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.”
“I’d like to say we had to learn the art of receiving, and we did, no doubt. But the longer we’ve walked through this season of suffering, we’ve seen that those two words, giving and receiving, get blurred in Jesus. We have received so much from others, but I believe if you were to ask them, they’d say they’ve been on the receiving end. It’s funny, isn’t it? When weakness and vulnerability are the foundation, It seems like everyone wins…It IS somuch easier to give than receive. It’s just plain hard to receive, and even harder to ask.”–Kara Tippetts
I’ve slowly learned that vague requests for help and well meaning broad offers of help are often lost on one another. “Call me if you need something” becomes a very hard way for a person in need to reach out. What if I ask for something you can’t provide, don’t have time or energy to provide or in the swirling ache of so many needy relationships aren’t compelled to provide because God is calling you to serve someone else in another way?
“Offering specifics not only gives the opportunity to serve in an area we’re gifted in but also allows people to begin to ask for help more easily.”
My dear friend, Janet Morris, has offered to be our care coordinator over the next few months. If at anytime you have questions or personal ways you want to reach out to us she can be reached at MonicaDanicaHelp@gmail.com. I will be using this blog as a place to clearly communicate with you, our tribe, on how you can serve us as we walk through the next few months. This is an overview here, but it may change because so many things are truly unknown. If you are interested in following along please subscribe for updates.
From now until we leave for Baltimore, Saturday, November 26
Our primary need is financial.
Donations can be made at the Team Danica-Monica GoFundMe now and throughout our trip. They can be mailed to 3195 Rockingham St. NW Uniontown, OH 44685. Know if you are mailing a check our mail will be stopped Wednesday, November 23rd, and we will not receive anything until we return several weeks later.
Dan has three paid days left and the rest of his time off will be unpaid FMLA. Insurance premiums will still need to be deducted. He is covered for 12 months and will need to take other unpaid time for post-op trips until his PTO time reloads at the end of March. Danica has out of network deductible and out of pocket costs that must be met prior to surgery. January 1 all our deductibles start again and care is cash pay until they are met. Danica’s first post-op will require expensive scans and be early January. We have a hotel reserved for several weeks but are praying for an opening at the Believe in Tomorrow house across the street from the children’s hospital. Please pray about this! Additional trip costs include gas, tolls, food, parking, post-op meds and wound care supplies and airfare for Danica and I home.
Requests: Beginning this coming Sunday, November 20th, we ask that no one just DROPS BY to visit. We will be having our family Thanksgiving on Sunday since Dan is working Thanksgiving Day and the Friday after. We need the last week to love on one another, pack and prepare. We are also trying to protect from any illness. If you have a gift or something to drop please leave it on the porch and let me know by text if you have my number or email Janet at MonicaDanicaHelp@gmail.com, and she will let us know.
I have a distinct need of having someone help me pack next week. It is a physically hard task with much to consider not knowing how long we will be gone. I cannot be bending or reaching or folding at all. As uncomfortable as I am with just sitting there giving direction I know this is one way I must humble myself.
There are several home items that I have been trying to take care of. We have a broken windowpane in the back of the house where the mower threw a rock. It is double pane so the house is secure, but I’m concerned weather between the panes will ruin the window frame. I have a vague appointment scheduled on Monday for someone to come give me an estimate. They have already not showed once. I’m hoping to schedule a repair and would need someone to meet them here if this happens while we are gone.
I have resisted offers for meals since returning from surgery. My girls eat when they get home from school and Dan much later when he gets home from work. I haven’t been eating much at all. It is also difficult for me to engage at drop off. Corralling our little Twix, opening the door and even chatting for a minute is stressful. My compulsion to have a washed face and clean pajamas on makes it worse. Clearly, my masochistic casserole behavior today is not a great alternative. I don’t want to set up a meal schedule for the remainder of our time, but if you would like to feed us please let me know.
During Surgery and Hospitalization
From Saturday, November 26th-mid December
Our primary need is PRAYER! Please set a reminder to pray and ask others to pray.
