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.
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.
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.
There is a poem titled “The Invitation” by Oriah Mountain Dreamer. (Totally made up name or hippie parents!) I have loved it since college and lean into the last few stanzas over and over again,
” . . .It doesn’t interest me
to know where you live
or how much money you have.
I want to know if you can get up
after the night of grief and despair
weary and bruised to the bone
and do what needs to be done
to feed the children.
It doesn’t interest me
who you know
or how you came to be here.
I want to know if you will stand
in the centre of the fire
and not shrink back.
It doesn’t interest me
where or what or with whom
you have studied.
I want to know
what sustains you
from the inside
when all else falls away. . .”
Everything is packed. Danica is tucked in her own cozy bed for the last time before we step out the door into the unknown. We prayed with our fingers laced together and tears running down my face. “God, bring us back here to this place.” I told her how I take a mental picture of my bed and my room in my sanctuary, and it becomes the thing I fight to get back to when I am in the hospital or hotel after. When I think I’m too far into the pain or the trauma of all these trips and all these surgeries I think of home.
I am weary and bruised to the bone. My recovery has been slow. I know the stress of the fire we are headed into is part of the reason my body has resisted rest and healing. My cervical spine continues to spasm, but the searing pain is below my fusion rod in the thoracic spine. It is learning to hold my body and sustain all the movement I need.
Our entire family has moved back to survival mode. This is something we know. We understand these relationships are built on something stronger than good days. We have loved one another through very hard times before. As we move towards Danica’s surgery on Wednesday morning EVERYTHING ELSE FALLS AWAY. What will sustain us THIS time?
I read these beloved verses from Deuteronomy this morning. “This day I call heaven and earth as witnesses against you that I have set before you life and death, blessings and curses. Now CHOOSE LIFE, so that you and your children may live and that you may love the LORD your God, listen to his voice, and hold fast to him. For the LORD is your life.” My heart was hard and there was a root of bitterness. This powerful message dug it up in one big chunk and then watered my parched soul. We will keep choosing life. He will sustain us.
Your outpouring of love is part of His plan and purpose in our lives. Thank you. Your cards and gifts and continued donations to our family are sometimes the way He reminds us, especially on really bad days, He has not turned away. Your faithfulness mirrors His faithfulness.
We are humbly asking you to be prayer warriors for us. Please pray for travel mercies tomorrow as Dan and Laney drive the turnpike to DC. Danica and I will fly direct from Akron-Canton to Reagan. Our hope is the easy security, no luggage, close gate and one hour flight will save spoons and cause much less pain for Danica and I’s necks. Please pray for our last night together as a family for quite some time in the hotel in Baltimore. Please pray for Dan and I to grow closer not apart. We both have a hard edge about us today. It’s difficult to be so wounded and know we are heading to allow wounding to our daughter and not lash out or pull back. Please pray for Delaney as she visits family, comes to see Danica post-op and returns here while we stay on. She has such a brave face, but we’ve been leaving her and sending her away since she was four years old while I was fighting to give life to Danica. It’s a painful reality, and she’s conditioned her heart to protect it.
I checked my email tonight. I found the promotions tab which was emptied yesterday full of 405 Black Friday sales sent today. What if there is nothing in this whole wide world that matters except your little girl making it to one of the best hospitals and two of the best neurosurgeons in the world and surviving a rare and difficult brain and spinal surgery? What if all you want is to see her through this…out of danger and out of pain…back in her bubblegum pink room with “Sleep Sound in Jesus” playing her to a peaceful and comfortable sleep? This is when ALL ELSE FALLS AWAY.
I’m going to crawl into my bed now. I’ll play my hope playlist and try to sleep a little. I’ll try to pray a little too.
“Father God, Love us as a mother loves her children. Pull us to your breast and give us comfort and rest. Hold our hands and our hearts in this hard and bring us through the gauntlet to give you praise and glory. By Him. For Him. Through Him. Amen.”
“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 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.”
Chiari Decompression and Cervical Fusion, October, 2010
Twenty one days.
Five hundred and four hours.
Thirty thousand, two hundred and forty minutes.
This is how long it’s been since my total cervical spinal surgery in Lanham, Maryland.
Twenty one days.
Five hundred and four hours.
Thirty thousand, two hundred and forty minutes.
This is how long until my baby girl’s brain and spinal surgery in Baltimore, Maryland.
I’m in bed today. I woke to a cold November rain. (Cue Guns N’ Roses.) I got my hubs and girls off to work and school. I did my ridiculous “fly lady” stuff just in case Southern Living stops by for a photo shoot. I put a roast and potatoes and carrots in the crock pot. I washed my face, brushed my teeth, freshened my deodorant and changed my underwear before putting my pajamas back on. I switched out the dressing on my neck wound, changed the gross pads on my neck brace and adjusted the velcro for a sturdy fit. I swallowed two muscle relaxers and a pain pill and crawled back into my made bed with a heating pad on my still very aching hip where they aspirated bone fusion material. Then I cried.
I don’t do this.
I don’t crawl back in bed.
