Archive of ‘Team Danica’ category

Begin. One Word. A Team Monica Update

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

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

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

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

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

BeggingBowl

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

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

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

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

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

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

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

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

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

My word for 2017:
BEGIN.

DesertSun

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

ZonaMKS

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

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

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

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

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

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

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

This is my heart song tonight. Soli Deo Gloria.

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Bloom. A Team Danica Update and 2012 Repost

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Danica6weeks

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

It’s true.

The healing.

The absence of pain.

The hope.

The miracle.

It’s true.

Six weeks later it’s all true.

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

It’s true.

The provision.

The love.

The hope.

The miracle.

It’s true.

Twelve weeks later it’s all true.

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

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

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

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

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

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

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

Hanging up stuff

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

Signing in

Danicaand MrsBarber

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

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

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

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

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

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

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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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Lost and Gained. A Team Danica Update

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Hardware

“I have lost nothing
in my life
that I could not find again
with God.”
-Corrine De Winter

It’s raining in Baltimore. (Cue Counting Crows.)

Over the past 48 hours Danica’s little lungs have inflated again with vigilant respiratory work. (Think bedside prompting to inhale and exhale deeply into two different devices every fifteen minutes even though you know every breath is hurting your girl in a place you’ve been wounded yourself.) Her lungs are only slightly diminished now. Her constant and sometimes burning hot fever of six days is gone. She’s stepping down from continuous dosage of IV narcotic pain medication to trying oral substitutions in movement towards discharge. She did some tough physical therapy and occupational therapy today. She joined other children for a fun science experiment making snowmen. She had a visit from the most amazing golden retriever, Milo, who loosened a full smile and prompted a deep belly laugh. She had a very painful complete shower. She cried through the entire thing. I felt relieved to see her allowing herself to lean into the truth of this hard. There is something innate from her struggle in the womb, her warrior past and also learned behavior from watching me navigate post-op over and over again…we move forward like soldiers. Dramatic emotion is mostly a waste of time and energy we cannot afford. The next thing comes. We hurt so badly and hope so fiercely we don’t need to even say it. The fact we are still here doing this is the proof.

PTStairs
PTC4
Snowman

We thought we’d made the most possible progress. Then the bottom dropped out. Danica refused to take her oral Valium. This is the one medication she needs no matter what. How does a little girl who can brave brain and spine surgery and call her ten pain a three refuse to take a few ccs of liquid medicine from a cup? It’s the second time since being here something prompted PTSD for her as well as Dan and I. We used to have to hold her down to squirt her meds in her little mouth. Often she would spit them out while screaming. She became so worked up, crying hysterically, turning on Dan and I who were trying to be her allies and fussing at the kind nurses trying to help. I called a time out. I left the room. It’s only the third time I’ve looked her in the eyes and told her I needed to step away from her. I found my way into a little sitting area and bawled my eyes out.

Sitting next to a beautifully decorated tree outside the room I remembered it is Christmas soon. I remembered tonight Danica’s classmates were having their Christmas program. I felt this jagged breath of complete sadness. Not self pity. Utter sadness. It was a deep seeded ache for simple milestones in my girl’s life she cannot make up. They are gone. Lost.

It’s easy to feed on loss when days and weeks and months have turned into years of giving up everything we are told means so much to focus on just surviving. Even after ten years there are still those who innocently say something pithy about this being a “season” that will pass for us. They head out to the park to watch their children run and play in the snow or facebook about a special concert or the ballet or a simple shopping trip to the mall to visit Santa. They pick out shiny outfits with matching shoes and decide on Christmas cards. They look at their December calendars full of invitations to parties and celebrations with people who are glistening in the fullness we are supposed to feel this time of year. Real or imagined I see the parts being played out around me like I am watching a perfect winter scene in a snow globe.

This loss is much longer than a season for us. This loss will not pass. This is our life. Wrapped in strange newspaper recycled with the stories of days of exhaustion and pain and long nights in the hospital…tied up with twine borrowed from something useful or given to us in charity our celebration is no less real than yours, but I can promise you it feels different because it has to be.

I think back over our “holidays” since 2007, and there are very few things that look or feel like I think they should. This year is no exception. My Laney will play the flute in her first high school Christmas concert Thursday night, and we will not be there. How many times since she was four years old have I been absent from the snapshot moments of her life? Someone else will take her picture, and I will miss it . . . again. Someone else will post on facebook my brave and beautiful girl, and I will be here losing the moment that can’t be lived again. Gone. Lost.

I’ve not left the hospital since my one walk and shower last Thursday when my parents were here. This is not a masochistic falling on my own sword kind of commitment to Danica. This is love. This is the sacrifice of a mother who is the best advocate for her best care in every detail of this difficult hospital stay. We know the really hard part begins the second we leave and have to do this on our own. Dan must return to work. I will not have a day to crash and regroup. I will need to be with my girl every second she is ambulating. I will be responsible for helping her to the bathroom during the day and the night, bathing her and dressing her. I will keep schedule of medications and document every detail of her recovery. I will lobby for the best home health and fight to get the adaptations we need to make our home as safe as possible for her recovery. My warrior mama heart drives this broken body farther than I ever thought possible. I can only describe this as supernatural strength and great Grace from a good God. Still, I wonder when the crash will happen. Not if it will but when it will.

Dr. Theodore, Danica’s spinal neurosurgeon, came by late this afternoon to check on us and talk about our discharge expectations and possible days and time to see him again in clinic before being cleared to travel home. He did the most telling thing. He came in and sat next to me on the little blue couch, looked me in the eyes and fully heard my questions and concerns. He showed me the first image I’ve seen of Danica’s new fusion hardware. I cried. I’ve felt like 2016 has been another lost year until right now. This image may mean nothing to most of you, but I can tell you it is everything. A second miracle.

We have challenges. My mind is swirling with the hundred things I need to do for continuation of care. We need to buy Danica a new mattress. We need to buy plane tickets home. We need to make further accommodations to our home for Danica’s safety and to assist me in her care.

I need to find some way to make some kind of Christmas for my family.

The day after Christmas, Monday, December 26th, I am scheduled for all day chemotherapy. I have to get one more treatment in before my insurance deductibles reset on January 1. I need to have a scan here in the Washington area to look at my recent fusion. I’ve not wanted to speak of the pain I’m in or the damage I may have done by my participation in Danica’s care the past week.

I’m lost. There is no way to plan these days.

I’m empty. There is literally nothing left in my tank.

I’m afraid. What if my brokenness impedes the best healing for my girl.

He is God. I am not.

This is Dayenu. Enough. More than enough.

Thank you for never tiring in your supplication for us.

Thank you for your giving hearts. It makes some of this needed care a reality for our Danica Jean to give her the most whole life possible. Thank you for showing me grace in slow gratitude for your love. I carry it with me into these days and nights.

Danica is sleeping quietly in the dark room, and I must try to rest before a 4 am med administration and the rounding that begins most mornings around 5:45 am. I cannot wait for a full night’s rest with all my medications on board.

Keep praying! I know He is doing a thousand things in this one thing. I know it. I believe everything lost will be restored in exactly the way Dan, Delaney, Danica and I need and even in ways we wish for.

#SoulBusiness #OurHoperemains #TeamDanica

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

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ICUBrave

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

I stopped at the chapel alone.

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

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

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

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

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

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

Broken

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

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

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

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

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

Christa Wells

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Imperfect Birds. A Team Danica-Monica Update

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

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

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

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

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

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

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

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

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

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

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When All Else Falls Away. A Team Danica-Monica Update

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Winterlight

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
with me
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.”

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

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Galveston angel2

“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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