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

The Thorn. Keep Bleeding. Turn it into Love

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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.

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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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What Can I Give? An EDS Retreat is Born

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“As you move to the rhythm of the Spirit of God, what is within you that you can now give to someone else? Not for the glory of yourself, but as a person who bears the image of God in the world. What are those things in the deepest part of who you are, the personality and desires and unique blending of history and circumstances and longing–what is most alive in you as you are united with Christ that you can now pour out as an offering unto God for the benefit of others?” ~ Emily Freeman

We begin with our stories, always.

It was June, 2009. Delaney was six. Danica was twenty months old.  A few weeks before leaving for vacation our baby girl’s neck went crooked. The appointments for scans and specialists were a month out, and we decided to go ahead with our trip. Each mile seemed like a hundred as Danica cried in her car seat. The photos from our week show her wincing in pain and confusion. We didn’t yet know the words, “Chiari” or “Ehlers Danlos Syndrome.”

Over the next six grueling years we begged God to redeem that trip to Corolla. He did this through the love of dear ones who watched our struggle and wanted to make some kind of respite happen for us in a place we longed for and needed to return to. The time away in May, 2015 solidified something in all of us. We were strangely tethered to this particular geography of sand and waves and horses living wild and free in the dunes. We felt like nothing could touch us there. Wounds that were continually opened by our never ending hard scabbed over in the salt water of the Atlantic. There were no doctor’s appointments. There were no collection calls or bills arriving in the mail. I had a wellness near the sea I could never grasp back at home. We didn’t speak much about the trip before leaving. Our plans have a way of tragically falling through. Those who knew said things like, “You guys deserve this.” I would squirm. I know and love too many without even a hope of a beach vacation. I never once thought it was anything but pure grace.

The heart of this retreat began beating long before I knew I was carrying the dream. It was conceived in December, 2011 in a gorgeous home on the shores of Lake Cable in Canton, Ohio as I rested and recovered from my first Chiari brain decompression and cervical fusion. The wall of windows facing the water was a prism of healing light and heat. I spent ten weeks there. They were some of the longest and most painful days and nights of my life, but I knew the opportunity to mend in a beautiful and peaceful place was rare treasure.  I wished I could give this same experience to other women.  I imagined the empty bedrooms filled with sisters who needed to come away and rest.

Just three months following my first neurosurgery, I returned to Maryland for a tethered spinal cord release. It was the beginning of many years of serious brain, spine and abdominal operations. Danica’s diagnoses uncovered the faulty DNA I’d passed on to her and led me to understand my own life of symptoms and suffering. During this time I blogged much of Danica and I’s story. I formed relationships online with others who were sick like us. Almost all of our care was away from home and required travel. An amazing community showed up.  We met in hotel lobbies, doctor’s offices and surgical waiting rooms. We texted, messaged and called one another day or night.  We became family.

Last summer we found out Danica needed another scary brain and spine surgery. Once again someone close to us gave the hope of a trip to hold on to. We imagined ourselves sitting in the sun and surf having survived. It gave us something tangible to fight for and look forward to. In late May of this year we made it back to Corolla. The house we stayed in was not just a rental but someone’s real home. I moved through the rooms, and I thought of the girls I longed to invite to rest by the sea. Their names were circled over and over again in the “retreat” journal I’d been keeping for years. They are young women I’ve met in internet support groups, face to face waiting for appointments and scans and in hospital beds after surgery. I’ve encouraged and loved them through pen to paper, care packages and oh so much prayer. My husband Dan and I sat on the back deck watching the sun slip into the Currituck sound and talked about the dream to host zebra warriors there.

I felt the pressure and fullness of time when one is to finally say “yes” to a calling birthed from the most passionate places of joy and pain. I knew my first leap of faith would be asking for donations to put a deposit on the place the retreat would happen and committing to dates. I found a big house with an elevator and other accessible features and sent a request to the rental company about availability for May, 2018. I explored forming my own non-profit that would offer my donors tax benefits. To do this well I would need board members, an attorney, and an accountant.  I’ve always believed our family’s remaining medical debt needs to be paid before I form a foundation. As I sat in the chemo chair several weeks ago I wrote a blind email to Healing Hearts Respite Foundation, the only non profit respite house in the Outer Banks, and I asked.  I asked if we could possibly use their smaller home as a place for some of the mothers to stay the week of the retreat. I asked if their mission was broad enough to allow donations to come through them for the house rental and other retreat expenses. I asked if I could know them and learn from them.

