I mapped it door to door. 104 miles.

Logged pain.

Called the local oncologist who has agreed to see me and consider my autoimmune encephalitis/PANS case. Made an appointment for August 19th. Called my Ohio oncologist to have entire history back into 2015 sent to him. Filled out new patient paperwork including an agreement I will pay 20% for appointments and any scheduled infusions knowing this access to care will mean several thousand dollars each treatment. But thank you God, maybe, no travel and collapsing in my own bed. Please.

Cried a little.

Logged pain.

Fielded interruptions from the girls trying to shop for back to school online. Why is this such a hard and joyless thing for us year after year? No, that’s too expensive. Go through your closets. What still fits you? Danica collapsed half way through with racing heart. Mom, I can’t do it. She needs her medication. Mom, I don’t need new shoes. Mom, Go lay down.

Called the cardiologist again. Fight dammit.

Logged onto ASU. Did the math. Texted Delaney her semester budget for food and miscellaneous expenses. Bought her a sturdy grocery tote bag on Amazon to carry her groceries in. Worried about her instability symptoms and if she can carry heavy groceries at all. She made an appointment on August 10th in Tempe for fingerprinting and an I-9 form for her new job at the ASU art museum. Worried about her physically being able to work and go to school full time.

Ran my tongue over the screaming gums around tooth six. Yes. That’s better. Focus there.

Logged pain. Called the pain management office to share my pain log. Did you feel relief? Yes. No. Maybe? It hurts so bad, but there were needles. No, I wasn’t resting. My arms and hands and low back and legs are sore and twitching. Right. Totally unrelated because you’ve never heard of this. Okay. Thanks. Made a follow up virtual appointment for Monday morning.

Laid down and watched an episode of Gilmore Girls with Danica.

Cried a little.

Texted Dan I can’t make dinner. Can he stop and buy me sweet tea? I can’t make any. I’m sorry.

Answered a text from a friend. Do you think your Ritux infusion is working? Ummm. I know it was too little too late after too long. I will need it again. Count the five weeks. The week of August 29th.

I’m suddenly in Psalm 6 with David.

“Be gracious to me, O Lord, for I am languishing;
heal me, O Lord, for my bones are troubled.
My soul is also greatly troubled.
But you, O Lord, how long?
Turn, O Lord, deliver my life;
save me for the sake of your steadfast love…
I am weary with my moaning;
every night I flood my bed with tears;
I drench my couch with weeping.
My eye wastes away because of grief;
it grows weak because of all my foes…”

Come after me.
Ripen me.
I’m not enough unless you come.
Meet me here again.

This song has been on repeat day after day after day.

(Steadfast love. Friends, you are His for sure heart for us. Until there are new words. Thank you.)

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Never See the End

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Never see the end

“…We think our testimony is supposed to be about our faithfulness, But our testimony is only ever how God is faithful to us, not the other way around. When we try to keep up the pretense for too long, we grow further away from God. To stay in relationship with God, when our worlds turn upside down and nothing makes sense, he invites us to lament, How amazing that a sovereign God is not offended by our big feelings. How amazing that He comes near.”-Alia Joy, Glorious Weakness: Discovering God in All We Lack

My unrelenting pain paralyzes me. The stillness and the groaning is really more like running and hiding. And I foolishly think I’ve ruined it all. My body, mind and heart are so weary. I cannot seek earnestly. But God is not offended by my lack of faithfulness. He is relentlessly pursuing me with scandalous grace. He knows my weakness. He entered it. He became it. He died to overcome it.

I will never see the end of His love.
This is where I’ll rest tonight.

(Mission House released their new album ‘I Heard A Song I Can’t Ignore’ yesterday. It’s truth over and over again.)

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Vulnerable.

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Warrior
“‘What is it you’re frightened of?’
asks my warrior side.
What fills your heart with such dread?
‘What happened to your coat of bravery you wore so confidently?’
I feel like a deer sometimes, I answer.
I’m not always like you.
I want to lie down in flower-kissed pasture,
let my eyes close against the sun.
I don’t want to be poised for battle, I say.
My buttons can’t always cover what’s inside.
Don’t be disappointed by what you see, I plead.
More kindly now, my warrior side asks,
‘But what is it you are really frightened of?’
The possibilities of the inevitable,
I manage to say in my soft deer voice.”