I haven’t been treating my pain since last Wednesday.
Two weeks is my personal limit for narcotics following surgery.
The next stage is what I call “big girl pants.”
I still think my life is worth a little bit more sitting up in a chair instead of lying down. I’ve been PUSHING…working for hours each day on the details of planning a big surgery at a huge hospital far away. The paperwork is overwhelming. Danica is a new patient. Every single detail of her medical history has to be documented. I need to have specific conversations with the dozen people who will have direct contact with us during her care. I have to manage FMLA paperwork for Dan’s work. He will have to take unpaid time off for this trip and most likely to help care for Danica after and drive us to post op visits. I have to make hotel reservations and figure out navigating the city and parking. I have to talk to insurance and the hospital and understand the cost of this out of network care at one of the best hospitals in the world. What do we pay up front? What needs pre-authorized? What is our responsibility after the large deductible is met? How does Danica’s individual out of network and my individual out of network combine to form the family out of network. What is and isn’t included in patient maximum out of pocket. Is that even a real thing in our situation? This is mind numbing and soul sapping work. After all our hard and all God’s faithfulness I still ask, “How in the world will we do this?” I repeat my mantra over and over. “Thank you God for access to care. Thank you God for access to care. Thank you God for access to care.”
Lists. What needs bought. What needs packed. What meds do I need? What does Delaney need? What school work needs done? Who needs informed at school for Danica and Delaney? There’s a form for that. Don’t forget to stop the mail. There’s a form for that. Should we put up our Christmas tree since it could be mid December when we get home? Should we skip it all together? Danica needs her cast off. I can’t drive. Find a ride. Danica needs her pre-op history and physical and labs. There’s a form for that. Find a ride. I need my stitches removed and post-op wound check. Find a ride. Danica needs her hair cut and the back of her head shaved. Find a ride. I have chemotherapy all day next Tuesday. Yes. Chemo. Find a ride.
I haven’t written any thank you notes for the love surrounding my surgery. Okay, maybe one or two, but the rest sit here beside me today. They are addressed and stamped. I feel shame. Gratitude is my life blood. Without thanks how will you know how your kindness changed everything? I won’t go to bed tonight until I write just a few.
Twenty one days.
Five hundred and four hours.
Thirty thousand, two hundred and forty minutes.
I will STOP.
Time will stand still.
I will send my heart…my Danica Jean…my heart…the little piece of me carved off into her…my heart…into a cold operating room with the best hands I could find and let them open her skull and her brain and her back and try to work another miracle.
Time will stand still.
I’ve been thinking of a conversation between beloved Tolkien characters.
“Frodo: I can’t do this, Sam.
Sam: I know. It’s all wrong. By rights we shouldn’t even be here. But we are. It’s like in the great stories, Mr. Frodo. The ones that really mattered. Full of darkness and danger, they were. And sometimes you didn’t want to know the end. Because how could the end be happy? How could the world go back to the way it was when so much bad had happened? But in the end, it’s only a passing thing, this shadow. Even darkness must pass. A new day will come. And when the sun shines it will shine out the clearer. Those were the stories that stayed with you. That meant something, even if you were too small to understand why. But I think, Mr. Frodo, I do understand. I know now. Folk in those stories had lots of chances of turning back, only they didn’t. They kept going. Because they were holding on to something.
Frodo: What are we holding onto, Sam?
Sam: That there’s some good in this world, Mr. Frodo.”
I can’t turn back.
I must PUSH.
I must keep going.
I must hold on.
Friends, please pray us through this.
Keep loving us through this.
There is good now.
I have to believe there is good in the end.
I know for sure there is His glory.
I have a friend who will be taking over as a kind of “care coordinator” for us when we are gone and when we return. We are working on some practical ways for you to help like Amazon wish lists so we don’t get duplicates of the few things the girls are wishing for Christmas (thank you to everyone already thinking of them in this regard) and more importantly an over abundance of beautiful gifts that become meaningless when what we really need is help paying our basic bills or traveling back to Baltimore for more care. She will be a single resource for you to help get meals to us and have you pick up paper towels and toilet paper while you’re at Target when we are out. I do not know if and when I can drive again so all this stuff that needs done is compounded by my inability to run even a single errand on my own. The biggest need and continued way to help is to donate financially. I’m learning how to use Prime Pantry and even Giant Eagle’s service of grocery shopping and having it ready for Dan to pick up. I find some comfort and control in being able to do these things. I promise I will dedicate a post to specifics including her contact information in the next week. Most of all please continue to pray. Please share and ask others to pray. I know the covering of intercession was the single most encouraging part of Danica’s last huge surgery and recovery. Ask God for us. He knows our needs and oh how He loves us. Our Hope remains. It does. It has to.
This Need To Breathe song is a favorite on our family play list.
