Archive of ‘Music’ category

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

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ButterflyOpenHands

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

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

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

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

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

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

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

Four years we’ve been here.

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

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

The provision has always come.

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

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

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

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

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

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

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

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

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

I know it for sure.

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

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

Seven years we’ve been here.

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

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

The provision has always come.

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

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

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

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

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

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

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On Receiving. An Open Letter of Gratitude. A Dan Post

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FamilyLane (2)

“The only way I know to be honestly willing to receive hard things as gifts from God is to consider how they foster the fruits of the Spirit: love, joy, peace, patience, kindness, goodness, faithfulness, gentleness and self-control. Even the best gifts may come with an unexpected cost. Every gift changes something–the shape of the day, the balance of a relationship, or just the space available on a shelf or in a drawer. To receive it is to accept that shift, slight or dramatic, and to make an adjustment. When Jesus gathered the disciples after the Resurection, he conferred on them a gift that changed them and the course of history when “He breathed on them and said to them ‘Receive the Holy Spirit.'” It wasn’t what they were expecting. Nor, when the Spirit comes to us, with inspiration or direction or unexpected comfort, are we fully prepared. But we can practice the open-heartedness that says “Yes–thank you–I accept,” whatever it may cost, knowing the gift, yet to be fully disclosed, holds more promise than we imagine.”–Marylin McEntyre, Word by Word: A Daily Spiritual Practice

I’m sitting here in a recliner in the infusion room at the cancer center, eight long hours into my day of IV medications and slow Rituxin drip. It’s the longest I’ve been away from Danica in over five weeks. I feel like a piece of me is missing. I thought I might finally exhale today. I’ve desperately needed time alone. Unfortunately the TV has been blaring talk shows and soap operas for an elderly lady in the back row. Even my ear buds and peaceful music cannot drowned out the raucous sounds. I’m sicker than usual and frustrated at my inability to accomplish anything except breathe in and out. I brought a stack of thank you notes addressed and stamped, but I haven’t been able to write the same old gratitude. Nothing I say can fully express the depths of pain and the heights of joy that come from receiving the love you’ve shown us.

Dan wrote and emailed me the following post Christmas day. His words and the heart behind them overwhelmed me. If you know my Dan you understand he is the “strong, silent” type, but his rivers run deep and true. He found a new way to say “Thank You” when I cannot.

I volunteered to work today, Christmas Day, as a small sign of how grateful I am to my employer. I was out of paid time off when I requested FMLA for our very open ended trip to Baltimore. They generously paid me for the time while we were in Maryland for Danica’s surgery. My abbreviated five hour shift on one of the slowest days of the year gives me plenty of time to think back on 2016 and offer a husband and father’s perspective on what’s transpired. Monica is the writer in our family, but she’s asked me to write a Christmas letter most years. It brings a new voice and perspective to the one she frequently shares here and on social media. I feel like you could scramble the dates on most letters I’ve written, and it would all still apply except for small nuances. My dad was at the hospital for Danica’s surgery. While hugging me goodbye the day after he said, “It’s been a hard ten years.” It felt strangely good to have someone so close to us validate the decade of extreme difficulty our family has suffered. I’m unable to talk about it most of the time.

When I try to articulate the feelings I find myself back at my favorite Bible verse, II Corinthians 12:10,

“For the sake of Christ, then, I am content with weaknesses, insults, hardships, persecutions, and calamities. For when I am weak, then I am strong.”

The second book of Corinthians is a letter from the Apostle Paul to the church at Corinth. It describes some of the challenges he faced upon his many travels spreading the word of Christ Jesus.

“Five times I received at the hands of the Jews the forty lashes less one. Three times I was beaten with rods. Once I was stoned. Three times I was shipwrecked; a night and a day I was adrift at sea; on frequent journeys, in danger from rivers, danger from robbers, danger from my own people, danger from Gentiles, danger in the city, danger in the wilderness, danger at sea, danger from false brothers; in toil and hardship, through many a sleepless night, in hunger and thirst, often without food,b in cold and exposure. And, apart from other things, there is the daily pressure on me of my anxiety for all the churches.”

Many of you are new readers here, but if you have been following since Monica began old Team Danica blog in early 2010 you will spot a few parallels between Paul’s travels and my ten year journey alongside my wife. Weight training in the gym is my only real “hobby.” The phrase “For when I am weak, then I am strong” has a certain resonance in a simplistic way. My personal weakness is the anger produced from the recurring futile question, “Why is this happening to my family over and over again?” This anger leads to a mental push in the weight room where I’m usually able to dissipate this negative energy before returning home to do what needs to be done. Working out has long been my therapy of choice. But Paul is not referring to physical strength in this passage. Paul is referring to the Grace of spiritual strength to endure.