-Beverly Hyman-Fead, Patient Poets: Illness from Inside Out, Marilyn Chandler McEntyre

Today I’m the deer.
I want to lie down in a safe pasture with the sun in my face and cease to fight.

I’m terrified of Chiari. It was the first enemy. Both Danica and I slayed her. She’s resurrected and attacking my unsuspecting Laney girl without warning.

I’m angry from battling for insurance coverage for necessary imaging for Delaney and now the process of appeal for the ones denied. Maybe it’s just a cover for how mad I am this is happening at all.

I’m frustrated from fighting for care for an injury behind a tooth that has taken me to six appointments at four different dental specialists with no resolution.

I’m afraid of how sick I feel as persistent infections rage and my brain burns. There is no plan for treatment.

I’m devastated by the re-tethering of my spinal cord for the third time. I’m losing the feeling in my legs and feet. My neck is pulled backwards when I straighten my spine. I’m finding ways to curl up when I sit on the couch or in bed to make the stretching and burning less. If I sway in my belly hardens with contractions like labor. I’m not emptying my bladder fully because I cannot feel it. I’ve had two UTIs in the past month as a result. I will not seek surgery again until I’m unable to walk. I cannot.

I’m grieved by the hard decisions to close two doors to people and places I was sure God called me to this year. Things I wanted to prove I’m turning this pain into purpose. Things I wanted to prove I am doing something else with my life than just this surviving.

I’m heartbroken by the loss of intimacy with several close people in my life. I risked talking about my hurt. I forgot it’s safer to keep it to myself.

I’m lonely in the way being chronically ill always will be. Because only someone enlisted in the same war can crawl into the foxhole with me. But they can’t turn to look me in the eyes because our enemy is relentless (and their neck is most likely also fused). There are so many beautiful people waving flags and cheering from a distance. But I need triage instead of a parade. You can’t see that from over there.

I’m furious my children need a foxhole too.

I’m pretending like a good soldier. My husband needs me to say I’m okay. My girls need to feel I’m okay. If the bile starts to come up I swallow hard. Remember Monica. If you say you are hurt too loudly people may decide to walk away.

I’m ashamed. After all God’s faithfulness to my family and I how can I feel this hopeless about where we will live in a few months? This need to know where we will shelter trumps everything else all the time. Dan emailed today, “When are we going to talk about moving?” I’m paralyzed. This is just one more thing I am supposed to figure out.

I’m exhausted. Every night I sleep less my joints get looser and my body weaker.

I’m just so very tired.

Chronic illness is fraught with imagery of battles that might be won or at least an enemy that could be held at bay. We call ourselves ‘Warriors’ in the fight for big and little things in our lives especially access to care. This rubs against a faith that bids us to surrender to the will of God and His perfect plan knowing that might include long term suffering and even death for His glory. My mind and spirit are confused and fatigued by both.

I just want to lie down.

I didn’t prepare the FedEx with twenty pages of notes and reports and the discs of Delaney’s scans for the neurosurgeon in New York. I couldn’t write an encouraging note to someone else to shift any of this weight into kindness even though it’s what saves me most of the time. I didn’t make the pasta dish I promised the girls I would. I texted Dan I simply cannot pick the girls up from school even though it’s his gym day.

I’m paralyzed.
I wish I could scream.
I wish I could run.
I wish I could defect.

Instead I hear a tiny whisper of truth from a Word hidden in my heart.

“The LORD will fight for you; you need only to be still.”-Exodus 14:14

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Team Delaney. How Can I?

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Laney Red

“Miracles don’t always make faith. Tangible proofs don’t guarantee trust. Suffering, loss, difficulty, questions, wrestling and the oceanic grace and unflinching presence of God do. And, perhaps, the fact that grace and nearness show up in those kinds of places is, in spite of us, the real miracle. Then as St. Augustine said, ‘If we but turn to God, that itself is a gift of God.'”-Michele Cushatt, Relentless: The Unshakeable Presence of A God Who Never Leaves

I read somewhere recently the age of seventeen is a critical stage in a person’s development. It’s the time when a child begins to tell their unique narrative differently than their parent’s might. We craft our kid’s stories for them much of their childhood. At some point they claim what is fundamentally true and retell the rest.