Exceeding, abundant above all I could have asked was the answer. The founding director of Healing Hearts let me know they had a much larger home available in the same community as their respite house, and they would like to offer it for the retreat. We had several phone conversations that grew our excitement for the possibilities this retreat holds. I chose a date. I bought the URL for this website and created this place. 

Option EDS (the retreat) was born. 
Not to us, but to His name be glory.  

This post was written for “The Heart” of the retreat website several weeks ago. I’ve wanted to move slowly and prayerfully as I shared with trusted friends and family. There has been a whispered lie telling me I need to have my “problems” cleaned up before I can live my way into this purpose. Since bearing my soul earlier this week God has showed up in texts, emails, phone calls, the mailbox and on my porch. He’s reminded me the most beautiful gifts come through our utter dependence on Him. It is not in spite of but because of my painful providence He has called me to this work.

Please join me in praying for this seed of a dream. Link over to the site. Follow us on social media. Stay tuned to the beautiful stories of the people behind this first retreat.  I have much more to tell you about our host partner, Healing Hearts, and how you can help.

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Kingdom Currency. Where Life is Found

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“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

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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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To Be Changed. Option B

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“This is freedom. This is the force of faith. Nobody gets what they want. Never again are you the same. The longing is to be pure. What you get is to be changed.”–Jorie Graham

I’ve logged in to write here dozens of times since my last post. The cursor blinks, but I can’t seem to shape my ongoing heartache into words.

It’s been a month since I drove myself to the doctor to have my staples removed. Each chunk of metal she pulled loosened a deeply embedded piece of sadness. I wept. My dear physician gently reminded me of where I’ve been. She’s seen me worse. We talked about my adrenal crises in the past after surgery and the ways my very real physical symptoms feed my anxiety. We spoke about the trauma and grief of another wounding.

I’d seen my counselor earlier in the week as well. For ten years pieces of the life I thought I’d live have been falling away. I’ve begged God for restoration. Some kind of “magical thinking” has prevailed. I’ve still believed I will heal, and I will be more well. I’ve imagined the surgeries would eventually stop and the progressive nature of my EDS and all the resulting conditions would be slowed. Over and over I’ve visualized my body becoming strong again.

I’ve talked of loosening my grip, surrendering my life and opening my heart to this hard, but I’ve never fully considered that almost everything I hoped and planned for is ‘impossible’ now. In the face of permanent physical disability I have to accept the reality of my limitations.Rebellion

The only gift I wanted for Mother’s Day was Sheryl Sandberg and Adam Grant’s new book Option B: Facing Adversity, Building Resilience and Finding Joy. It’s rocked my world. How did I miss this basic truth for so long?

Option A is no longer available.

I began writing on two sides of my journal. The left side is full of all the things my life used to be and the ones I hoped and prayed for the future. I crossed through almost every goal or dream. On the right side is Option B. I’m still staring at the mostly blank page. I’m sitting in this empty space. I’m waiting quietly. I’m praying the words of Calvin Miller,

“Teach me the wilderness simplicity. Help me to point to You, honestly and joyously, as the threshold of all that really matters.”

This is the force of faith. I get to be changed.

My Hope remains.
Option B

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When Hope Seems to Die.

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“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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Struck. A Team Danica-Monica Update. And a Giveaway

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Struck Like a Bell

I get the notification every day on my facebook feed. You have memories. Most of the time they include a blog post from the old Team Danica blog where I was much more faithful about writing for you. They also include status updates about pain, sickness, medical tests, treatments, surgeries and hospital stays. Either I am asking for prayer and support or thanking you for it.

I’m tired of our story.
I’m sure you must be too.

Danica’s healing since her surgery has been a miracle. You know I don’t use the word without understanding the full weight of it. Our joy in the excellent news during her visit to Hopkins several weeks ago and celebration of removing her neck brace has been tempered by my suffering.

After a random April snow last week I’m convinced spring is here to stay. I am wildly in love with the birds and blooms. I want to slosh in the mud and hunt all things new. I want to sit still and study the rebirth of dormant life. This is the season when my hope is made visible. It is also when my mast cell disorder explodes. My skyrocketing histamines raise my intracranial pressure in tandem. My already hurting head and accompanying symptoms are somehow worse on these pollen soaked sunshiny days than when the roller coaster barometer reeked havoc on my fluid filled brain. I forget this happens every year. Social media memories remind me.

