Archive of ‘Advent’ category

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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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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Runaway. Advent Pursuit. Advent Rescue. And a giveaway

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Runaway

The Runaway Bunny was a favorite of both my girls when they were younger. Above is a photo of the well worn board book I now keep in their trunk of childhood treasures. Hundreds of times over I whispered the sweet story of the little rabbit trying oh so hard to flee from his mother. His persistence was ever answered by her patient pursuit of love no matter how far he ran or how deeply he hid.

Several years ago on a dark and frigid night I attended an intimate Christa Wells concert at a tiny stone church in Akron. I was not well and should have been in bed, but Christa’s music had been a lifeline of truth for me, and I needed to be close to her gift, meet her face to face and thank her. Performing with her was Jess Ray, an indie artist I’d never heard of before. I was sitting just feet away from the strum of her simple guitar and liquid voice infused with a hint of scratchy LP grit. I was completely taken in by a new song she had written around the framework of the children’s story I knew by heart. Her lyrics stripped me bare. On my way out I met Jess, and I asked her how I could find this song. I needed the words. I needed the music. She told me it wasn’t recorded yet. She had timidly played it for our huddled community that night. I came home and scribbled what I could remember in my journal. One line stood out. “I will leave behind the ninety-nine, oh that you’ll be mine.” Jess eventually recorded “Runaway” on her album titled Sentimental Creatures. It soothes on my peace playlist every night as I fight for rest in my pain.

Listen to it now.

I’ve been running hard.
I’ve been hiding.
There have even been moments I’ve made up in my mind I don’t want to be by His side.
I’ve been stomping and screaming.
I’ve been beating on His chest, because I just don’t understand.

Still, He is here.
Pursuing me.
Searching east to west.
Reminding me.

I will never see the bottom of His storehouse of love.
No choice I make,
No path I take will change His mind.
He will love me.
He will teach me to love Him again.

Listen again.

Sunday was the first night of Advent, but today, December 1st, is when we begin our walk and worship. Since 2010 our family has been celebrating Advent not just with weekly readings and candles but nightly ones using Caleb Voskamp’s handcrafted Cradle to Cross wreath. His rustic way of light takes us on a journey beginning with Advent and continuing through the Lenten season to the Resurrection of Christ. I think we bought one of the first 50 he made. Last year we added Ann Voskamp’s treasure of a book, Unwrapping the Greatest Gift, a telling of the Biblical narratives from the Garden of Eden to the birth of our Savior leading us to His indescribable gift of salvation. In the mornings during my own quiet time I read and meditate on Advent poetry and reflections including worn editions of Watch for the Light: Readings for Advent and Christmas, WinterSong: Christmas Readings from my dear Luci and Madeleine and Accompanied by Angels: Poems of the Incarnation from Luci. It is my favorite time of year for almost none of the reasons or feelings we are told or sold to celebrate. I have never needed the sacred discipline more than I do now.

I am plunging back into a grueling round of plasmapheresis treatments tomorrow. I will have a new port placed in the morning and head to dialysis for the first round. Over the next ten days I will have five rounds with days off in between to rest. I am too weary to remind you here of my complicated diagnosis, debilitating symptoms, past risks and rewards and why I’m doing this again now. I’m simply asking you to please pray for me. I know this works. I also know each time we access my main artery the odds of something happening increase. I’ve waited this long between treatments to try and let my venous system heal. I feel horrible during this process, particularly the evening after the pheresis. I’m thankful to have the opportunity to do it outpatient and locally, but it is a double edged sword. I need to be in bed and resting when I’m not at the hospital. This never happens as it should. In April, the last time I had treatments, there were complications, and I was hospitalized. Please pray for my husband. He took me today for an appointment with the overseeing physician and for labs. He told me he feels like he’s been kicked in the gut over and over again. Please pray for my girls. They are old enough to understand their mama will never be truly well. This is not an illness we get through or conquer but rather a way of living for all of us.

The past few weeks I have been increasingly frantic. My neuropsych symptoms war with my physical fatigue and the demons of infection cross my brain barrier and whisper lies about what my life is worth.

I’ve been running hard.
I’ve been hiding.
There have even been moments I’ve made up in my mind I don’t want to be by His side.
I’ve been stomping and screaming.
I’ve been beating on His chest, because I just don’t understand.

Still, He is here.
Pursuing me.
Searching east to west.
Reminding me.