“Then you’ll take delight in the Almighty; and will turn your face toward God. You’ll entreat Him and He’ll listen to you as you fulfill your vows. When you make a decision on something, it will be established for you, and light will brighten your way.”–Job 22:26-28
How many times have we fallen into a hotel bed in Cincinnati, Ohio? I should have been keeping a tally along the way. Our first trip was April, 2010. Danica was two and a half years old. We saw the crazy 3DCT confirming her atlas assimilation and how badly her first Chiari decompression failed her. The five months between the tragic news and her second decompression and difficult fusion were filled with second, third and fourth opinions. The surgeons threw their hat in the ring only to second guess themselves and the risk vs. benefit for our little girl and their own surgical careers. There was so little information about a case like hers. We were praying like crazy but moving forward in fits and starts. Many of you read our story as I pecked it out on our little Team Danica blogger site. You were witness to the wrestling of faith and fear. You saw the strain in our marriage and family. You saw me breaking physically and mentally as I fought for the best chance at the best life for my girl.
I’ve been reading for an online Bible study I’m doing from Suzanne Eller’s book Come With Me: Discovering the Beauty of Where He Leads. I’m seeing myself in the humanity of the disciples as we dig deeper. These men saw crazy impossible miracles and days later questioned the economics of a few loaves and fishes and thousands of people. God gave us a miracle. As time passed I thought God was punctuating Danica’s suffering so we could move on to my own bitter fight. The disciples were always forgetting, weren’t they? I don’t want to forget our first miracle. Suzie writes about her husband’s cancer diagnosis years after her own fight with breast cancer. “We beat the odds, and that was a gift. For a long time I thought that was the big miracle, but later I realized the true miracles came as we dug deep into our faith and came up with enough to make it through the day–or the hour if that was what was required.” Whether it’s been six days or six years you’d think I would forever remember the kind of healing and scandalous provision God made for us, but sometimes I don’t. There were moments leading up to our Cincinnati trip I was too blinded by what was unfolding again to turn back and SEE. My heart is fused forward, like my literal neck. Forward. Do the next thing. Do the next thing you think you cannot do. In the past few weeks I’ve been reaching through our story to remember. It aches in the deepest place. You’ve been asking. You’ve been praying. If I write it. If I say it. It’s more true. So I haven’t.
“God, I don’t think we can do this.”
Danica needs another complicated surgery. Her beautiful hardware is broken along with at least one level of fusion. She also has a piece of shunt tubing left near her brain stem. It’s dangerous and needs removed. I could write a neurosurgical and cervical spine treatise here, but it would confuse most of you. We went to Cincinnati with trepidation. After our scans and appointments in late July her case was escalated to new surgeons. We had no idea what our meeting there would look like. I approached it as an information gathering session. The surgeons were humble and kind. They patiently let me ask every detailed question. Dan and Danica mostly listened but felt comfortable in raising their own less clinical concerns. We walked away with an ambiguous scope of surgery and some warning flags. We returned home dealing with Danica’s escalating anxiety about the hows and whens of surgery. “Mom, I just want to know what’s going to happen and MOVE ON.”
While waiting for an important opinion from a surgeon at Johns Hopkins we prayed for guidance. I begged God to make the crooked path straight and help us know for sure where we needed to be. He answered. Last week I got the second call from the Johns Hopkins surgeon after he reviewed every single bit of Danica’s history, prior op notes and her imaging. All the concerns were addressed before I could even raise them. A light shone bright. There are still many details to work out, but her tentative surgery date is Wednesday, October 12th, in Baltimore. She needs an invasive myelogram to see exactly how to approach the drain tubing in such a precarious place. We will have several days of pre-op there before surgery. She will be hospitalized a week or so after surgery. Depending on how she is healing we may need to stay in the area for awhile after discharge. And she will have to wear a brace. There’s no posturing. This is a hard surgery. The brain part. The hardware removal. The new fusion including taking some of Danica’s own rib to make fusion slurry for her neck. This is harder than the prior one, but it must be done and soon and in a new city and at a new hospital.
I’ve been pushing myself to get the girls settled into their new school year. I’ve been trying to spend heart to heart time with my Laney. I finished my last big round of chemo last Tuesday. I will have a Rituxin treatment every six weeks moving forward. My C4-5 is cachunking every time I move my neck. My appointments planned with Dr. Liu at UVA for shunt post op and my scans and appointment in Chevy Chase with Dr. Henderson are the Friday and Monday before Danica’s planned surgery. I know in my heart I won’t be able to make them, but I refuse to cancel them. I need them. I can’t figure out the logistics, but I hate to be so close and not follow through. I’ve been on the phone for hours every day with hospitals, billing departments and our insurance company. It’s soul sapping work. The Virginia hospital where I had my VP shunt placed in April sent my account to judicial affairs. They are suing us. In all our crushing medical debt this is only the second time a hospital has gone to this measure to get a judgment to pursue a levy of Dan’s wages. I’m trying to understand the amount. My insurance company is helping. If I agree to make any payments then I’m accepting the amount which we think is wrong. I’ve focused on paying Danica’s bills this year to prepare for possible surgery at the hospital in Cincinnati. (The money you’ve donated has made the way for us to take those trips and pay most of those bills. Thank you. Thank you. Can you feel our hearts? Thank you.) I try to keep the stress from Dan while quietly informing him. He is working so hard. We can only do what we can do. He can’t become paralyzed by the weight. I try to carry it. I’ve hit a wall. My left eye is twitching. My jaw hurts from clenching and grinding. I ache all over. I’m out of cortisol. The adrenaline is spent.