It’s holy week. Danica has been sick with a fever and headache since Saturday and home with me. After Dan and Laney leave each morning we’ve been reading through the Old Testament prophecies and New Testament Gospel accounts of the days leading up to Christ’s death and resurrection. We aren’t at the foot of the cross yet, but we see the sadness of Jesus as He nears and hear His aching lament. It comforts me to know my fully God yet fully man Savior understands the cry of a heart that trusts my Heavenly Father but wails just the same.

Tonight I am crying out.

It’s been hard for me to read and write since my shunt failed. I have always said the pressure is the one part of my complicated diagnoses that I cannot live with. A year ago I was so desperate I wanted to die. After three failed LP shunts God directed me to a vascular neurosurgeon at the University of Virginia who had only recently begun seeing EDS patients and was brave enough to help us. The VP shunt he placed gave me complete and lasting relief for almost a year. I didn’t take a day of it for granted. No matter how broken the rest of my body is I most desire to be mentally and emotionally able to think clearly, read, write and learn and form and nurture relationships. When my pain and brain fog cloud these abilities I become frantic. I’ve come to terms with all the other loss and disability, but I beg God to leave the core of who He created me to be in tact. My habit of voracious reading comes to a snail’s pace when I am in this much pain and lose so much vision in my right eye. I edit my list of books and slog through the ones I most want to read. “Struck: One Christian’s Reflections on Encountering Death” by Russ Ramsey moved to the top of my stack.

I read it cover to cover in one sitting. Like always, I read with a pen to mark up the margins and a journal to copy words I needed to save. I have to admit there were points in his story I felt upset. All the things he was experiencing with one sudden diagnosis, surgery and recovery I’ve been through repeatedly. In the last ten years many people have begun a conversation or note or email with something like, “It’s nothing compared to what you are going though…what you’ve been through, but…” I cringe. Every time I cringe. Here’s the thing I always tell people who are going through different but no less hard things,“There is no monopoly on suffering.” Once I got past the self indulgent contrast between my life and his I began to gobble his experience seasoned with truths.

Days before I picked up “Struck” I’d read an article on Desiring God by Matthew Westerholm titled “Lament Like a Christian Hedonist: How Joy in God Bears Real Pain.” I book marked it and returned to it several times. I found comfort in the reminder it’s biblical and okay to wrestle hard with your hardships. It was this prepared soil the seeds of chapter fourteen fell.

Because the Lord often withholds explanation for our pain, we must not look at suffering as though it is some divine gimmick designed to teach us some important life lesson. That would make too little of the reality. God’s people do not walk through suffering toward the moral of the story. Rather, we walk toward the eternal presence of the Maker and Love of our souls, This I must remember…Suffering is not an event. It is a path…There are plenty of advisers out there who would counsel me to dress this up with positive thinking. But I do not think it would be honest to try to pad my experience with cleverly contrived optimism that denies what is true. My faith in Christ provides a deeper, truer way. I want to feel my sorrow. I want to walk in it. If the Lord walks there with me, what possible advantage could there be in conjuring any other way? No, I choose the road of suffering, and I pray for the courage to walk it honestly. The truth is my heart is broken. I need time to say as the psalmist said, ‘When I remember God, I moan, when I meditate my spirit faints.’ As part of my confession of faith, I need to say that I am not okay–not completely.

Tonight I am not okay. I can beat on the breast of my Father God, and He will hold me close and listen to every cry. “Though I continue to ask why, more often than not the question on my mind is ‘What’s Next?’ Sometimes He will answer, sometimes He will not. And I will again have to lean on what I know of who He is when I cannot make sense of what He allows.”

The God of the universe. The same God who sees Syria tonight. The same God who sat with my beloved friend this afternoon as she met her oncologist to see if her brutal cancer treatment is working. The same God who watched my sister and her family bury their dear Pops today. The same God who sits in the psych ward at the bedside of a fellow zebra’s husband who tried to take his life because he cannot bear to watch his wife and children suffer any longer. The same God who formed my Danica in my womb, fearfully and wonderfully, errant DNA and all and knows why she is running a fever for so long. The same God who sees my CSF logged brain and feels the bulging behind my right eye. He is good. He suffered hell for me. Love like that can be trusted with ALL THIS.