Danica has two days of pre-surgical tests and appointments beginning Monday, November 28th. Her surgery is scheduled for Wednesday, November 30th at Johns Hopkins Medical Center in the Bloomberg Children’s Center. It is a long and big surgery that will last 4-6 hours at least. They will be taking part of her rib to use for fusion material. One neurosurgeon will be going into the brain to try to remove a drain that was left there in her last surgery. A spinal neurosurgeon will try to remove the broken hardware he can to make her safe without disturbing the fusion with embedded hardware in her skull base and lower cervical area. Then they will refuse what is needed with the bone slurry made with her rib graft and new hardware. Danica’s head is full of foreign stuff like a cerebellar sling holding her brain stem up, a wire mesh between her brain work and bone work, the drain in her fourth ventricle that poses a danger and the rare broken hardware. After surgery she will spend several days in the PICU and then be moved to a neuro floor for up to a week if all goes well. We will then be discharged to a hotel until she can have an additional post-op appointment and wound check.
Requests: While we are in Baltimore: PLEASE do not send flowers or balloons to the hospital. They are not allowed in the PICU. They make me very ill. Children are often moved to multiple rooms during their hospital stay. Moving all that stuff can be cumbersome. Those of us present will make sure Danica receives cheer. If you would like to give something to Danica you can gift itunes or amazon cards by sending ecards to firstname.lastname@example.org. Danica and I will be listening to audible books and when she is able she has a tablet to watch movies or play games or music on.
I will be updating my personal Facebook, the GoFundMe and blog daily if possible. There is always someone coming in and out of a hospital room day and night. This is grueling especially as the main advocate. I will not be taking personal phone calls or answering text and emails everyday. Please leave your love and prayers, and I will share with Danica and Dan and respond when I can. My silence means I am focused on Danica’s care and support.
Sometime the second week of December or later
I will post our homecoming information when we know.
I am still not able to drive, and Danica will be homebound as well. Dan will return to work immediately. Delaney has rides to and from school scheduled. I have a list of people willing to help if something falls through.
Meals. There will be a “Take Them A Meal” site established and shared once we know our return date. We are eating very simple and healthy. Look for likes/dislikes and special requests on the site when you sign up. We will only need meals a few times a week.
Groceries. I am trying to use the Giant Eagle Market Place service of ordering groceries online and they will be ready for pick up for Dan. If I have a specific need for shopping I will share.
Non grocery items.
This is the single most exhausting part of our shopping. Dan works all week and then cleans the house, does laundry, yard work and shopping on the weekends. We buy all our paper, cleaning and beauty products at Target. I try to go along with Dan on these trips. There will be a “Sign Up Genius” site established and shared once we know our return date. It will list specific needs in this area. This is true gift to Dan especially.
These sites are helpful because you and I can see when a need is met.
I’m sure there will be other things that come up we need help with. I will share here.
We may return just a week or so before Christmas. Many of you have already asked for a list of things the girls might need or want. We are grateful. I will not be able to do much shopping. My one greatest joy and their favorite part of our Christmas tradition is stockings. I will have someone take me out to do these myself or order things online. In the interest of no duplicates for their wishes I have created an account at “Gifster”. It is an open account named “Snyder Christmas.” I will add in the notes who the gift is for, actual web links and any sizes or colors, etc. Amazon cards are always wonderful, because we can buy for the girls there and find almost anything. PLEASE do not have these gifts shipped to our home until we return from Baltimore. If it’s something that has a longer shipping time or you just want to get it done and off your to do list please email Janet, and she can share an address where it can be shipped and later delivered to us.
Closer to Christmas I will need help wrapping gifts. This is very hard on the neck and back.