I hear my voice saying it hundreds of time over the past ten years. After learning of Danica’s diagnosis and my own people would always ask, “What about your older daughter?” I always answered, “Delaney is the healthy one. She got her dad’s genes.”

I got Delaney’s story wrong.

I look back now and see clearly when her symptoms began. About two years ago she started complaining of little things. Her perfect vision drastically changed. She would talk about pressure during big weather events. The base of her skull hurt. She would mention vertigo. She felt like blacking out when she changed positions. She was either burning up or freezing cold. During the early months of these sporadic issues I was having four shunt surgeries at Hershey Medical Center in Pennsylvania. I was planning the first Option EDS retreat, and we were praying about moving to Tucson. I wasn’t ignoring her. But I did explain some of the things away or asked her to keep track of how often she felt them and how severe they were. Our family lived focusing on the biggest fire burning at any given time so her little blaze grew just out of sight.

Once we settled in Tucson and her symptoms increased I took Delaney to a general practitioner and we received referrals to a cardiologist and geneticist. In July she was diagnosed with Dysautonomia and POTS, Postural Orthostatic Tachycardia Syndrome, and began a cardiac and an adrenal medication. The wait to see the geneticist was seven months.

Delaney’s symptoms escalated in the past sixty days. She would wake up and feel like she couldn’t make it to school. She would push through but come home and collapse in bed. She asked to wear my Aspen collar to support her head and neck. In certain positions her face would begin to tremble and go numb. There was a growing, painful soft spot in the back of her skull. I’d never felt anything like it, and I couldn’t find any medical literature describing it.

Her genetics appointment was last Thursday. We went knowing she would be clinically evaluated for Ehlers Danlos Syndrome and would also do some specific gene testing which takes about a month to get back. The geneticist felt the skull opening during her exam and was visibly alarmed. The appointment changed into a rush to have X-rays and blood work and urgent orders for an upright brain and cervical spine MRI. We drove the two hours to Phoenix on Monday for imaging. I didn’t bring up the scans until Tuesday night. Dear God. I couldn’t breathe. There is a visible opening to her brain in the back of her skull illustrated by the strange sketches of black and white on the screen.

Because the MRIs were ordered by a geneticist we technically had no one to consult about the results. Wednesday morning I sent a text to Danica’s Johns Hopkins neurosurgeon with a screen shot from the scan. He called me immediately. Before moving to Hopkins he was at Barrows Neurological Institute in Phoenix. I prayed he would have a suggestion of someone to see at least initially here in Arizona. Delaney has an appointment with a neurosurgeon at Phoenix Children’s Tuesday afternoon.

I cannot write about the multitude of emotions each of us are facing. I don’t have the luxury of laying those out right now. My fierce mother instinct and all my neurosurgical knowledge and experience has been preparing me for something I never imagined I would have to do. My fight or flight over the past week has depleted every bit of cortisol. I sat in the Target parking lot yesterday afternoon and sobbed. I texted Dan. “I’m so tired. Exhausted. Emotional. I feel like I can’t safely drive home.” The very real need to physically do each next thing trumps the feelings.

This is the update. Oh how we need your prayers. Much like when I blogged through Danica’s journey I will plan to update here so please subscribe if you would like to follow. It’s difficult to return texts, voicemails and emails. That doesn’t mean they don’t mean so very much. This is a lonely road. Our tangible needs are very real. I will also share those here when we get our bearings. We will need your help.

Please pray for Delaney. It’s her final semester of high school. She is registered at Arizona State University Herberger Institute of Design and the Arts to study Interior Design in the fall. She’s been working on the Tucson Museum of Art’s Teen Council. She’s in an achingly beautiful part of her life where almost everything seems possible and suddenly so much harder. Our narrative for her has always been one of God writing all her days. She’s seen lament and praise, suffering and joy, and need and plenty in a thousand ways. But what does she believe when road testing all these things for herself?

We talked about miracles this week. Someone well meaning already threw the word out there in a faith context that made me cringe. We’ve seen miracles. We expect miracles. But not in the waking up and the skull is perfectly healed kind of way. Not because we don’t think God is able, but because we know this is not the way faith works.