As I lay my throbbing head on a tear soaked pillow tonight I pray Russ’s song of lament:

Lord, You are with me. We walk through the valley of the shadow of death together. Since I do not know the way, I have no choice but to trust You. To trust You means I walk a steady path believing you are with me. The sound of my footfall echoes the two operative words you use to call me to the communion table–remember and proclaim. I remember that You are a Man of Sorrows, acquainted with grief, and I proclaim that I have no better guide. I have no better guide for two reasons: because You are God and because no one has stepped forward to lead me in a worthy manner. So I follow. What else can I do?

I haven’t asked for prayer lately.

I am tired of our story.
I’m sure you must be too.

But God is not tired. He does not grow weary or faint. Danica asked me to post something on facebook this afternoon when her fever spiked. Her childlike faith remembered your prayers for her miracle and wanted the same prayers for her sick body now. I was humbled. Won’t you please pray for her tonight? If she is still spiking by morning we will head to the children’s hospital. Please pray for my brain. I am terribly anxious about our trip to Charlottesville on Monday and my procedure Tuesday and what the next steps might be. I am terrified of a shunt revision. Please pray for Delaney. She is so sad about Dan and I leaving next week. She wants the joy of the sunshine and warm breeze to play as a song in our home instead of the dirge of sickness. Please pray for my Dan. He worked overtime this past Sunday offsite to help pay for another expensive medical trip, and he is working all week and then Saturday and Easter Sunday so he can take the days off to drive me to UVA. He is exhausted. He comes home to do laundry and dishes and look into the faces of a woman and children he loves desperately and wants to save somehow. Please pray for healing and provision and strength and Grace to do each next thing we think we cannot do.

Our Hope Remains.

What is your song of lament tonight?

I’m listening to Michael Gungor’s “Beautiful Things.”

I’m giving away a copy of “Struck: One Christian’s Reflections on Encountering Death”. Comment here on the blog or on social media with your heart cry by Sunday night. I will randomly choose a winner from the comments and send you a copy of this special book.

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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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Begin. One Word. A Team Monica Update

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BeginAgain
“Always we begin again.”–St. Benedict

I bought the beautiful hardback book “Every Day Sacred: A Woman’s Journey Home” by Sue Bender in January, 1996 at a Walden Books at the Valley Mall in Harrisonburg, Virginia. The simple rendering of the empty red bowl on the cover drew me in. My life was out of control. I was lost in my faith. Nothing seemed sacred anymore. As I flipped through the pages I saw lots of white space, rudimentary illustrations sketched in black and only a few words. I realize now that my life word, Dayenu, was being planted way back then. In Sue’s introduction she spoke of a begging bowl,

“All I knew about a begging bowl was that each day a monk goes out with an empty bowl in his hands. Whatever is placed in the bowl will be his nourishment for the day.

I didn’t know if I was the monk or the bowl or the things that would fill the bowl, or all three, but I trusted the words and the images completely.

At that moment I felt most like the empty bowl, waiting to be filled.”

BeggingBowl

Sue’s book became a treasure I’ve carried with me everywhere. There were more than a few times I could fit everything I owned into my powder blue two door Chevy Cavalier marked with the Grateful Dead dancing bears sticker on the back windshield. Somehow my Bible and this book were never lost in the fray of my vagabond life.

If you visit my home you will see little bowls everywhere. Some are sitting empty. Some hold a rock and a feather, a small cross or piece of sea glass. They are not all displayed at once. I rotate them in my decor. They tell a kind of story. In late November, 2003, the night before my brother Neculai died, I painted a rather large bowl at a pottery studio with my mom. I scratched the date and my initials on the bottom. It’s now a deeply emotional space. I brought it out on my kitchen counter the week of Thanksgiving, a holiday that will always be tempered by sudden loss. Every time I’ve passed it since returning from Danica’s surgery in Baltimore I get a lump in my throat. I knew my word for 2017 was somewhere in the hollow of the simple blue glaze.

Since my own complicated fusion in October I’ve been the monk begging, the empty bowl waiting to be filled and the sacrifice filling the bowl for someone else.

I first heard the poem “The Singing Bowl” by Malcolm Guite at the opening of The High Calling retreat at Laity Lodge in November, 2014. I scribbled down the words in my blank Moleskine. Later that night in the silence of my room I read them over again and again. Each stanza was emptying my heart for every sacred thing I would receive in that hallowed place. There was no internet access in our rooms. I desperately wanted to google Malcolm and find his work. Sitting quietly with the scrawled letters in my own handwriting was gift. Before every session that weekend I opened my green notebook and read them again. Waiting at the San Antonio airport a few days later, finally with Wi-Fi, I found his book of poetry by the same title and ordered it.