My family opened our Christmas gifts the day before Christmas. I heard Monica mumbling drowsily around 7 am, “Sounds like the girls are up already.” Immediately this casual observation created a huge warm spot in my heart. I was comforted in realizing our two daughters were safe in our small warm home, and we were all together. Nothing about the holidays this year feels celebratory or nostalgic. Monica, Danica and I are still processing much of the trauma from the surgery and hospital stay. Our usual family Advent worship was non-existent except for our reading of the Christmas story from the book of Luke last night. Delaney has been pushing to finish her semester and exams and feeling cut off in some ways from the hard we lived without her while we were away.

Only a freshman, Delaney is already focusing on post-high school life. I like to believe the independence she has learned being apart from her family many times since Monica’s long hospital stay during her pregnancy with Danica is an asset towards her accomplishing her goals. She sees the world as an adventure but maturely understands planning and hard work are the keys to success. She has a faith in God but knows walking on water is rare and rowing to shore is the usual course. Danica is still recuperating from surgery and will be in a neck brace throughout winter. She will return to school part time at first. Her healing well offers the amazing hope of the most full life she has ever known. Being five years younger than her sister, she still displays the outward affection most teenagers have outgrown. She likes to snuggle and will reach out to hold hands without asking. She is protective of her mother’s feelings and keenly aware of her pain. She will often ask “How are you feeling mommy?” and follow up with a hug. They have a connection that will play out much differently than Delaney and Monica’s relationship. During a particularly painful moment in the hospital Monica said, “She is the bravest person I know,” to which I replied, “It’s like you are looking in a mirror.” I am in awe of them both.

Monica’s health struggles and disability remain and continue to be a source of my weakness and anger. She has been pushing herself since her own emergency fusion just six weeks before Danica’s surgery. She is experiencing unsettling pain on the right side of her skull base. All the signals of an AE/PANDAS flare confirm she needs her next scheduled chemotherapy treatment tomorrow. When her physical condition plummets to these low valleys I am mentally right there alongside her. This is by far our greatest challenge in our relationship. I get my “life” energy from her when we are physically close. As I try to fend off the toll of age by staying as fit as possible, time has ravaged her body. Of prominence is the new long scar on the back of her neck and the way she cannot bend it forward or backward or side to side. I think it makes her look valiant and sophisticated. She has changed significantly since the day we met. I believe God is using her to show us all the true meaning of Grace.

Paul could be blamed for taking pride in all of his extraordinary sufferings in the name of Christ thus possibly placing himself on a pedestal above all other Apostles. But verse nine reads,
“And He said unto me, My grace is sufficient for thee: for My strength is made perfect in weakness. Most gladly therefore will I rather glory in my infirmities, that the power of Christ may rest upon me.”

Matthew Henry’s Commentary notes, “When we are weak in ourselves, then we are strong in the Grace of our Lord Jesus Christ; when we feel that we are weak in ourselves, then we go to Christ, receive strength from Him, and enjoy most the supplies of Divine strength and Grace.”

No one embodies this verse more so than my wife. In weakness Monica receives the strength to care for others. Her thoughtful care packages shipped and received are familiar to many of you. She is always willing to listen to and provide encouragement to others in need. When possible, the experiences from her twenty-four surgical procedures help many patients answer their own medical questions and concerns. She still believes a slow pen to paper letter is the best means of showing one cares. I’ve seen her work through the great loss of a successful career she loved to the humble place of serving through prayer and encouragement instead of doing. Though her persona may change during times of pain, her trust in God rarely lets her outwardly complain. I admire her passion for books, her commitment to reading the Bible often and her time on her knees at her prayer bench. After all these years of marriage, all of the surgeries and scars, when I hug my wife, it feels like my whole world resets and I can continue on. Holding her immediately gives me calm. There is something about her, about us, when we are together we experience true love and even peace.