I’ve been reading through Michele Cushatt’s ‘Relentless’ for the second time. In a chapter about God being with us in our doubt she writes:

“Perhaps it’s time to revisit the miracles and evidences we’ve already seen. He has doggedly pursued us in spite of our every attempt to push Him out. His presence is big enough to enter into dark places, confusing places, ugly and beyond-understanding places and, by the sheer magnitude of his mystery, shine a light far too bright to be eclipsed by our doubt.

If I dare trust Him even here, doubt turns out to be a gift. A strange, hard gift, to be sure. But the means of a deeper faith. And if faith grows in a darkness with every sinister attempt to ruin it, then perhaps that is the real miracle after all.”

I’ve found Laney leaning into God this week. She’s turned up the music that speaks truth. She’s practicing the spiritual disciplines that often lead us out of the dark of doubt into the light of faith. This is her story. I asked her what song is meaning the most to her right now and she shared this. I’d never heard it before, and it’s left me with my eyes pointed to Christ. How can I thank Him? For even this? Because it’s ALL GRACE.

Our Hope Remains.

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Fellowship of The Broken

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IMG_1450 (2)

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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In Returning and Rest

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Sunset

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

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

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

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

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

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

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

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

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

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

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

 

 

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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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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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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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Exhale. Learning to Breathe Again. Opening My Hands. A Team Danica-Monica Update

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ButterflyOpenHands

“Unexpected Grace always settles in the palm of Heaven turned hands.”–Ann Voskamp

It’s perfectly quiet here this morning except the achingly perfect coo of a morning dove. The comforting bird song I’ve treasured since I was a child lulls me into deep breathing. Since Arizona I’ve returned to practicing meditation. I’m learning much about how often my mind wanders away from truth to fear. Each breath in and out is a chance to BEGIN AGAIN. No judgment. Back to Jesus. I’m realizing how Grace can be simplified to gratitude for each next long inhale and exhale. Every intricate detail of my physical being is a miracle. As I scan my body for pain I pray through the suffering. I’m alive. I am filled with the Spirit of God. My body is not an enemy. I end each session with the words from Psalm 19:14, “May these words of my mouth and this meditation of my heart be pleasing in your sight, LORD, my Rock and my Redeemer.” I arise in strength and dignity.

March is a month of hard for us. Every spring break for my girls the past decade has included some kind of medical trip for Danica and I or surgery for me away from them. This year will be no different. During certain seasons I return to what I’ve written to gain perspective and remember God’s faithfulness when I am discouraged. I wrote this in March, 2014:

I’m looking at the flat, barren landscape of 71. This stretch of pavement between Columbus and Cincinnati is one I have grown to hate over the years. If you paint our journey with a broad stroke or view this piece of art from a distance you may only see the colors of hope and healing. They are vibrant and breathtaking. But for us, the ones who have watched this masterpiece morph, no matter what news comes at the end of these trips, the road is bump after bump of pain literally and figuratively. The dark shadows most think we should have moved on from are still looming at every mile post. We see the financial drain each mile we move closer. No matter how God has provided we still come to this thicket wondering when and where the ram will appear. Our new year deductibles chase us. Knowing the cost is thousands of dollars to even walk in the door is a weight we drag behind us like chains on our ankles. Because of my shunt revision surgery , Maryland trip out of network, more hotels nights, more driving, more of it all we gasp for air. There is no choice but to keep moving even though it feels like quicksand.

I canceled this important trip earlier this year, because I was simply not well enough, and I just didn’t have the strength to do this. Weeks before we come here I begin to have racing thoughts about the hotel, the hospital, the anesthesia, giving our girl up to strangers for hours while we wait, and the dark room where they show us the scans. I hate the smells and the glazed over look in almost everyone’s eyes as they wander from appointment to appointment or down from their child’s room to get a meal in the cafeteria. I have flashbacks of Danica in those days following her surgery when she thrashed insanely in pain, and I went days without sleeping trying to save her and orchestrate her care. In the end there is the obligatory gift shop trip to reward a little girl in some tangible way for her bravery in all this, and it seems like it is all a bad Lifetime movie. Only this is not two hours with a happy ending or at least some inspirational and didactic meaning to carry away. This is our life. My chest is tight. My head is aching. I know the exhaust of the cars and trucks on the road are adding to my increasing feelings of anxiety and manic mind and heart. The silence between Dan and I grows more caustic. He closes himself off. It has never been any different. I want to talk this all through for the thousandth time, and he just needs to drive and do what needs to be done. I begin to cry. Every single time tears begin to fall down my cheeks the closer we get.