Requests:Please do not buy a lot of things for us. Our greatest wish this season is to be back together in our home. Advent is a special tradition we celebrate daily as a family. We will miss the first few weeks of this treasured time where we nightly light candles, read and sing together and focus on the real meaning of Christmas. It is wonderful for the girls to have a few gifts to open, but a greater gift is financial assistance to pay bills, continue access to care and the resources to perhaps create special memories once healing has occurred. Delaney has a band trip to Disney in February and a Chicago trip in March for school. She is doing her own fundraisers locally with the other students, but she is asking for money to put towards the trips. This brings lasting joy and something for her to look forward to. She is often the “forgotten one” in all this hard.
Danica and I are looking forward to hearing Christa Wells along with Jess Ray and Taylor Leonhardt sing and play during their “Three Little Birds” concert tomorrow night at a intimate church in Akron. It’s a push for us, but I know it will fill some empty places in our hearts.
For every one of you who have given…are giving, have served…are serving, this Christa Wells song is for you. We need one another. We are sisters and brothers. You make us more than we are alone. Thank you.
“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.
I still walk.
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.
I still walk at home.
Unlock the door,
wheel inside, then
My remembered feet
on the cool slate,
My gaze straight into Gran’s painted eyes.
Someday, I will have to look up
or take her down with me.
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.
I love to slip out of bed when my husband and girls are still sleeping. Tucked under warm covers with their precious heads cradled in soft pillows, I watch their bodies rise and fall with sweet gift of breath. I see their faces relaxed in perfect peace. I quietly sneak out to a mostly dark living room and settle in my nest chair with a steaming cup of coffee. My chunky throw is wrapped around my legs, and my dear Twixie pup is snuggled beside me. I watch the night become day as light slowly rises in the east and in perfect quiet I pray.
I pray for my Dan, lover of my heart, my mind and my broken body. He cherishes me like Christ does the church. He is the man who says, “Whatever is happening to you is happening to me.” When I returned home from my Maryland trip last week we sat on our bed looking at the calendar trying to make sense of the days to come purely from a logistics stand point. At first it seemed it was truly impossible for him to come to Maryland this week with me. He wept. He said, “You know you’ve reached rock bottom and are a failure as a man when you cannot be there when your wife goes into major surgery.” Many times before we’ve made Dan staying here with the girls the priority. He needs to work. The girls need continuity and the comfort of one parent being present with them. Now, more than ever, it is difficult to leave Danica. The situation with her neck is precarious, and she fell and fractured her wrist and elbow last Saturday. There is something about this particular operation, the bigness of it and my own anxiety, that makes Dan want to be there more than usual. We’ve made a plan. Dan will drive me to Maryland Tuesday and be there forty-eight hours to make sure I come out of surgery okay, and then he will rush home to Ohio. Yesterday, I was sitting here in my usual place of morning ritual, and he brought me a #pentopaper card. He knows I’ve been doubting the value of fighting any more. He reminded me of my own vows. “If I do nothing else but love Dan, Delaney and Danica well it will be ENOUGH.” He reminded me of the deepest parts of myself, my love for others and my good God that transcend this brokenness.
Father God, If there was no other evidence of Grace in this life, the abiding love of my husband Dan would have me completely convinced. You see how he is hurting. You know the shame he feels when we once again have to beg others for provision, as if any family, even a wealthy family, could have carried such a heavy financial weight for this long. Encourage his heart by each gift of support. Help him to find joy in the love we continue to receive. Help him to know his wife and children, those who are giving and especially You do not see him as inadequate in this regard. Please give him strength in the days and weeks to come. He is a servant leader in our home. Help him know the groceries and the laundry, the cleaning and the yard work and the care he provides the girls and I are not small things. They are a living sacrifice. Protect his body from illness. Please give him mental and emotional strength to move through the drive to Maryland, the long waiting during my surgery, the seeing me in such a wounded and pain filled state, the hard drive home alone and the many days here working and loving on our girls while I am away. Help him know for sure You love him and have plans for a future and a hope. Amen.
Dave Matthew’s “Steady as We Go” is one of the love songs on our life playlist we slow dance to in hard times. It is exactly the way my Dan loves me.