In contrast to Monica, I seem to do what is required to make it through the day drawing upon Grace in a different way. God’s love demonstrated to us through you is a huge part of His strength being made perfect in my own kind of weakness. A husband and father wants to feel in control. I want to control our wealth, our health and our happiness. I want to have the power to change what is wrong for my wife and my girls. I am committed to the path that is laid out before me, but I go along often times with resentment for that which I cannot control. My Grace comes from those of you who have taken it upon yourselves to help me support my family. Some of you have been helping us faithfully for the past decade of trials. A few of the many recent expressions of love include my aunt’s elaborate hand-made cards accompanied by prayers and support; My brother’s church in Mississippi sending prayer and support; A friend of my sister in-law in West Virginia with no real family of his own sending Holy Spirit led love at the most needed times over the past few years; Friends who have their own serious health concerns like fighting cancer still taking the energy and resources to encourage and share; Those willing to drive anywhere at any time of day to help, especially since Monica cannot drive since her most recent fusion; Those willing to take in our Laney and our Twixie puppy while we traveled to Maryland; A retired couple with a large family of their own who has adopted us as part of their family including us in an “inheritance” of sorts that our parents are unable to provide; Delaney’s tuition to Lake Center being paid year after year by her great-grandmother; The staggering love through donations from your giving and sharing and praying that have literally given Monica and Danica access to the best medical care possible; Cards and gifts from each family in Danica’s class and surprise caroling at our door to cheer us; Meals showing up on our table from people we’ve never met but are praying for us; Christmas gifts under our tree from many who wanted our girls to have some kind of abundance even in our need…All this and so much more has helped me show strength in times of weakness. Your love has been Grace to me.

Monica tries to write an individual note for every act of kindness, but there is really no way to cover them all. I see her heart to never let even one of you think we take your sacrifices and care for granted. Please know how important it is for me to express how grateful I personally am to everyone reading this. Understand how much we appreciate your time, your generous gifts and most of all your prayers for strength and healing. I hope against hope that 2017 will be a year of more normalcy for our family. Although there will be continued recovery for our Danica incuding careful watch over her fusion and regular chemotherapy for Monica indefinitely we are asking God to give us a year without any surgeries. We look forward to sharing breakthroughs of light and life with you so you can feel part of our success enduring and overcoming all the challenges we have faced through Christ Jesus. I am committed to my family, my marriage and whatever is to come no matter what. At the end of the day, when my two daughters are asleep in their cozy rooms across the hall, my wife is snuggling beside me with her Twixie puppy, and I have but a moment to think about my life, I am spiritually moved to give thanks.

Saturday night, New Year’s Eve, Monica and I plan to let Danica stay overnight at her parent’s house and Delaney with a friend, and we will go on a date and have a night alone in our own house. I emailed Monica last week and asked her to marry me again. I know Grace because ten years of hardship that would have broken most marriages and families apart have solidified a kind of fierce and rare love I can scarcely believe exists. I recently told my girls I wouldn’t change one thing about my life, because if one decision, even the seeming missteps and failures, had been different we wouldn’t be here together now. I’ve lost all control over the things the world tells me I’m supposed to be planning and providing for my family. There is no 401K or college funds or even a nest egg. We may never own a home again. Instead I’ve humbly learned to receive and trust and say “Thank you.” I’ve learned this beautiful way of manna living is as much a miracle today as it was the first time it showed up on our doorstep, and I’ll keep waking up each day calling it gift.

This beautiful Nichole Nordeman song has long been on our family playlist. Gratitude. It’s ALL Grace.

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Quiet. Soft. Slow. A Team Danica Update

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Come
“The theology of the Tree, of the Cross, always seeks the presence of God in the belittled gifts of the world…Because in the rush, in the hurry, in our addiction to ­speed –—​­ there might be miracles if we slow and don’t step on the unassuming shoot that sprouts from the stump.”–Ann Voskamp

It’s Sunday morning. The Lord’s Day. Without attending church I still wake to play hymns and spiritual songs. I drink my steaming cup of coffee with my neglected Bible open. I desperately ache for a glimpse of God and a Word of truth.

I’ve forgotten how to do this still, quiet and sacred thing. I’m afraid of it, because I’ve felt so cut off from fellowship with God and others. I’m not ready to loose the dam of emotions that will surely flood this place when I allow myself to process what we’ve been through the past few months and particularly during the days and nights in the hospital with Danica. There will be a time. I can’t risk traveling there yet, but I can be HERE, NOW.

The continued pain I am having, Danica’s restrictions and gradual healing, our financial insecurity and all the wondering about what the new year will hold for us is being covered by the soft falling snow I’m watching outside my window. I’ve prayed for this peace over and over. I thought it might come in a crazy miraculous way like water into wine. I imagined something sudden we could shout from the rooftops. Instead it is growing like a baby in my womb. I trusted the seed was there before I could even feel flutterings. I have the stretchmarks to prove it. I am great with child. My hope and expectation are sure, and I believe new life is coming. He makes all things new. I believe this. Most of the time I believe this, but it’s true even when I don’t.