“God, I don’t think I can do this.”
I’ve felt the needle in my spinal cord. The cut in my back to take a rib. The slicing of the back of my head and neck for a third time. The spasms from damaged nerves and cut muscles. It hurts like hell. To look in my Danica’s eyes knowing that agony is suffering multiplied.
A week ago Danica and I were driving to Paper Allure, a sweet #pentopaper shop I love, to pick up a birthday gift for a friend when the call from the Hopkin’s surgeon came. I pulled over in a parking lot, put him on speaker and jotted notes. Danica heard the entire thing including new, more scary parts of her surgery. She was quiet the few blocks from where we stopped to our destination. At the store she saw a display of bracelets hung by clothespins with one word on them. They are made of swarovski crystals and were a little pricey. She asked if she could have one. I reminded her that she had a birthday soon and maybe it would be special to get one to wear for her surgery. The young lady helping me overheard us. She went in the back room to wrap my gift, and the owner of the shop told her she could let Danica pick one. Kindness changes everything. Danica’s eyes lit up and out of all the possible words like hope and courage and believe she picked trust. The bracelet is from a beautiful project called Little Words. It has a little gold tag with a number you register online with your own story. You wear the bracelet as long as you need the word. When you meet someone who needs the word more than you it’s time to pass it on. They log on and continue the narrative of the life of the bracelet and the one word. In the car on the way home I asked her why she picked the word she did. With the simple faith of a child she said, “Because I TRUST God.” She’s asked for me to read her old entries on Team Danica. She wants me to tell her about the Gauntlet. She still believes in the gift. Oh, God, I can’t see it, but she can. As I tucked her in bed that night she asked to see ALL my scars. She said “If you can go through that many surgeries and be okay, I’ll be okay.” This weekend we worked on making a folder of photos and short video clips from her journey. I’m wanting to make a multimedia slideshow with a new fight song. I played a few I was considering on YouTube for her. She ran to her room and grabbed the first edition ipad with the shattered screen, the one someone bought her six years ago while she was in her wheelchair, and said, “This is the song we should use.” It was Kari Jobe’s “Steady My Heart.” It’s a song on her own playlist she listens to over and over again. I cried as we listened to the meaningful lyrics.
We can trust Him.
Even when it hurts. Even when it’s hard. Even when it all just falls apart.
We can run to Him.
He is lover of our hearts.
He is healer of our scars.
We find refuge in His arms.
My Danica Jean is taking the lead. She’s grabbed my hand. She’s reminding me to lean hard. She’s showing me how to trust again.
“God, we can do this.
Through Your strength.
By Your Grace.
We can do this.
Please, steady our hearts.”
My Danica girl woke this morning and shuffled her way to my lap. She knows she will always find me sitting in my corner chair wrapped in a cozy throw with a cup of coffee in my hands. I put my steaming comfort aside, and make room for her. Her lanky legs stretch almost as long as mine now. She’s so tall it’s hard to kiss her head, especially with my fused neck, but I always try. Our fingers entwine, and I squeeze her hand as if to say, “Good morning, my dear. No matter what today brings I am here for you. I love you. Jesus loves you more.” Some of my favorite talks happen as she shakes off her sleep and begins to think out loud. Today her words took me off guard, “Mom, If God is in control of everything why did He even let sin and sickness happen?” I stumbled as I backtracked to Eden. Things were perfect, but there was this one tree. All God asked was for them to remember He was God and they were not. I see her reaching to make it more personal. Life is pushing her outside her mother’s faith and asking her to claim her own. Her next question knocked the breath from my lungs. “Mom, why did He take my miracle away?”
“It feels like an ocean of sorrow is under my skin…”
I haven’t been able to find words to tell about our trip to Cincinnati on July 26th. We left with incomplete information that has been filtering in since. Today we have more questions than answers. Danica’s rare and messy case has been escalated to new surgeons. We have been asked to return to Cincinnati quickly, on Thursday, August 18th, to discuss a joint effort with neurosurgery and orthopedic surgery.
“Even the ocean eventually meets with the sand…”
Since our March trip, when the scans showed the shocking views of broken hardware and broken fusion from Danica’s skull base to C1, we knew this was coming, but we thought we had months to watch.
“Sorrow on sorrow I’m waiting. Heavy I’m anticipating…”
My mama gut, made much more wise from years of reading X-Rays, CTs, MRIs and radiology reports in addition to dozens of neurosurgical and fusion surgeries of my own, told me the hardware was not the most concerning problem. Yes, it’s broken. It’s broken unevenly and moving on flexion and extension, but Danica’s own words told me instability was the greater issue. “Sometimes when I wake up my neck is stuck, and I have to reach up my hands and put in back in place. I hear a click.”
