Archive of ‘Book Reviews’ category

The Thorn. Keep Bleeding. Turn it into Love

by

Gracelacedcover

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

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

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

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

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

Gracelaced4

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

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

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

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

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

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

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

I’m weak. I’m poor. I’m humbled.

I’ve been meditating on I Peter 5:10:

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

Restore. Confirm. Strengthen. Establish.

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

Our Hope remains.

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

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

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

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

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

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

Gracelaced1

 

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Kingdom Currency. Where Life is Found

by

FamilyCorolla

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

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

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

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

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

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

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

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

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

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

Tim ends the devotional with this prayer:

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

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

Kingdom currency.

This is where life is found.  

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

Photo by Audra at 12th Street Portraits

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To Be Changed. Option B

by

Option B Close
“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.

by

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

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

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

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

Nothing.

I’ve been completely undone.

I’ve wept buckets of tears.

I’ve hidden in shame.

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

I am not okay.

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

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

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

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

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

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

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

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

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

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

by

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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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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A Bruised Reed and The Broken Way. A Team Danica Update

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ICUBrave

I’m sitting in a hospital recliner facing my Danica’s bed in the PICU at Johns Hopkins Children’s Center. She is resting comfortably, but I don’t want her to open her eyes and not see me here. She was in surgery for over six hours today. Just before 8 am I followed the anesthesia team into the huge operating room to hold her sweet hand. She looked up at the many masked faces and back to mine, and she began to cry until she breathed enough gas for her to drift off. In that moment my brave broke into a thousand pieces. I came out to hug Dan and see my dad and mom who were in the family waiting room, and I began to cry too. The doctors said the first update would come in an hour or so. It would take that long to place all her lines, prep her and get the initial imaging done before the first incision. I needed coffee and a distraction. Dan and I went right away so we could hurry back up to wait as closely as we could to our girl.

I stopped at the chapel alone.

Kneeling in the empty, dark and perfectly quiet room I prayed.

I’ve been reading Ann Voskamp’s new book The Broken Way the past six weeks. I’ve had to take it in bite size pieces, because I am a bruised reed. I’ve been feeling like a sham…saying the “right” things about hope and healing in the light while secretly covering a spreading hematoma of doubt, fear and even anger. The leaking has gone deeper than the surface tissue. It’s become a blood clot in the main artery to my spiritual heart. I’m not just bruised. I’m broken.

This morning in the make shift sacred space, prostrate before the good God I’d been forgetting in my pain and my daughter’s suffering, I took a ragged breath of Grace, and the oxygen of Jesus fanned the smoldering wick back into a tiny flame. The blockage cleared in the yielding.

Ann’s words underlined, copied on a note card and carried with me in the Bible I’ve struggled to read echoed in my mind.

“What happens if you just let the brokenness keep coming? Surrender. Let the wave of it all break over you and wash you up at the foot of the cross. What if I lived like I believed it: Never be afraid of broken things–because Christ is redeeming everything.“

I am cracked open yes but not trampled. With my head on the ground the Spirit ministered with the truth from Psalm 34:18. “The Lord is near to the broken-hearted, and saves the crushed in spirit.” Gently Jesus splints my snapped soul with bandages of compassion.

Broken

Danica’s surgery went well. Exceeding, abundantly above all we could ask or think. The details are amazing. The “Gauntlet” bringing us here may even be a gift. I haven’t given up on that yet.

“The fellowship of the suffering believe that suffering is a gift He entrusts to us, and He can be trusted to make this suffering into a gift. The fellowship of the broken take up the fearless broken way, are not afraid of brokenness, and don’t need to try to fix anyone’s brokenness, or try to hide it or mask it or judge it or exile it…Never be afraid of broken things–because Christ is redeeming everything.“

Thank you for being part of the “fellowship of the broken.” You were praying us into today, through today and will continue in the coming hard days of recovery. Thank you for being the given in our need. Our Hope remains.

I’m quietly playing the achingly beautiful song “Image of God” sung by Christa Wells and Nicole Witt. Still your heart. Close your eyes and listen. Play it again.

Dan, Danica and I attended an intimate concert with Christa along with Jess Ray and Taylor Leonhardt the week before we headed here for surgery. It was soul food for us all.

Christa Wells

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Imperfect Birds. A Team Danica-Monica Update

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Imperfect Birds
“What does the title “Imperfect Birds” mean?