I’m pushing over the next forty-eight hours to do all the things a momma does before she leaves her family for two weeks compounded by the fact I will be in great pain and recovering when I return. We have exactly six weeks between my Wednesday, October 19th surgery at Doctors Community Hopital in Lanham Maryland and Danica’s Wednesday, November 30th surgery at Johns Hopkins in Baltimore Maryland.
We are grateful for your great love for us. It is God making a way. Many of you have asked how you can specifically help in other ways. There are needs. After my surgery I will form a private facebook page where we can post how and when we need help and you can respond in kind.
YOU keep us waiting.
You, the God of all time,
Want us to wait
For the right time in which to discover
Who we are, where we are to go,
Who will be with us, and what we must do.
So thank you … for the waiting time. –John Bell, quoted in The Westminster Collection of Christian Prayers
Friday marked 37 days since I pulled my car over and talked in detail with the Johns Hopkins neurosurgeon about Danica’s broken hardware and cervical instability. We picked a “tentative” surgery date of October 12th. I broke up with Cincinnati Children’s. And then it was quiet. We know all too well how difficult it is to get the OR for such a long period of time with all the right people scheduled, especially two head neurosurgeons who have different clinic and surgery days. Because the doctor is brand new to Hopkins he had to order special equipment, something in particular for Danica’s difficult operation, as well as the instrumentation for her new fusion. I guess it makes sense you don’t take a position at one of the best hospitals in the world and then waltz in and use whatever stuff they have. I keep saying something breezy like, “God’s got it on His calendar!” But we’ve been getting antsy, and I’m wanting to orchestrate the hundred things that can only be planned after we have a firm date. You can imagine my “beautiful mind” notebook, right?
My dear friend Kris Camealy has written a new Advent devotional titled Come Lord Jesus: The Weight of Waiting. I began reading an advanced copy the same week we made the decision about the surgeon and hospital for Danica’s surgery. Oh how I needed the disciplined walk through holy anticipation of God’s good plan of salvation through the birth of Jesus Christ. Every day of the Advent journey is deeply rooted in Scripture. I’ve gone back to read the passages again and again. I began to realize. God is not asking me to do nothing in the wait. He is asking me to prepare my heart and mind. He is asking me to humble myself and sit in hopeful and trusting expectation. He is asking me to believe He will work His purpose perfectly in the fullness of time…His time and not mine. If a day is like a thousand years and a thousand years is like a day then a month can definitely feel like two thousand years! He is asking me to believe He is there in the silence. (I will be posting about Come Lord Jesus again when it officially releases on October 16th and doing a giveaway!)
During another difficult waiting season in my life my friend Violet send me these words written by Oswald Chambers:
“God’s silences are His answers…Can God trust you…or are you still asking for a visible answer?…His silence is the sign that He is bringing you into a marvelous understanding of Himself…You will find that God has trusted you in the most intimate way possible, with an absolute silence, not of despair, but of pleasure…If God has given you a silence, praise Him, He is bringing you into the great run of His purposes.”
I already see the beautiful things He’s providing in this quiet time of waiting. With no firm surgery date I have been able to just be with Dan and my girls. I was able to celebrate Delaney’s fourteenth birthday doing “normal” mom things like taking her and her friends to try on formal dresses and out to eat. The first month of her freshman year of high school I was not just physically here but fully present. It has made all the difference. Just the simple stability of picking Delaney and Danica up from school every day has created calm in all of us. I was able to schedule new family pictures and actually follow through. I’ve mostly stayed off my computer and phone and snuggled, read books and had long talks with my Dani J. We celebrated Danica’s ninth birthday with her friends this weekend and will have cake and presents as a family tonight. There are barely traces of frantic Monica, because there was nothing I could do but WAIT and live real life in the quiet instead of holding my breath. This is Grace.