“Trusting the current will carry me.”
I finished my plasmapheresis before our trip and began my first of four chemo treatments on Tuesday. I’m worn so thin I’d swear you could see right through me. My dear friend came to sit with me at the cancer center. I told her how I was feeling. I cried. It’s as if those closest to me…closest to Dan, Delaney and Danica, don’t seem to understand this could be the thing that breaks us. It’s been almost a full decade of hard that can never be quantified. Dan is numb. Delaney is sad. Danica is scared. I’m completely and utterly broken. She told me I don’t wear it that way. I put on a clean shirt and some makeup. I smile and deflect the conversation to you. I say words about God as if the speaking makes them true.
“You are my strength. You are my song. You are my salvation. You hold it all together. You hold it all together.”
He is God. We are not.
“We come with great expectations and fears in our hearts.”
I didn’t know how to answer Danica this morning, so I reached for my Bible and turned to her life passage. My life passage. I read Psalm 139 aloud.
You have searched me, Lord,
and you know me.
You know when I sit and when I rise;
you perceive my thoughts from afar.
You discern my going out and my lying down;
you are familiar with all my ways.
Before a word is on my tongue
you, Lord, know it completely.
You hem me in behind and before,
and you lay your hand upon me.
Such knowledge is too wonderful for me,
too lofty for me to attain.
Where can I go from your Spirit?
Where can I flee from your presence?
If I go up to the heavens, you are there;
if I make my bed in the depths, you are there.
If I rise on the wings of the dawn,
if I settle on the far side of the sea,
even there your hand will guide me,
your right hand will hold me fast.
If I say, “Surely the darkness will hide me
and the light become night around me,”
even the darkness will not be dark to you;
the night will shine like the day,
for darkness is as light to you.
“Send us Your light as we’re making our way through the dark.”
For you created my inmost being;
you knit me together in my mother’s womb.
I praise you because I am fearfully and wonderfully made;
your works are wonderful,
I know that full well.
My frame was not hidden from you
when I was made in the secret place,
when I was woven together in the depths of the earth.
Your eyes saw my unformed body;
all the days ordained for me were written in your book
before one of them came to be.
How precious to me are your thoughts, God!
How vast is the sum of them!
Were I to count them,
they would outnumber the grains of sand—
when I awake, I am still with you.
“All of the earlier troubles, chaos and pain they unravel”
He is God. We are not.
This afternoon we snuggled in the big bed and watched the movie Miracles From Heaven. There were so many similarities to our story. The mama bear fighting. The faithful daddy staying behind doing what needs to be done. The older sister who gets a little lost in the shuffle and sacrifices more than most know. The crushing cost of travel for care and out of network doctors. The lonely divide the physical distance creates between a community of support and hospital halls walked alone. The hurtful words from well meaning people about why this is happening or how just a little more faith might change the outcome. Once again my girl’s little hand found mine. She squeezed it at certain parts. Parts I knew she understood fully because she’s been there. She jerked it away to wipe the tears running down her cheeks. I asked her several times, “Is this too hard for you? Do you want me to turn it off?” She wanted to see it through. We hugged as the credits rolled. I didn’t need to tell her I was skeptical about visiting heaven and living to tell about it. I didn’t need to explain to her how against all odds God can decide to heal someone completely. She felt the power of the narrative, because she knows it to be true.
He is God. We are not.
Danica is sleeping next to me now as I peck away in the dark. She asked for the heating pad for her legs and the cold pack for her neck. Dan is gone working overtime all day and night. Delaney is at a bonfire with her girlfriends. I wandered back to the old Team Danica blog and read the posts from August, 2010. It’s unsettling how easily they could have been written this month, six years later. There is one glaring difference. We know for sure…
He is God. We are not.
We’ve seen His faithfulness in the land of the living. We’ve seen Him provide. We’ve seen Him make a way when there was no way. We’ve seen Him bind up our wounds and heal our broken hearts. We’ve seen Him preserve our marriage and our family. We’ve seen Him rescue us from the root of bitterness. We’ve seen Him shine through the darkest night. We’ve seen Him perform a real in the flesh miracle.
“Looking ahead we rejoice in You.”
He gives and He takes away. Blessed be the name of the Lord.
Danica, I believe this, my brave girl. I do. I want to mirror this to you. A thousand things are happening in this one thing.
He is God. We are not.
September 20th, 2009 we found out Danica had a Chiari malformation. Not knowing all that would mean, I wrote this:
Do I believe God makes no mistakes? Do I believe He lovingly formed this child’s skull and brain how we find it today to fulfill His purpose in her life and in ours? Do I believe we lack nothing God’s grace can’t give us including strength for today and the days ahead? My verse for this week has been Mark 9:24 “I do believe; help me overcome my unbelief.”
I’m afraid. I’m so very tired. I know that trusting God with my child is perhaps the hardest thing He will ask me to do. As He grows my faith and asks me to rest in His promises. I will fall. I will have moments of anger and confusion. I will want to quit and walk away.