I will never see the bottom of His storehouse of love.
No choice I make,
No path I take will change His mind.
He will love me.
He will teach me to love Him again.

He left the ninety-nine to search me and know me.
It is an Advent rescue of a runaway.
Friends, this is the Gospel.
He came to seek and save.
When everything else falls away I am safe in His arms, and He is rejoicing over me.

“So He told them this parable, saying, ‘What man among you, if he has a hundred sheep and has lost one of them, does not leave the ninety-nine in the open pasture and go after the one which is lost until he finds it? When he has found it, he lays it on his shoulders, rejoicing.'”–Luke 15:3-5

First Day of Christmas Giveaway
Tell me about a time you ran away. How did God pursue you and bring you back into the fold? I am giving away a copy of Jess Ray’s Sentimental Creatures in my first of twelve days of Christmas giving. Share this beautiful song with someone on social media and comment here to be entered. I will randomly choose a winner on December 12th. Stay tuned for new posts with more giveaway goodies! Blessings to you and yours as you begin your Advent journey.

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Today It’s Just Not So

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Justnotso

It is Christmas Eve morning. I’m sitting here in the glow of the tree lights with a TENS unit on my left arm and hand. A nurse hit my main nerve during a blood draw on Monday. I’ve had electrical shock pain every time I move my thumb since and my left arm is pretty much useless. I was back to the hospital before 7am this morning for more labs. The unit just called and wanted me to wait until 4:30pm for treatment. I broke down in sobs. They are going to try to get me in at 1pm. I will come home and fall into bed when it is finished.

In the past few weeks I’ve read post after post written by women on the subject of showing themselves grace when it comes to the crazy busy pressure of their family traditions, gift buying, gift wrapping, cookie making, parties, programs and their expectations of creating the overall look and feel of Christmas for their families.

I would give anything to be healthy enough to participate in this adrenaline fueled season. ANYTHING.

My Dan just finished vacuuming. He is emptying the dishwasher while he runs the first of several loads of clothes that need laundered. We have no food in our refrigerator. He will brave the grocery store for a few things today. Money is tight. He gets paid Friday. This is no different than any other Wednesday before pay day, but it is Christmas. The girls will go with him because my mom will be taking me to the hospital.

The girls Santa gifts, one each, are in a Rubbermaid high up in the garage. Dan will have to find time to hide away and wrap them with special paper. This is something I love to do. We usually have party food as a tradition on Christmas Eve. I make h’ordeuvres, crusty bread with brie and crab dip. Dan and I toast with a glass of wine. We open Christmas jammies. We sit snuggled around in the twinkle of our tree and light the last Advent candle while we read THE Christmas story. Danica is still a believer. She would write a letter to Santa and carefully put out his treats on a plate with a glass of milk and scatter carrots and reindeer food in the back yard. The girls go to bed early and don’t dare leave their rooms. It’s finally one more sleep. Dan and I wait until we know they are out and then bring the gifts from us and Santa out and stuff their stockings. We feel close. We know this season is a line break in our family story of loss and disappointment. We have tried to make it something meaningful and Christ focused and joyful no matter what.

This year is different. It seems even harder than 2011 when I was recovering from brain surgery and fusion and came home to my parent’s basement Christmas Eve for twenty-four hours with Dan and the girls. I was in such a fog I barely remember even being there. I remember my pain and short temper but knowing Delaney and Danica were mostly oblivious because so many people stepped in to surrogate that year. My dad played Santa and gifted us our dear Twixie. This made everything okay.

Dan is waiting for someone from Craigslist to come and buy his weights. They were his birthday present this year. Working out is his only hobby and the one thing that keeps him okay mentally. I don’t think it is a “Gift of the Magi” thing. He is just feeling the pressure. He’s thinking of a new year with my trip to Maryland on January 7th for a scan of my recent fusion and a visit with my neurosurgeon. He’s thinking of my canceled bone density scan and mammogram that will need to be done in January on a new deductible. He’s thinking of my cardiologist appointment in Toledo. He’s thinking of our first quarter trip to Cincinnati for Danica’s scans and visits when we still owe them from last year’s trip because it is always the beginning of her personal deductible. He’s thinking of how we floated a few bills to buy presents for the girls. He never thinks about himself.