I canceled my Friday, October 7th scan and appointment in Charlottesville, Virginia with the vascular neurosurgeon who placed my VP shunt in April. The logistics of flying there are much more expensive and trying to navigate the several hours from there to DC without being able to rent a car and drive myself are just too difficult. My shunt is working beautifully, and I have continued to have complete relief from pressure headaches and symptoms. It rained buckets last week. I’ve been overwhelmed realizing what a true gift my surgery was. I never could have continued to fight for this relief without all of you praying and encouraging and donating. You didn’t give up. Thank you. We suffer gratitude. I will keep on thanking you because there is nothing else I know to do.
I am keeping a long standing appointment in Maryland with my neurosurgeon on Monday, October 10th. I am suffering increasing neck pain and symptoms. There is definitely spinal cord compression. If Danica’s surgery had remained on the 12th I would have needed to cancel my own scan and consult. I’ve wondered if I could even make it through being Danica’s advocate and caregiver during surgery, hospitalization and long recovery in the pain I’m in. Much like my emergency hysterectomy before her last big surgery I see God making a way for me to put on my own oxygen mask first. The plan is for me fly to DC this coming Sunday, the 9th. I will have my upright flexion and extension MRI and see my neurosurgeon on Monday and fly home that evening. I’m secretly praying if I need a one or two level fusion he would keep me and just do it even though I have no idea how my family would function here if that happened or how we would financially do it. I would be a much better mom to Danica in post op mode with more stability and less pain. Will you please pray specifically for this trip? I also have all day chemotherapy tomorrow. The new treatment plan is for me to have a full bag of Rituxin every six weeks indefinitely. Over the past week or so I have begun getting the blisters back on my hands and feet and my eye and legs have been twitching. These are always the first signs infection is ramping back up. Will you please pray this chemo will suppress the fires and be a long term answer, so I can completely avoid plasmapheresis? It is always healing, never being healed.
Before Danica’s big surgery six years ago Dan and I both read Tony Woodlief’s book Somewhere More Holy. (I can’t recommend this book enough.) I pulled it off the shelf to read again, and these words settled in my aching places:
“We have forgotten the God of small things, which is mostly what He has been with us because we ourselves are small, fragile things. We wait impatiently, sometimes hopelessly, for the burning-bush God, or the booming thunderclap God, forgetting that even a righteous man like Job covered before the whirlwind of God’s voice, that holy Moses could bear only a glimpse of God’s backside. We assume that we would hold up well against a visitation by the whirlwind God, and in our narcissistic longing we forget the God of the still, small voice, the suffering-servant God, the God who said of children that His kingdom consists of such as these. ‘Part of the inner world of everyone,’ writes Frederick Buechner, ‘is this sense of emptiness, unease, incompleteness, and I believe that this in itself is a word from God, that this is the sound that God’s voice makes in a world that has explained Him away. In such a world, I suspect that God maybe speaks to us most clearly through His silence, His absence, so that we know Him best through our missing Him.’”
I did finally get THE call from the Hopkins neurosurgeon late Friday afternoon. I met a friend for coffee yesterday, and I broke down for the first time. I realized I’ve been holding everything really close in the silence and the waiting. As sure as it was time to be quiet and still, I now need safe places to lament the hard that’s coming.
When I make the call to Baltimore today to officially reschedule everything will change. My body will leave my skin. My brain will leave my head. My heart will leave my chest. I will stop eating and sleeping well. Everything will become fast forward. Nothing will change about my God.
This morning my family left for school and work, and I sat remembering one of my favorite passages about waiting: “‘The Lord is my portion,’ says my soul, ‘Therefore I have hope in Him.’ The Lord is good to those who wait for Him, to the person who seeks Him. It is good that he waits silently for the salvation of the Lord.”–Lamentations 3:24-26 I prayed for strength to do each next thing and for complete surrender and dependence on my good God.
You’ll notice a few changes here on my site. I’ve added a specific place for Team Danica posts. If you subscribe at the top you will receive updates in your email. So many of you are asking about next steps and what we need. I don’t have specific answers for you. I plan to mail prayer cards to those of you who’ve faithfully prayed and supported us once we have the true surgery date.
“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.”