Oswald Chambers wrote, “Living a life of faith means never knowing where you are being led. But it does mean loving and knowing the One who is leading. It is literally a life of faith, not of understanding and reason — a life of knowing him who calls us to go.” Knowing a God who is unchanging and will do everything He says He will do is the only way I will navigate through the next weeks and months. I believe.
“You are my strength. You are my song. You are my salvation. You hold it all together. You hold it all together.”
Tonight. This song from All Sons and Daughters upcoming album Poets and Saints is on repeat. My heart melody. Part lament. Part praise. Yes.
“If I did not like the way the light looked at a given moment, I knew it would change. If I loved the way the light looked at a given moment, I knew it would change. I could not speed it up, and I could not slow it down…the light was my life…Paying attention to it, I lost my will to control it. Watching it, I became patient. Letting it be, I became well.”–Barbara Taylor Brown, An Altar In The World
I’m sitting at the Raleigh-Durham airport. Our flight should have been in the sky in time to see the sun setting from the windows. Instead we are on a several hour delay. I have traveled alone the majority of my life. I’ve flown many times for work, pleasure and health appointments. I have rarely minded settling in to people watch, read and write and listen to a favorite playlist. When I don’t have to manage other people’s emotions I can handle most anything and even find some kind of enjoyment in it. With Dan and the girls along I become acutely aware of their fatigue, their frustrations associated with boredom and waiting and their hunger and thirst. Tonight I sit with a bottle of Purell and a package of wipes. I’m anxious for them and with them. I take a Valium for my neck in spasm from carrying my bag and sitting so long in a strained position, and I pray. “God, don’t let this long day and night become an ugly ending punctuation on such a beautiful trip. Help us be kind. Help us be patient. Take us home safely. Amen.”
We’ve been in North Carolina on the shores of the Atlantic for a week now. It wasn’t a secret. It was a last minute, quiet gift from dear friends who know more than most what we’ve been through and what we are facing. It was perfect timing. The Tuesday to Tuesday slid between two tropical storm systems. We had beautiful sunny days. Every moment was Grace. Grace by definition is “undeserved merit.” People look at our hard and often say when we get a small break, “No one deserves it more than you guys do.” We don’t operate from this place.
This trip still pinches. The “cheap” flights come with baggage fees. The kennel for Twixie, the airport parking and inevitable eating out despite our many peanut butter and jelly sandwiches strain our “impossible” budget. I tried not to speak in terms of “not enough” to Dan and the girls. I live in the truth of DAYENU. Enough. This entire trip is MORE THAN ENOUGH. This is reality for me. I literally don’t take a single breath for granted. I want my family to understand this as fully as I feel it, but I’m not sure anyone can unless they’ve sat in the painful void as long as I have.
A little gnawing voice has whispered we shouldn’t be here at all. People donated so much money so I could go to UVA and have my latest surgery. I constantly run my fingers over the map of the winding skull incision where prickly new hair tries to grow. I feel the raised bump of my shunt and follow the tubing down the side of my head and behind my ear. I remember. This is why you’ve loved us over and over. This is what you prayed for. You’ve wanted a pain free day in the light for my family and I. God answered with a week of them.
There’s an email in my inbox from Danica’s retired orthopedic surgeon’s assistant. We are trying to schedule Danica’s new appointment in Cincinnati so we are able to see him after her scans and consult with the current head of orthopedic’s at Children’s. It’s never easy coordinating. Dan and I cannot wrap our heads around another trip with long drives on roads that hold so much dread. We can’t think about hotels, bad food, waiting and more waiting and most of all our Danica Jean’s eyes trying to be brave but spilling tears of fear about the unknown. I tried to stay in the HERE and NOW all week but sitting here tonight watching Danica hold her little neck in her hands with the pained look I know all too well I am scared of what comes next.
The light is ever changing. I’m always chasing it. I’ve come to know treasures in darkness. I thought I could write and publish a book about the gifts found in ugly packages. The more I read over my own words the more hollow they seemed. I didn’t delete them, but I hid them away. The same friend who gave us this trip asked me to pull “Gauntlet” back out and read it again. She challenged me to reconsider what I poured from my heart there…maybe not as it is written but at the very core. My vision has matured. What was myopic about Danica’s miracle and my own journey has new layers now. I was trying to write an ending that hasn’t happened yet. I was trying to speed up what could only be seen by slowing down.
I am watching.
I am paying attention.
I’m letting things be.
I’m becoming well.
“And I will give you treasures hidden in the darkness–secret riches. I will do this so you may know that I am the LORD, the God of Israel, the one who calls you by name.”–Isaiah 45:3
“If you live in the dark a long time and the sun comes out, you do not cross into it whistling. There’s an initial uprush of relief at first, then-for me, anyway- a profound dislocation. My old assumptions about how the world works are buried, yet my new ones aren’t yet operational. There’s been a death of sorts, but without a few days in hell, no resurrection is possible.” ― Mary Karr, Lit
The last time I wrote here I felt like I was dying. I wanted to die. My intracranial pressure ushered me into one of the darkest times of my entire life. The unrelenting pain felt as close to hell as possible without total separation from God. Without the “inch of daylight underneath my door” I might not be here.