I remember the first trip here. It was April 2010, almost exactly four years ago. We knew Danica’s decompression in November of 2009 for her Chiari malformation had failed. Many of her symptoms had returned and even escalated in the few months since we let them cut open her head and neck and shave away bone from her vertebrae to make more room for her brain. Her little neck falling to the right again was the most glaring sign we did not succeed and perhaps had even made her worse. Suddenly we needed to be much more informed about the condition and what underlying genetic mutations might be causing it. We were scared. Although the first brain surgery was scary, we still believed it was something really hard God was asking us to do just for a time. We thought it was something broken in our girl we could fix. Our first trip to Cincinnati solidified this “C” word was here to stay.

Our “simple” Chiari story which seemed like a miracle for the first few months became our entire life. You began to read here and raise money and pray. We were overwhelmed as people from all over the United States and the world wanted to support us here at our little blogspot blog which became Team Danica. I had always been a writer, but I never needed an audience for what I scribbled and pecked away in private. I even tried to hide my writing. Suddenly, I had hundreds of people checking in for updates, and not just to see how we were or what the plan was but to truly share our hearts in all this. Somehow, in all the lament and torment of those early days, this place became where I could honestly share what this kind of journey looks and feels like. Dan joined occasionally to show his husband and daddy heart. It wasn’t always easy or cathartic to keep coming back here, and I took breaks for sure because of fear or sadness or just plain exhaustion, but whenever I would stop writing people would email or message or call and tell me they needed to keep reading and following. Team Danica became as much a blog about my health and journey as our sweet girls’. Still you came to read and pray and support us.

Four years we’ve been here.

The well of love has always been deeper than the well of pain and suffering.

The strength and grace of our God has always been ENOUGH.

The provision has always come.

Our Hope has remained even on the darkest days, because we believe.

We believe because He causes us to trust and loves us even when we don’t.

. . . We are here in the hotel now. Michael Card’s “Sleep Sound in Jesus” plays on my itunes while I type. Dan and Danica are drifting off. I can see the Children’s Hospital sign lit up in the dark from our window. My prayers try to cover the hundreds of beds full of children who sleep there tonight fighting some illness, healing from a surgery, waiting for a diagnosis and the parents who sit vigil with them. I pray for the doctors and nurses who sacrifice to join in these wars. I pray for those who do not have a voice like we have to ask for prayer or support or a meal or a hug.

I feel a calm peace about our tomorrow. It may be my Ativan (smile), but more likely it is the prayer with Danica before bed and heading back to the arms of Jesus in the simple words of these lullabies. I am reminded of a God moment from my Tuscon trip when He allowed me to see a big picture view of our life as it intersects so intricately with people we don’t even know.

On my last flight home from Atlanta to Akron/Canton God sat me next to a woman from Wichita, Kansas. I was tired and grumpy and very anxious about how my body was going to react to the pressure and weather changes. I had the best and healthiest week of my life since before Danica’s diagnosis. Besides missing my family I did not want to come home. I politely settled into my window seat and asked her where she was from and where she was going. She asked me the same questions. I mentioned my shunt surgery and a trip to heal. She asked me why I had a shunt, and I shared a quick headline blurb. I really wanted to finish writing in my journal and listen to some music on this last flight. She told me her nineteen year old son Jack was born with a spinal cord issue and at four months old they flew him to Cincinnati Children’s Hospital for surgery. Guess who Jack’s surgeons were almost twenty years ago? Yes, Dr. Kerry Crone, neurosurgeon and Dr. Alvin Crawford, orthopedic surgeon, banded together in a joint surgery that had never been done before. This was no coincidence. We gushed our stories to one another through tears. Then it came out and stopped us both in our tracks. It was the summer of 2010. Danica was scheduled for surgery and Dr. Crawford pulled out leaving us with a brain surgeon but no willing bone surgeon. Far away her son Jack was also scheduled for his last orthopedic surgery with Dr. Crawford to fix an issue with his foot. He was fifteen years old.