It’s a line from a poem by Rumi. The line is ‘Each must enter the nest made by the other imperfect birds’, and it’s really about how these kind of scraggly, raggedy nests that are our lives are the sanctuary for other people to step into, and that if you want to see the divine, you really step into the absolute ordinary. When you’re at your absolutely most lost and dejected … where do you go? You go to the nests left by other imperfect birds, you find other people who’ve gone through it. You find the few people you can talk to about it.”–Anne Lamott, from Writer’s Digest May/June 2010

We made it. Danica is tucked in bed next to me in a room at The Believe in Tomorrow House in Baltimore Maryland. We can see the Charlotte R. Bloomberg Children’s Center at Johns Hopkins from our second floor window. She and I flew from Akron-Canton into Reagan National yesterday. Dan and Delaney drove the turnpike and timed it perfectly to swing by the airport, pick us up and drive to Baltimore. We had a good family night at a hotel near the inner harbor. We were able to meet up with some of Dan’s Maryland family earlier today, and Laney left to spend a few days with her aunt and uncle and cousins here.

This evening we had a beautiful meal prepared by a mother and her daughters who choose to come once a month and feed the parents and children staying here. (If you are a family with healthy kids who need a little perspective find a local Ronald McDonald House or something similar and volunteer there. You will walk away grateful and inspired.) Danica was so excited for the homemade ziti to come out of the oven. Our room is right off the kitchen. I was already in my pajamas. A woman I’d briefly met earlier in the afternoon was waiting too. She began to ask about why we are here and about Danica’s surgery. My throat was sore, and I was beyond tired. In my head I was thinking, “I just can’t tell our story right now, and I certainly can’t ask you about yours.” But I did. If you know me you understand this is where I believe the “thousand things” are happening. This woman is from Seattle and here alone with her fifteen year old son. He is in the hospital on a ventilator. He got a simple cold virus that spread to his spinal cord…something like polio. It paralyzed him from the neck down. They expect to be here several months at least. She was hungry for someone to listen. I leaned in. As different as our children’s medical conditions are and the reasons we are here we are much the same. Our conversation moved through the issues we face and the emotions behind them. This is the real beauty of respite homes like this. They not only ease the financial burden of hotels with a minimal fee, but they offer close proximity to the hospital, home cooked meals, laundry and places for the kids to relax besides your room. Most of all they offer a community of others who are looking for a nest as imperfect as their own where they can rest awhile. Lying here in the dark I’m worn so thin you could see straight through me. I’ve been following Danica’s lead. Her courage amazes me. I’m being more careful about showing my fear and sadness around her the closer we get to Wednesday. I didn’t realize how badly I needed to rest in this woman’s messy nest too.

Some of my dearest friends are mothers of children who have Ehlers-Danlos and Chiari. They are waging their own health battles and having surgeries while searching for the best care and fighting for the most whole life for their loves. We are spread across the United States. Our lives intersect in person occasionally at the same hospitals or doctor’s offices while traveling to see the few experts who understand these complex diagnoses. Most of the time we support one another online. We have private message boards and email and text. We mail #pentopaper and care packages. We laugh and we cry about the specific brand of hard we’ve been given. We are one another’s life saving pit crew. We are one another’s heroes. Jodi Picoult wrote in Second Glances:

“Heroes don’t leap tall buildings or stop bullets with an outstretched hand; they don’t wear boots and capes. They bled, and they bruised, and their superpowers were as simple as listening, or loving. Heroes were ordinary people who knew that even if their own lives were impossibly knotted, they could untangle someone else’s. And maybe that one act could lead someone to rescue you right back.”

As Danica and I were closing up the house to leave yesterday I walked Twixie one last time and peeked in the mailbox. Our mail was supposed to stop Wednesday, but apparently the postal carrier hadn’t gotten the message yet. I was meant to get the letters waiting there. There was wisdom and encouragement from my ninety-four year old grandmother, a beautiful card from my older sister, a letter from a younger hero I adore and precious words from a kindred friend I met at The High Calling Retreat two years ago. Cindee and her children were just being diagnosed with EDS and Dysautonomia, several of the many comorbid conditions we share. I’d been baptized by the fire for years. God brought us to the Texas hill country to sit in one another’s nests for awhile. Since our meeting she’s co-founded Chronic Joy, non profit ministry whose mission is: “Radical hope. Compassionate change. Equipping those affected by chronic physical and mental illness through community and education rooted in Jesus Christ.” She wrote and published Discovering Hope, a beautiful handbook for those who are suffering from chronic illness and the people who love them. I was humbled to write the foreword to this book. Her letter sits with me now as I hide in the tiny bathroom to find some light.