I knew my third lumbar shunt had failed. In addition to the mind blowing headache I had a knife like pain where the shunt was placed under my ribs on the right side. My face carried the expression of someone being stabbed over and over again. I don’t remember smiling for months. I don’t remember laughing. When I passed by a mirror I gasped at my reflection. It’s easy to forget who you are or why you are here when it feels like the demons of pain are inhabiting every part of your mind, body and spirit. You just want release.
Our March trip to Cincinnati for critical and overdue scans and appointments for Danica showed shocking images of her broken cervical fusion and hardware. They jolted me into an even more heartbreaking reality. A close friend visited me the week we returned. She knows in an intimate way how I suffer. I texted and asked her to wait a few hours later than planned before arriving. She told me she was prepared to perhaps find me dead when she arrived. She would be the one I wanted to find me. She wouldn’t blame me. My girls would just know their mommy was very sick, and my body couldn’t survive any more. She found me crumpled in my corner chair but very much alive. Couched in her compassion she reminded me I was the only one who could advocate for my sweet girl. I needed to live, and I needed to do whatever I could to be more well for the fight.
Deciding to live meant humbling myself AGAIN and asking for your help. You can’t know how gut wrenching begging is unless you’ve had to do it. I prayed for two things at the beginning of 2016. I wanted no new surgery, and I pleaded with God I wouldn’t need resources from you. He said “No” to both. He orchestrated the details for me to get an appointment with a very skilled vascular neurosurgeon at the University of Virginia right away. YOU gave us the money I needed to travel, pay for upfront medical costs and for the long hotel stay needed for diagnostic procedures and post op. I left my family and headed to the Blue Ridge. It was fitting I would find real help with dogwoods blooming all around. In a surgery not without complications my lumbar shunt and tubing was removed. I have two large incisions on my back and my upper abdomen from the tricky extraction. The surgeon then cut a flap on the top of the right side of my skull and implanted a VP shunt. The tubing begins in a hole drilled in my skull and snakes through smaller cuts behind my ear and down through my chest all the way into my abdomen where it empties excess cerebral spinal fluid that collects around my brain and causes the pressure. This shunt is different in many ways. Most notably it is adjustable. This means as pressure situations or my body’s reaction to them change we can re-calibrate without a new surgery.
I don’t have a headache. I haven’t had a headache since my surgery a month ago.
My pain was an incarceration. Most days I felt like I’d been thrown in the dark and bitter hole of solitary confinement. I’ve been adjusting to the sudden light and the sights, sounds, tastes and even smells of good. I didn’t know if it would happen. My husband and children didn’t know if it would happen. Every surgery and treatment has been like a parole hearing. The results of this VP shunt placement are a “YOU ARE FREE.” I know I’m out “on bond.” My body will fail in new ways and commit old crimes, but today, in the light, staring at the sun, I know for sure God heals. It is a mending that will come in fits and starts until heaven. I surrender to this, but I also believe He wants my resurrection to start HERE and NOW. He’s working out His kingdom come on earth in my heart and life. This is GRACE. Dear departed Kara Tippetts wrote these words in her book The Hardest Peace: Expecting Grace in the Midst of Life’s Hard as she slowly died from cancer.
“Jesus didn’t have to extend His love. He didn’t have to think of me when He went up on that cross. He didn’t have to rewrite my story from one of beauty to one of brokenness and create a whole new brand of beauty. He simply didn’t have to do it, but He did. He bought me. He bought me that day He died, and He showed His power when He overcame death and rose from the grave. He overcame my death in that moment. He overcame my fear of death in that unbelievable, beautiful moment, and the fruit of that death, that resurrection, and that stunning grace is peace. It is the hardest peace, because it is brutal. Horribly brutal and ugly, and we want to look away, but it is the greatest, greatest story that ever was. And it was, and it is.”
I’m remembering He loves me. He’s always loved me. In the hellish confusion I’d lost sight, but He was there. He’s always been there.
It’s been more than eight years since God asked me to give up a life I thought was “significant” and become a vessel of brokenness and suffering. Three years into the journey He told me to take my Isaac, our little Danica, and surrender her completely to Him as well. October, the month of Danica’s birth, and three years later, the month of her big brain decompression and fusion, is and will always be full of gratitude and celebration of miracles and provision tempered with remembered grief and pain. My heart breaks and is healed over and over again on these and other personal anniversaries tattooed forever in my calendar brain. After twenty-one surgeries of my own there is not a safe month or even a week anymore.
I’ve seen the ram in the thicket. In every possible and literal way God has been our “Jehovah-Jireh.” He gave us the miracle healing of Danica. He showed up financially at every turn to give access to the specialized care Danica and I both needed. He gave me a clear diagnosis after years of mental and physical anguish. He moved mountains to get doctors near and far to be willing to take the risk to treat me. He’s surrounded us with the kind of love and support I never believed possible, and it hasn’t stopped.