I hurt for him most. He has loved past what someone should be asked. He has sacrificed every possible personal goal for a career or personal pleasure to be my husband and a father to our girls. Any moment he is not at work he is here serving us. Sunday he gently washed my hair over the sink, because I cannot shower. I looked straight into his eyes to understand how each assault on my body is one on his heart. We are one even though physical union is almost impossible in these times of illness and treatment. He has never once complained or made me feel an ounce of guilt about the long seasons of our life when the physical part of our marriage is completely unfulfilled. I ache. He aches. He would never walk away. When all the busy work is done, and a day is so hard we can barely breathe, he will curl up and sleep. He says sleep is the only place he isn’t hurting.

I appreciate all the notes of love reminding me that Satan is attacking my mind and heart with sadness. Thank you for pointing me to Jesus. It is not expectations about Christmas that cause my heartache or even the very real feelings of failing my husband and children when it comes to layering years of tradition as a foundation for their lives. Our walk is painful no matter what time of year.

I do not have amnesia. We do not have amnesia. God has provided for us every day. He has loved us through you over and over again as I have had treatments and surgeries. We are ever blessed in the midst of this never ending journey.

We are grateful for your love this season.

A friend brought cookie dough and decorating icing and sprinkles since I have not been well enough to bake. Dan and the girls did this together last weekend. She and her family also brought the girls a little money to shop for Dan and I and one another. Dan took them last Saturday, and it brought them great happiness. I’ve had many little meaningful gifts from friends reminding me to be strong and never give up. Family has sent gifts so there is an abundance of things for the girls to open under our tree. Everyone knows presents can’t fill the ache, but this is their way of saying they care. My dear Janet and her husband are cooking for us today so we will have a yummy dinner tonight. My parents have taken turns driving me in the early mornings for labs and afternoons for pheresis. This love reminds us we are not alone.

Right now is when I am supposed to circle around to something didactic about Jesus.
I should tell you I’m ever hoping and finding strength and grace minute by minute.

Today it’s just not so.

My God hasn’t changed a bit.
He is holding all this in His hands.
He wrote my days when there were none of them.
He is working all things together for my good, Dan’s good, Delaney’s good and Danica’s good.
He is working all this for His glory.
It is true even when I can’t feel it at all.

This is the gift we will keep unwrapping long after the last ornament is put away.
Day after day; week after week; month after month into 2015 we will wake and run to the foot of another tree. We will sit beneath Calvary and see “When (we) are in the presence of God, it seems profoundly unbecoming to demand anything.”–Francis Shaeffer

Merry Christmas dear ones.

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Star Song

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Dali

Salvador Dali 1969 Lithograph from the BIBLIA SACRA 33 – SANCTUS RAPHAEL ET TOBIAS

We have been having
epiphanies like stars
all this year long.
And now, at its close,
when the planets
are shining through frost,
light runs like music
in the bones,
and the heart keeps rising
at the sound of any song.
An old magic flows
at the silver calling
of a bell,
rounding,
high and clear.
Falling. Falling.
Sounding the death knell
of our old year,
telling the new appearing
of Christ, our Morning Star.

Now, burst,
all our bell throats!
Toll,
every clapper tongue!
Stun the still night.
Jesus himself gleams through
our high heart notes
(it is no fable).
It is he whose light
glistens in each song sung,
and in the true
coming together again
to the stable
of all of us: shepherds,
sages, his women and men,
common and faithful,
or wealthy and wise,
with carillon hearts,
and, suddenly, stars in our eyes.–Luci Shaw

If you’ve read here long or at my old blog you know I love Advent more than any other time of the year. The order of the liturgical season leading up to celebrating Christ’s birth keeps my heart in a circle of never forgetting. It reminds my soul continually how the plan for Redemption was THE only plan. Throughout the Old Testament there are the hints and guesses that grow into clear signs of who would come to save us. I love spending an entire month so mindful of the miracle. Christmas is a big reflection of what God asks us to do with our lives all year long. He wants us to watch and wait. He wants us to draw near to the simple and humble and the human so we can really finally understand what a sacrifice God becoming man was and is. It’s Grace in slow motion, step by step to Bethlehem.