“I ache for your weariness…for your mama heart that has to be strong for your little that is going through so much and longs to salve, solve, shield, comfort, cheer lead, encourage and love on, yet alternately has to endure, cajole, persuade, swallow down, smile through the pain…I have no easy words, no quick solution, because we both know those fell away long, long ago. So I lift you up on the wings of prayer and hold you close and write these books, design the images, follow the call of this ministry for US, for our precious kids…because it matters, because WE matter. Every heartbeat. Every moment. Every breath…”

Danica will have an invasive test called a CT myelogram tomorrow. She will be under anesthesia and have dye injected into her spinal cord to give the surgeons the best image of the drain stuck in the fourth ventricle of her brain. Dan and I will give her up to strangers and let them take her away while we sit and wait and pray. Please pray with us. The risk of a spinal fluid leak is real. I’ve had a leak after a lumbar puncture producing the worst headache of my life. Please pray she will have peace as we get her settled and come out safely and more confident about Wednesday because of making it through this difficult procedure.

To all the imperfect birds who have invited me into your nest or come to sit in mine, I thank God for you. I pray circles around you and your families. You make me braver.

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Just Show Up. Part One. A Team Danica-Monica Update

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Galveston angel
“Nurturing friendships is hard enough when everyone is healthy. But when you show up and do the work of being a friend to someone who is suffering, it will cost you something. In other words, you’re going to have to sacrifice your comfort, your schedule and maybe even aspects of your faith.”–Kara Tippetts

We are three days in, and it’s already been a week of hard. Monday I had my stitches removed. If you are a facebook friend I’m sure you cringed at my “over sharing” photo. (Please remember that at least half my “friends” are people who are walking through similar surgeries and recoveries. We celebrate healing no matter how gnarly, and our wounds are truly the places where light filters to our souls.) During the same visit Danica had her pre-op labs drawn and other tests for screening. Her last needle experience in Cincinnati was brutal with several failed IV attempts for a CT with contrast. She was anxious. As much as we talked about how this blood draw was a quick stick with no straw and a much smaller needle she lost her courage when it came time. Both of us showed our needle PTSD. It was ugly. It took the doctor, two nurses and myself to hold her down to try to get a stick, but she jerked, and we missed. She was sobbing. I was sobbing. I left the room for a minute to tell God He got this all wrong. “I CAN’T WATCH HER SUFFER AGAIN.” I was really thinking how impossible this was going to be. We are headed for brain and spinal surgery, and we can’t get through a needle stick. I came back in and moved from the completely understanding and comforting ally to get tougher on her. We had to get through this. We switched to the other arm, held her at four corners, and I began to pray over her. “Jesus, Calm Danica’s heart. Help us stick this vein.” We got it. On our way out our dear doctor hugged us both. She knows how fragile I am from my recent surgery. She’s walked the long road with me for over six years. She knows how impossible all this seems, especially right now. Her hug validated all those things and then said, “You can do this!”

Afterward my dad took us to Chic-fil-A and then to Danica’s special hair appointment where she had the underneath of her head shaved and a purple stripe added for Chiari. It was sad and fun all at the same time. Every step makes November 30th more real. We are all feeling the weight of it.

I had my every six week maintenance chemo drip yesterday. It was painful to sit in the chair for over eight hours with my neck in such spasm. By mid bag I begin to feel oh so sick and the deep bone ache began from the inside out. Last night I was exhausted but could not sleep because of the steroids, the hurt and how sick my tummy gets. I was up and down, up and down…finally I gave up trying to rest. Around 4 am I slipped out to the cold, dark living room and picked up the book “Just Show Up: The Dance of Walking Through Suffering Together” by dear Kara Tippetts and her friend Jill Lynn Buteyn. My friend Kristin had given it to me in January of this year. At the time I skimmed and shelved it. I brought it out to read at chemo but didn’t have the energy. I finally read it cover to cover this morning with a pen and a highlighter. I got out old school college ruled notebook paper and wrote Kristin a long letter stained with some tears.