This peace and joy and hope are slow. At times they are barely perceptible in the hard, but they are a shoot straight from the stump of Grace.

Henri Nouwen writes:

“A shoot shall sprout from the stump of Jesse, and from his roots a bud shall blossom. The spirit of the LORD shall rest upon him . . .”–Isaiah 11:1-2

Our salvation comes from something small, tender, and vulnerable, something hardly noticeable. God, who is the Creator of the Universe, comes to us in smallness, weakness, and hiddenness.

I find this a hopeful message. Somehow, I keep expecting loud and impressive events to convince me and others of God’s saving power; but over and over again I am reminded that spectacles, power plays, and big events are the ways of the world. Our temptation is to be distracted by them and made blind to the “shoot that shall sprout from the stump.”

When I have no eyes for the small signs of God’s presence – the smile of a baby, the carefree play of children, the words of encouragement and gestures of love offered by friends – I will always remain tempted to despair.

The small child of Bethlehem, the unknown young man of Nazareth, the rejected preacher, the naked man on the cross, he asks for my full attention. The work of our salvation takes place in the midst of a world that continues to shout, scream, and overwhelm us with its claims and promises. But the promise is hidden in the shoot that sprouts from the stump, a shoot that hardly anyone notices.

I’m paying attention. I’m watching. I’m waiting.

I see Him in your cards and letters full of love. I see Him in the hundreds of facebook posts of prayer and shares I’m just now having a little time to filter through. I see Him in your generous donations to help with our overwhelming medical bills and new deductibles that take our breath away on January 1st. I see Him in the meals on our table prepared with tender care for us and yummy cut out sugar cookies I wish I had the strength to bake and decorate. I see Him in the gifts showing up on our doorstep making Christmas for my Dan, Delaney and Danica. This is something my mama heart will always long to give them, and something I couldn’t do at all this year.

Thank you.

All of this kindness creates the fertile soil for the shoot straight from the stump of Grace.

All of this is Dayenu. Enough. More than enough.

Three weeks ago we were arriving in Baltimore tangled in hope and fear. Two weeks ago we stood vigil by our little girl with a collapsed lung and burning with fever. A week ago we were in a hotel in Maryland aching to come home. We are here, now. Last night we all crawled into the big bed snuggled under a pile of blankets and watched Elf. It seems such a simple thing. For us it was a layer of healing over months of upheaval and survival. We belly laughed together. I felt a gentle kick…a quickening of Jesus in a silly and secular movie. Grace growing up in a least likely place.

Our Hope remains.

I’m playing this song on repeat today. QUIET. SOFT. SLOW.

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Yesterday’s Pain. Will You Give Us a Hand? A Team Danica Update

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miracles

“In the godforsaken, obscene quicksand of life,
there is a deafening alleluia
rising from the souls of those who weep,
and of those who weep with those who weep.
If you watch, you will see
the hand of God
putting the stars back in their skies
one by one
Yesterday’s Pain
Some of us walk in Advent
tethered to our unresolved yesterdays
the pain still stabbing
the hurt still throbbing.
It’s not that we don’t know better;
it’s just that we can’t stand up anymore by ourselves.
On the way of Bethlehem, WILL YOU GIVE US A HAND?”–Ann Weems

We have weak hands and feeble knees this morning.

We were discharged from the hospital yesterday late afternoon and made our way to a Springhill Suites in Gaithersburg for our remaining time here until Danica sees Dr.Theodore again is cleared to travel. Discharge went as smoothly as any I’ve ever been a part of. Many departments assisted in helping us with the details of support and care after leaving. This included arranging for physical and occupational therapy to come here to the hotel so there would be no lapse in Danica’s healing progress. Danica and I had negotiated a plan for taking her oral medication that seemed to be working after a horrific period of trying to transition her that included vomiting and hysterics. They were ready to bring in behavioral psych for an evaluation…something I opposed as strongly as discharge to a rehab facility. She had taken several doses with no event, and I thought she was ready. There are several beautiful photos of us leaving the hospital smiling. The pictures I don’t take tell a larger part of the ongoing struggle.