We now know Dr. Crawford was considering retiring that summer and so he was shying away from difficult cases he could not follow, especially a little girl with atlas assimilation and a failed decompression who no one else wanted to fuse until she was six or seven. Jack could have had one of Dr. Crawford’s up and coming surgeons, and it might have been fine, but it wouldn’t have been what their family needed or wanted after so much care from one man. I can still see myself praying on my knees by Danica’s door at our house on 35th St. I didn’t understand why God would bring us to this dark place if He wasn’t going to see us through it. If you go back in the archives and read my wrestling, the tension in Dan and I’s marriage, the palpable hysteria of not knowing where to go next you will understand in part my desperation. Suddenly, Dr. Crawford was back on board. He put himself completely into Danica’s case including designing the special hardware and having it made and taking her images and having a 3D model of her skull and cervical spine made to teach from. Jack got his surgery too. He is doing well four years later.

I can’t think of any other way God could have shown me how brilliantly He in charge and how little we need to know about it to trust Him. One of the most beautiful lessons I learned early on in all this was how most of what is happening to me and around me is much less about me than I ever could have imagined. Yes, He’s working in and through me but it’s for something so much bigger. Oh how I cheapen my life when I make my God small. I see in a mirror dimly what He will make clear someday. For some reason He chose to clean the mirror a little on my flight so I would SEE Him in even the last hours of my trip…

I promise for a quick update on the brain part of our trip tomorrow. Danica’s MRI is scheduled for 7:30 am, and we will see her neurosurgeon, Dr. Crone, at 11:15 am. The orthopedics scans and visit are on Tuesday. We have every reason to hope for a perfectly good scan. Danica has almost no symptoms of Chiari or any neurological deficit at this time. Thank you for praying for the anesthesia to go smoothly and for all the details of the day. We treasure your lifting us up! Please pray for our Laney who is back home with my mom. She was very emotional about us going and called crying twice today. This is not like her, and it breaks my heart. It was a reminder how much each one of us carry around because of Danica’s health and especially what Delaney has been asked to walk through since my pregnancy with her little sister. She is so brave and independent, but the first to say we should move to Arizona so she could have her mama back.

No matter what you are carrying tonight, I hope this wandering of words down our past four years and the glimpse He gave me of His sovereignty will encourage you to not crumble under the weight of what He asks you to bear. He is doing something bigger than you can see.

I know it for sure.

A year ago we planned the girl’s spring break as another trip to Cincinnati. We thought it would be a graduation of sorts. We were sure it would be a celebration of complete fusion and release for Danica to finally be able to return to the childish play she’d longed for. Instead we found her broken hardware. I took a long jagged inhale and held it. I am realizing now I hadn’t exhaled for the entirety of the past year. On my recent trip to Arizona I remembered to breathe again.

Monday we will leave for Baltimore on another spring break. We will see Danica’s neurosurgeon at Johns Hopkins and look at new scans. We expect good things, but we go with open minds and hearts to whatever they show.

Seven years we’ve been here.

The well of love has always been deeper than the well of pain and suffering.

The strength and grace of our God has always been ENOUGH.

The provision has always come.

Our Hope has remained even on the darkest days, because we believe.

We believe because He causes us to trust and loves us even when we don’t.

Thank you for praying for us. I am still recovering from my chemo treatment Tuesday. My shunt is simply not working properly, and I cannot deal with the needed steps to move towards fixing it until we get through this Maryland trip for Danica. The financial avalanche begins to take us down by the third month of each year. I spend hours each day on trying to sort through what must be paid for continued treatment, what necessarily will fall into collections and what must be approved by insurance for the next access to care. I make hotel reservations not for fun but for bodies flung in exhaustion. Dan takes vacation for a road trip to doctors and hospitals.

I wonder what it would be like to heal without this stress. Could I be more well?

I believe Jesus paid it all. I cannot feel guilty about something I did not choose or cause. He has always been enough. He will always be enough. He is enough. Open Hands.

I’ve been listening to Laura Story’s new song by the same name on repeat this week. The Lord gives and He takes away. Blessed be the name of the Lord. Our Hope remains.

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