Kristin and I

Kristin is my friend from Denver who first loved us when she heard God telling her to “Drain it.” (If you’ve never heard this story before you’ve got to read it!) We worked remotely for the same company based in Northern Virginia. I’d only briefly met her twice face to face when I’d traveled to Virginia for work functions and a third time when she came to visit me after one of my surgeries in Maryland before she moved to Colorado. I often say we are the least likely of friends. We are different in many ways. All my life I’d found friends who were almost mirror images of myself. This was someone I could learn from in a whole new way. We became close. She became the person who made me laugh out loud when no one else could. She allowed just enough whining before kicking my butt with the perfect amount of tough love. Even though we live very far from one another she has consistently found ways to “show up” for my family and I. Last October we took a very special girl’s trip to Galveston, TX to celebrate me turing forty. It was the first time we’d spent quality time together in the flesh. We shared hearts. I learned more about her walks with a former fiance’ and her dad who both fought and lost cancer wars. I understood more about how she knew what so many people simply can’t when it comes to loving someone in chronic suffering. When I found out about my emergency surgery she immediately called and said she was coming. She flew to spend a week with me in the hotel after my hospital discharge. It wasn’t easy for her to find care for her children or for her husband to handle all the details while she was gone. He told her “Go be the hands and feet.” (Seriously, this guy lets her obey God and “drain it” and now this. Corey, you are Jesus in skin.)

Kristin hasn’t been feeling well for some time. It’s strange how long and hard we have to look to find what becomes glaring when it’s finally seen. I hugged her in the parking lot of the Dulles Virginia Residence Inn on October 28th as the sun began to rise. She flew home and went to a doctor’s appointment on Monday to explore a lump. Two days later she had a CT that screamed malignant tumor. A week later she had a biopsy that named it. She has cancer. Big cancer. I checked flights to Denver. I wanted to go so badly, if only to ring her doorbell and hug her again. Neck healing be damned. I should have hugged her harder and longer.

This giving and receiving thing still seems so complicated to me. I’m proud. After all this time, I still really want to become independent again. I want to pay all our debt on our own merit. I want to go back to work and save the day. I want to disappear off this screen and be a person who shows up in flesh and blood for others. I want to bring you dinner, or clean your bathroom or fly across the United States to care for you post-op. But I can barely put my own socks on. I can’t drive now and maybe never will again. I’m disabled in all the ways I think the world needs me…in all the ways you, my friends and family, need me. I’m humbled over and over again. I even fight it with my own parents. I fight it with my husband and my children. They see me wincing through a smile. They see me faking it but hear me saying I’m not. I want to find my worth again in their lives too. Everything in this world screams this is by doing. What if you can’t do? What if you can only be?

Like Kara Tippetts I’d like to be known as a “keeper and grower of friendships, a tender nurturer of those around” me even in my suffering. Stripped of all the trappings of what I do for a living, where I live, what I wear or plans for any future I am left with a worn chair in the corner of a living room where I sit and read and write and pray. I pray circles. I mail words. I pray circles. I’d like to believe this is a kind of showing up too…a kind of giving. I’d like to believe BEING in Jesus really is enough. There’s my word again. Dayenu. More than enough.

Kara was dying as she finished writing “Just Show Up.” The way she lived and died impacted the hearts and lives of thousands and thousands of people because she wasn’t afraid of the one thing that remains when everything else falls away. She wasn’t afraid of community. She wasn’t afraid to give and receive. Some of her last written words were these:

“Friends, Community. It is the only way to know and be known. It’s where we see our own humanity and frailty, our gifts and our weaknesses. When we show up for one another, we invade each other in love and become witnesses to the truth that trials and sickness and pain are not the whole story. There’s more. So much more. We can remind one another that our lives are not a mistake. And, most importantly, that we are loved with an everlasting love.”

I’m four weeks out from surgery today. Two weeks away from my baby girl’s huge operation. I am healing slowly. Anything I do jeopardizes what we just tried to accomplish. This surgery can’t be repeated. It HAS to be the last time inside my cervical spine. I HAVE to find a way to ask for and receive specific help. I spent a lot of time in bed on heat after Dan and the girls left for work and school. Chemo recovery day is hard. I still had many phone calls and follow ups to accomplish. And my lists of things to do in the next week and a half before we leave for Baltimore seemed to grow longer not shorter. Around 1 pm I got up to make my family their favorite chicken casserole. It sounds simple, right? I reached down for the large Corning Ware dish. I reached down for the heavy Calphalon pan to boil the water for the stuffing. I bent over to put the chicken in the big pan in the oven. I reached up to get a mixing bowl for the sour cream and soup mixture. I leaned back down to get the chicken out of the oven and then cut it in little pieces. I lifted the large bowl to dump the ingredients and mix them. I lifted the stuffing pan and my wrist slipped out of joint as I scattered the stuffing on top. What if this one meal…this one personal act of love and assertion of independence ruined something? My neck was screaming. Now there were dirty dishes. The dishwasher was full and clean. This is rare. Usually Dan runs it each night and empties it each morning. I have no business reaching in and out of a dishwasher ever. But I did. Doesn’t a sink full of dirty pots and pans and a full dishwasher negate the encouragement I was trying to give by making the meal? So I emptied it.