Begin the song exactly where you are,
Remain within the world of which you’re made.
Call nothing common in the earth or air,

Accept it all and let it be for good.
Start with the very breath you breathe in now,
This moment’s pulse, this rhythm in your blood

And listen to it, ringing soft and low.
Stay with the music, words will come in time.
Slow down your breathing. Keep it deep and slow.

Become an open singing-bowl, whose chime
Is richness rising out of emptiness,
And timelessness resounding into time.

And when the heart is full of quietness
Begin the song exactly where you are.

My word for 2017:
BEGIN.

DesertSun

God made a way for me to take a solitary trip to Tucson last week. It was something I’d prayed for and desperately needed. In this world of constant sharing I wanted to keep it quietly tucked inside my hurting heart. It was everything I’d hoped and more. After spiritual famine and astigmatism I could taste and see good again. Tuesday morning I sat at the airport waiting to return home with absolutely no pain. Zero. No headache. No neck pain. No joint pain. No cardiac symptoms. No burning and stabbing needles in my feet. No mast cell attacks sitting near people with all kinds of scents. I was well. I filled my journal pages with gratitude for the body and spirit healing. I wrote about the things I long to do in this new year, specifically a dream I’ve had for some time to host a retreat for young zebra women in Arizona. I want to offer them respite from their medical lives, encouragement in community together and a few days of knowing there is a beautiful place where they could feel some better. I made important contacts and explored locations moving the idea into real planning. I was hopeful and excited.

ZonaMKS

My travel home included flights from Tucson to Chicago and then on to Akron/Canton. A little over two hours into the first flight the captain alerted us there were extreme storms around Chicago and no flights were being allowed to land so we would hang out at a high elevation circling above Nebraska and Iowa and hope things improved. An hour later he let us know we would have a very uncomfortable landing in Milwaukee through turbulent weather. It was during this descent and pressure change I experienced an ice pick pain in the right side of my head, loss of hearing in my right ear and fluid leaking from it. We sat on the plane in Milwaukee waiting for some kind of small window in the Doppler radar to make it into Chicago. Almost all of us on a large packed flight were making connections there. Suddenly we were ascending quickly and descending again through lightning and pouring rain at O’Hare. The airport was in total chaos. Every passenger needed to be booked on new flights for the next day. I stumbled off the jet way and began to cry.

With each new surgery I’ve been increasingly afraid to do things alone. I had to work through this doubt before I committed to the Arizona trip. I’ve felt more and more of myself being swallowed by disability. I’ve found myself resenting my broken body as an enemy instead of caring for it as a temple of the Holy Spirit. I used to be a seasoned solo traveler. In the past I’d have been frustrated by the inconvenience of an unplanned night in Chicago, but I would have jumped on the Marriott app and found a room, hailed a taxi and adjusted my sails. Instead, I felt like a lost and injured child. It wasn’t just the circumstances upsetting me. I was instantly questioning my theology and belief in everything I’d just been grateful for. Thousands of people were being affected by the weather. Of course God was doing things providentially in many hearts and lives through this maddening detour. My myopic view left me sobbing in a wheelchair by the baggage claim holding the howling shunt side of my head in my hands.

The first time I ever spoke of the desire to host a zebra retreat was with my friend Christy who lives just outside Chicago. I knew her from Chiari and EDS support groups on Facebook for several years before she went out of her way on a particularly difficult day of her own tests and appointments in Maryland to visit me during a long and lonely hospitalization for my initial AE/PANS/PANDAS treatment. We are kindred. Since meeting three years ago we have written many #pentopaper cards and notes and letters, emailed, texted and talked on the phone. Both our lives are impossibly knotted. We’ve longed to see one another again face to face, but it’s never happened. Tuesday night I texted her without hesitation, and she jumped at the strange and stressful opportunity to show me hospitality. She arranged for a car to pick me up and came out to the driveway to greet the mess that I was with an umbrella and a smile. It was late. Her husband and girls were in bed. She was reeling from a challenging and emotional week away for invasive diagnostic tests in Georgia. Everything about me showing up in the middle of the night was inconvenient. Sitting across the table in her warm and cozy kitchen with a cup of hot tea sharing hearts for hours…falling into the most comfortable guest bed with silky linens and perfectly plump pillows…waking to her beautiful face shining Jesus the next morning was God giving me a glimpse of His purpose for this detour in my life.