DCvideo

We arrived safely to Washingtonian Center. Many of you know we lived here for over three years. Danica was born just down the road at Shady Grove Adventist Hospital. This feels like home to us. The Children’s House was a convenient and much less expensive place to stay pre-op and a perfect crash pad within walking distance to the hospital for Dan and our things during Danica’s week long hospitalization. Unfortunately the building and rooms are very old. The rooms are not set up for the kind of accessibility and devices Danica needs for her particular kind of recovery. This hotel room is arranged in the traditional Springhill Suites style that has always worked best for our family during trips for medical appointments. We have a small refrigerator and microwave, a sofa that folds out into a comfortable bed for Dan and a king size bed for Danica and I to snuggle in that keeps me at her side constantly throughout the night. Most importantly the ground floor suite has the extra room for ambulating, grab bars in the right places to assist Danica and a handicap shower with seat and bars. It is perfect. We are close to every possible kind of food to help get Danica to eat, and the Target which includes CVS pharmacy is right here too.

We checked in and EXHALED. We had done each next thing and graduated to a place closer to getting home.

Within the first hour of check in the manager of the hotel knocked on our door with a gift bag of treats for Danica. I’ve written before on my old blog about extraordinary customer service at many Marriott hotels across the United States as we’ve traveled for the best care. These are not Ritz Carlton hotels, but they carry this level of service across their brands in the training of exceptional employees. This gift bag came from THEIR heart and not a company manual. This was unexpected grace.

SpringhillSuitesKindness

We dosed Danica with oral Tylenol and Valium and replaced her Lidocaine patches around the large wound on her back just before leaving to try and make the drive here the least painful as possible. She was so visibly thrilled to be here without the constant rounding of doctors and nurses coming in and checking vitals. We were all thrilled. Dan ran out to get her favorite macn’cheese from The Corner Bakery. She ate the most we’ve seen her eat in over a week. I held off on the Valium dose until closer to bed so we could possibly not do any meds in the night and really rest. She was hurting. Her biggest complaint is not actual pain but the tightening and spasms of the muscles cut in the neck and her back. The PTSD reared it’s ugly head. I was tired and having a bit of a panic attack myself as the struggle in coaxing continued. Dan was trying to be helpful, but he had not been part of the majority of our negotiating the deal to take this particular medication if we were allowed to leave the hospital. She did tip the tiny amount back but proceeded to gag and throw up the medication and ALL the macn’cheese. I fell apart. She kept crying, “I’m sorry. I’m so sorry. I just can’t do it.”

I slept some last night holding her sweet little hand with our feet touching under the covers. She was restless. This morning I snuck out into the lobby for coffee and came back to begin my phone calls to make a new plan. In the last hour the neurosurgery resident has worked out for Valium in pill form to be called into the pharmacy here. Dan will go to pick it up, and we will try to crush it in something she will eat. We’ve tried this before. PLEASE pray we can find a way to get her to take this regularly without the battles and without throwing up.

Brain and spinal surgery is hard.
Hospitalization is hard.
Doing the next minutes and hours, days, weeks and months of healing and recovery on our own is perhaps the hardest.

Our hands are feeble.
Our knees are weak.

Thank you for all the ways, big and small, you’ve given us a hand. I’m receiving messages and emails about how you can help provide some kind of Christmas for us and how you can help when we return home. I plan to take some time today to work on the details and share. At this point I realize I will not be able to do any shopping or planning. Your love in these specific ways will be the hand we need.

Even miracles take time.
Our Hope remains.

“Strengthen the feeble hands, steady the knees that give way;
say to those with fearful hearts,
‘Be strong, do not fear;
your God will come…'”–Isaiah 35:3-4

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

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ICUBrave

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

I stopped at the chapel alone.

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

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

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

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

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

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

Broken

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

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

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

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

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

Christa Wells

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Just Show Up. Part Two. The Ask. How You Can Help. A Team Danica-Monica Update

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“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.

Pre-surgery
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 mkayesnyder@gmail.com. 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.

Return Home
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.

Needs

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.

Christmas

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.

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Three weeks. Won’t Turn Back. A Team Danica-Monica Update

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Chiari Miracle 001Chiari Decompression, November, 2009

ChiariMiracle2Chiari Decompression and Cervical Fusion, October, 2010

Three weeks.
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.

Three weeks.
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.

PUSH.

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.

PUSH.

Three weeks.
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.

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Morning Prayers. For Dan. A Team Danica-Monica Update

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Dance2

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.

Our Hope remains.

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The Quiet Time. The Waiting Time. A Team Danica Update

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Waiting
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.

His Hope will not disappoint.
Our Hope remains.

This song from All Sons and Daughters album Poets and Saints is on repeat.

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.

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Surgery Scheduled. Steady My Heart. A Team Danica Update

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Trust
“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.

She believes.

He’s here.
He’s real.
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.”

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