My girls came home. Danica had homework to make up from Monday. She had a lovely gift bag from a teacher at school. We went through the things. Of course I needed to find a journal to begin a list of gratitude. The mail came. There was a box from my dear friend in Wisconsin with things for Danica. We went through the things. My body was howling, but I kept a cheerful face and spirit for my girl. We added the gifts to the gratitude journal. I took the cardboard to the recycling bin in the garage and sat down to wail.

I need help. We need help. I’ve pushed your offers away, because I wanted to do these weeks cozied here as a family. I did work on a list of specific ways you can help during and after Danica’s surgery, but I kind’ve wanted to keep you out of this part. It’s ugly. I’m ugly. I’m in full on lament. I realized this afternoon I cannot even pack for this kind of trip. I need help.

I got on my knees and with no head bowing ever again I prayed for God to help me ask and receive. I begged Him to help me be honest and detailed about how others can help and trust Him to fill the slots.

The next post will be this ask. Humbly, I will ask you to “just show up.”

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Still Walking. A Team Danica-Monica Update

by

At home
I still walk.
Doctors, looking
down at me, say
YOUR SPINE IS DISINTEGRATING,
STAY IN THE WHEELCHAIR OR ELSE.
Or else what? I’ll never walk again?
Never stand up? Of that
I am not afraid.
I am afraid
of sitting down
for the last time.

So,
I still walk at home.
Unlock the door,
wheel inside, then
up:
My remembered feet
on the cool slate,
My gaze straight into Gran’s painted eyes.
Someday, I will have to look up
to remember…
or take her down with me.

For now
I still walk at home.
Nothing fast, nothing fancy,
Nothing but one foot in front of the other,
Which is everything, really,
Everything if you appreciate
the shift of weight from heel
to toe, the way your arches
sigh into the carpet, and
the small dance that happens
when you just stand still.–Lynn Goldfarb

I searched for a stock image of a younger person using a walker. One in a medical institution would have worked, but I really wanted one outdoors, maybe a young woman like me walking in the sun and leaves. There were hundreds of photos of older people with someone caring beside them helping them take each next step. There were no photos of a forty year old wife and mama gripping a metal support with wheels praying each step will take her closer to restoration.

In a way it’s sad I don’t write much during the several weeks between major surgeries and days like today when the fog begins to clear, and I’m able to process the pain and grief I’ve endured. I know I’ve lost wise things, and I’m sure I’ve buried others. This is how we survive any recurring trauma isn’t it?

Twenty-four. It’s a lot of anything. It’s a crazy amount of wounding.

I felt afraid. This terror was new and different. Fear is rarely part of these operations anymore. My pain becomes a place I’d rather die than keep living. I get a scan, see the new damage and mark the date on a calendar. I don’t ask myself how many patch jobs we can do before my spine disintegrates. This time as I woke from anesthesia I wondered if we’d gone too far. I had oxygen, but I couldn’t breathe. If I stayed awake I could make myself take breaths, but I was under the plastic bag of too many drugs. I just wanted to sleep. Every time I fell asleep I stopped breathing. An alarm would sound. I’d jerk awake. The nurse would remind me, “BREATHE.”

There was something about the way my body was positioned during this surgery that completely ruined my hips. The op notes are vague. I know part of the pain and inability to walk alone was from the bone marrow aspiration from my right hip. Once we moved to the hotel my sister and sister-in-law would help me to the bathroom. I felt my legs dragging behind me as I held onto the walker for dear life. There were burgundy stripes in the hotel floor, and they became like little mile markers for my marathon.

I’m grateful for hard fought battles won. I’m thankful for the scars, new and old alike. They are my beauty marks.

I won’t JUST sit in a chair.
Not even my “nest” chair.
I will put one foot in front of another.
Which is everything really.
It’s everything.

Presurg

Postsurg

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