Since returning home Wednesday afternoon I’ve continued to experience intense intracranial pressure. Other symptoms that accompany this pain are also constant. My amazing miracle VP brain shunt is not working properly. Tomorrow my dad will drive me to Charlottesville, Virginia for a Monday scan and appointment with the University of Virginia vascular neurosurgeon who placed my shunt last April. I am undone. I begged God for a year without surgery. It was difficult to leave my family for the time in Arizona. Leaving them tomorrow is crushing. We are so close to Danica’s trip back to Baltimore to see her fusion and meet with her neurosurgeon. I don’t understand.

The rule of St. Benedict, “Always we begin again,” reminds me of fresh starts in Jesus. It invites a trust for my daily bread and the strength and Grace to move through time and space with exactly what is given to me. It encourages me in my Dayenu life of always enough. Chronic illness and daily suffering have a way of emptying over and over. Rising each morning asking God what He wants to do through this brokenness is a part of healing but never being healed. I am a beggar, aware of my need and completely dependent on His love. My life is an offering.

I can’t tell you what new thing He is doing in this pain, but I believe. I have to believe.

“‘Don’t be afraid, I’ve redeemed you. I’ve called your name. You’re mine. When you’re in over your head, I’ll be there with you. When you’re in rough waters, you will not go down. When you’re between a rock and a hard place, it won’t be a dead end. Because I am God, your personal God, your Savior. I paid a huge price for you’…This is what God says,…’Forget about what’s happened; don’t keep going over old history. Be alert, be present. I’m about to do something brand-new. It’s bursting out! Don’t you see it? There it is! I’m making a road through the desert, rivers in the badlands.'”–Isaiah 43:1-3, 18-19, The Message

This is my heart song tonight. Soli Deo Gloria.

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Bloom. A Team Danica Update and 2012 Repost

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Danica6weeks

Six weeks ago Danica was coming out of huge brain and spine surgery and getting settled in the PICU at Johns Hopkins Medical Center in Baltimore, Maryland. If you’d been there and whispered in my ear that she would be home today doing math and language homework, playing Legos and breezing through an OT evaluation, I wouldn’t have believed you. If you’d told me the first weeks post-op would be the greatest test of physical, emotional and spiritual endurance we’ve ever experienced, but, if we held on, it would become the most miraculous part of our Gauntlet story yet, I wouldn’t have believed you.

It’s true.

The healing.

The absence of pain.

The hope.

The miracle.

It’s true.

Six weeks later it’s all true.

Twelve weeks ago I was coming out of a major spinal surgery at Doctor’s Community Hospital in Lanham, Maryland. If you’d come along side my bed while I was struggling for oxygen and writhing in pain and told me I would survive the trauma of the next three months, I wouldn’t have believed you. If you’d told me God would not only meet every single need but lavish love on us in ways we never could have asked or thought, I wouldn’t have believed you. If you’d told me I would have the greatest hope for my Danica’s life and perhaps even my own, I wouldn’t have believed you.

It’s true.

The provision.

The love.

The hope.

The miracle.

It’s true.

Twelve weeks later it’s all true.

I’ve been a ‘One Word’ person for a long time now. I began writing about my 2017 word last night. ‘Bloom’ was the runner up. I didn’t remember the following post from the old Team Danica blog, written on January 4th, 2012, until it popped up on my facebook memory feed this afternoon.

Tomorrow I have a meeting at Lake Center Christian School with Danica’s teachers, guidance counselor, special needs coordinator and principal to revise her 504 plan so she can return to school for half days next Monday. She will use the wheelchair initially to protect her fusion and her healing rib graft. I know she is ready and trust she will be safe and loved, but I am facing my own ache of letting her go. I’m facing the great mother “risk” so my girl can blossom again.

Getting readypschool
“And the day came when the risk to remain tight in a bud was more painful than the risk it took to blossom.”–Anais Nin

My dear friend Angie facebooked this quote to me today. It’s not strange that her kindred heart would know this is the very quote I was thinking of this morning as we walked our Danica Jean in the doors of Lake Center Christian School for her first morning of preschool.