I’ve been told by beautiful, nose wiping, carpooling, snack bringing, essential oil using moms they are in awe of our “story.” They say God has used it in their own hearts and homes to garner more gratitude for their everyday. I’ve mostly prayed God would use this hard He’s written for me however He deems to bring Himself glory, but on the worst days I feel sad and even a little mad when my nothing like I dreamed of life is a springboard for someone else’s comparative thankfulness. I want goldfish in my car seats and play dates and sleepovers at my house. I want to be cheering my daughter on at her volleyball games and to sit in the front row at her orchestra concert. I want to volunteer as a classroom helper and listen to second graders recite their Scripture verses. I want to go on even one field trip with my girl. I want a drop of frankincense diffused to somehow make me more well. I want to be tired from something other than trying to survive. I want to be tired from living. It’s not because I don’t think this struggle could matter. It’s because this isn’t what I wanted at all. None of it. I squirm at any romanticized version of the pain going on over here. It is brutal. It is one crisis to the next, and I know in my heart the supernatural healing God gave my girl is not what He has written for me at all. Until heaven I will be some measure of broken. Every day I wake up wanting something different and “better” for myself and my family. Every day I find my way back to the foot of the cross and remember even this is Grace. Every day I am called to surrender.
“Surrender to the work of the Holy Spirit and you will come alive. Exhale, and you will live. When you have spent it all and left it on the track, when you are left in silence and someone else runs all the red lights on your behalf, when you are at the end of yourself and you can barely remember the difference between up and down, choose to breathe. It is our direct reminder of the Holy Spirit at work in this world and on our behalf. It is our immediate reminder that God is always reaching toward us and lifting us to himself to breathe life into our long reach for a life that matters for something.
God will meet you there and receive your one, beautiful, miraculous breath as an act of worship and as a surrender of yourself into his purpose for your life.”
Much of my life is now lived in this Jacobean tapestry chair I like to call my “nest.” I am here in the early morning with numb feet, aching head and joints and too tight heart to sip the coffee my husband brings me, shake off my night time meds and snuggle my littlest. I find a Psalm here. I study here. I pray here. I write pen to paper to my family, my friends and even strangers here. I write for you to read and mostly for no one to read in this place. I am here on the computer and phone tending to a territory of people needing encouragement and prayer and light on their own difficult walks. I am sitting here when people come to visit and sink into the comfort and peace of my yellow sofa with a throw. I listen here. I am here juggling a calendar of appointments and treatment and surgeries. I am here when the bill collectors call and call and call again. I am here when I balance our checkbook and always find there is Dayenu, enough. More than enough. I am here when my girls are dropped off from school on days I cannot drive. My legs always wrapped in a blanket and dozens of books and journals and paper and pens stacked around me like a fortress. Beside me is my little dog, Twixie. She is faithfully here. I cry here. I cry a lot. I find myself back here in the dead of night when everyone else is sleeping soundly. My pain brings me to this place I’ve chosen over bed, as if being upright even on the worst days and nights will make me feel less worthless and more productive. I refuse to waste this. I plead with God to not let me waste this. Make this count. Please God. For You. I struggle here. I resist. I think there is no way this is where God could use me best, so I beat His chest and beg for something different. Anything different. I hold my breath here like a temper tantrum toddler. When I am almost unconscious from the display of lack of trust He gently helps me see my here and now, this time, this place, this body, this life, this chair is exactly where I will find my significance. He causes me to surrender EVERY LITTLE THING, and I inhale Grace and exhale praise, and I believe.
I turned forty years old last Thursday. An unplanned brain shunt revision in Maryland just a week before left my family and I weary and worn again. Surrender. I had to cancel a week long writing retreat on Lake Michigan I was sure He wanted for me and for Gauntlet. Surrender. I humbled myself to receive help once again from others to make my surgery possible. Surrender. Friday night my dear friend Janet and her husband along with my sister threw me the most fabulous birthday party ever. Janet made a toast and mentioned the illustrious “forty before forty” list I’d made and how many of those things I’d longed to accomplish were left unrealized. She then pointed out the almost forty people gathered together in celebration. They were in fact my true and important life work. I gasped at the beauty of this realization. Most of these relationships have been formed and nurtured and grown from this chair.
I am entering a new year of life and a new decade with a heart humbled. I trust you, God. I do. I know there will be moments and hours and days I will struggle, but I surrender EVERY LITTLE THING to you. I will inhale your Grace and exhale praise. I will believe this life in this chair matters in your kingdom and counts. My Hope remains.
1. Share this post on social media to give your friends a chance to win this amazing book and super sparkly necklace. Maybe they will turn around and gift it to you!
2. Please leave a comment here about a way God has asked you to surrender your ideas of significance and give in to His greater plan for your life and let me know where you shared.
3. Totally optional but highly recommended is to head over to Deidra’s place and subscribe to her blog Jumping Tandem. I had the honor of meeting her at The High calling retreat last November and have been truly blessed by her writing and her life.
A winner will be randomly chosen from all the entries on Sunday night, November 15th, and announced Monday morning!