It’s all been a risk with this child. The pregnancy was high risk for her and especially for me. Her birth was an emergency and very dangerous. The methods we tried to fix her tortocollis and find the real root of her pain and growing diabilities were risks. The many exposures to radiation were a risk. The first brain decompression was so scary. At her age we knew going in the outcomes were mostly just buying time. Just a few months later we began the fight to find answers anywhere we could because the first surgery was already failing. This led us eventually to her second surgery and fusion. It was riskiest of all. No one wanted to do this surgery although all the experts agreed it needed to be done. Every day after October 5, 2010 EVERYTHING became risk analysis. For more than a year we kept Danica from doing almost anything normal three year olds would do. We said “No”, “Be careful”, “Watch out”, “Hold my hand” and the words “We have to keep your neck and brain safe” more times than I could ever count. Have you seen her beautiful white swan neck? Have you? Do you believe in miracles? Have you ever witnessed one? Have you ever lived one?

Danica had many dreams of her own as she patiently waited in this bud of hope all these years. Attending preschool is one that fell right under her Disney wish trip. She is exceptionally bright and more than ready for this social interaction, time away from her mommy and lots of learning and exploring. We are beyond blessed she is able to begin it at such a special place where so many of the school families have been praying for her for years, following her story and loving us well. Danica is like a hero there. Everyone knows her face and name. My mom’s office is just across the hall from her room too. It’s pretty amazing to have your grandma be your principal!

This cold January morning was a day we will never forget because our family got up TOGETHER. Danica excitedly got dressed and was bursting at the seams with anticipation to bloom. She had no anxiety at all. She has lived in a world of adults and scary machines and pain and limitations. This day was not tapping into courage at all. It was only joy for her.

Hanging up stuff

We went in. Danica hung up her coat and bag in the little foyer area, and she signed herself in on the board. The other children were ready for her. Mrs. Barber, her teacher, was waiting with open arms. There was no look back to me for any reassurance. She was gone in a second to wash her hands and choose an activity. Dan and I stepped out of the door, and I let a few tears fall. Mrs. Pappano was just outside. She gave me a hug and reminded me how everyone there already loved Danica and would take such good care of her.

Signing in

Danicaand MrsBarber

I was supposed to begin physical therapy this morning, but there was some mix up with the prescriptions getting faxed over so instead Dan and I went to breakfast. He brought me back here to the lake house, and we snuggled for a little while which is such a rare treat. I can still smell him, and it makes me feel less alone. As soon as Danica left at 11:30 Danica’s teacher emailed me to share what a success today was and how Danica instantly blended in. She said they had a large motor skill activity that would be on Danica’s restriction list and Danica was sweetly compliant to sit out. I loved knowing especially they were taking her safety seriously and understanding the limitations that remain. I called Danica at home to talk to her about her morning, and Dan said she got home and said, “We need to take naps!” She had gone in her room to take some down time already. This is so Danica. She takes rest when she needs it. She is in many ways so much wiser than her age. She is a rare flower.

Last night I stayed at home and tucked each of the girls in like normal since Dan is working nights for the next month on her preschool days. Danica fell asleep in five minutes as “Sleep Sound in Jesus” played, and I rubbed her back and sniffed her sweetness. I lingered. Then I made my way across the hall to my Laney. She had so much new art to show me and we talked about print making and how her designs of colors and patterns could be used in fabric or wallpaper and other ways, expanding her understanding of how art could be her career. She talked and talked to me, trying to catch me up on the weeks I’ve missed, and then she said, “I’m sorry I’m so chatty tonight. I just missed you.” Oh, special girl of mine, me too. So much. We hugged and prayed and then I slipped out to my own bed. I cried. It’s going to be okay. There are so many more blossomings in our coming year. I know it. Thank you, God.

I’ve been working on my “vision board” for 2012. It’s like the quarterly collages I make only on a much larger scale. I found a picture of bulbs coming up through a late spring snow. I have this quote beside it,

“Underneath the drifts, seeds are waiting. Their courage is incomparable. Their patience unequaled. Hunkered down and hopeful, they sit out the frozen tundra, knowing and trusting that spring eventually will arrive. If ever you feel unsteady in the face of life’s winters, consider seeds and their faith.”–Tovah Martin

Spring always comes. Today was a little taste of how seeds of faith and patient waiting on God always bloom into something beautiful.

“Those who sow with tears will reap with songs of joy. Those who go out weeping, carrying seed to sow, will return with songs of joy, carrying sheaves with them.”–Psalm 126:5-6

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