Growing up in Staunton, Virginia our amazing public library had large reproduction art pieces that were framed, and you could check them out to hang in your home for awhile. I was obsessed with decorating and design since I was a young child. I was always wanting to make my space inspiring and beautiful. My mom would let me check out the art from time to time. My favorite was one of irises printed on a grass cloth type canvas framed in gold. We didn’t grow up with much actual art in our home. There were cross stitch samplers of Bible verses and one big watercolor painting of my sister on a carousel hung over our couch. That’s about it. I didn’t have exposure to art through museums or my schoolwork either. It was just something that felt important to me like a good thread count and the right lighting. It was something I was born hungry for like poetry and architecture. It is something we all need and want at some level if we are honest with ourselves. In many ways the place I grew up became the canvas I studied. Watching the seasons change year after year in the Shenandoah Valley shapes your soul for beauty. All art is born from the master artist, our Creator, and I was blessed to live in the bowels of one of His special studios for many years.

Thanksgiving and the month of December are a time for looking backward and forward. As I play this long year in my mind one of my deepest blessings has been a friendship that came out of a strange and unexpected place. It has grown into part of my healing so deeply I don’t know if one would have been possible without the other. We are different in many ways and kindred in just as many. This creates an honesty and perfect iron sharpening iron way of communicating that is rare. We found out early on we both have a love for all kinds of art and need beauty around us in our day to day to be okay. Besides a whimsical collection from an Ohio watercolor artist Dan and I bought at the beach in North Carolina in 2006, which we have refused to part with during all our losses, we don’t own much meaningful art anymore. In our one year lived in and cherished home we have large walls with just empty space which is okay with us and especially me. I don’t want to hang things just to have something there. Everything in my life now really should reflect meaning and sometimes the empty space is just good. It’s part of the waiting for restoration and healing.

Not long after my hardware removal surgery, the second of three major surgeries in a row this fall, my new friend showed up on my doorstep holding a large piece of framed art to borrow. She had been in my room and even spent time lying in bed with me when I was too sick to get up. She could see I spent most of my hours turned on my left side facing a large blank wall. This particular piece of art had been in her bedroom and brought her encouragement through pain. It’s a stunningly painted forest with the richest colors creating a depth you have to trudge through. You have to explore it layer by layer until you reach this little patch of yellow, yes, light, at the very end of your journey. She brought it on a day I felt so hopeless, so sick, so lost in the woods I could not imagine making it through. She left the painting here for me to borrow. We hung it on the big empty wall I face when I am in bed the sickest. No matter what I could see the light. I could move towards the light. The painting changes depending on the day and the mood and yes, the light, and it has never looked exactly the same twice. I am still caught off guard when I stop to consider it. I still cry when I tell the story of how a little block of the purest shade of yellow somehow helps me believe it is going to be okay.

Several weeks later my friend showed up with a religious piece to borrow. It is in our living room over the mantel. Dan and I sat enjoying our coffee this morning discussing this particular piece. Beyond the literal meaning we have our own interpretations. The angel and light overshadow the struggle below of man. It is a hopeful piece. It came from an artist whose friend knew he was agnostic so he asked him to study Scripture and paint a series of work depicting Biblical stories in prayer of stirring his heart to come to see the truths he held dear. I think I will need to return this piece after the holidays before I become too attached, but it has illuminated our simple holiday decorating and speaks to the spiritual journey we are on this and every Christmas season.

Pulled by the tinsel and things and expectation of things I see the angel speaking to us glad tidings of great joy. Sit down. Be still. Listen to how this aching and hurting and waiting will unfold now. I know there were days and weeks and even months without a sign. You thought I had left you here without a Savior. Your suffering and your broken bodies and hearts will be healed by His stripes. A baby born of a virgin is just the beginning of the miracle. You will be saved! Do you believe? Can Redemption happen so slowly it begins as a shoot from a stump? Can it be as simple as a scene in a manger?

Light a candle tonight.

Take one step.

He is coming.

We have stars in our eyes.

(This is a repost from my blog last December with some personal narrative removed. Glynn Young wrote on his blog, Faith, Fiction, Friends, about the importance of art in his life. It sent me back to read this entry. The Dali is returned now and a Marc Chagall is my newest piece on loan. The sun is shining. I’m exhausted, and my treatment has been delayed until 3:30pm today. My dear friend and art benefactor will take me. Since I returned from the hospital this morning for blood draws I’ve been staring straight into the light. I’d rather go blind than look away.)

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Too Much To Ask

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DSC_0170

it seemed too much to ask
of one small virgin
that she should stake shame
against the will of God.
all she had to hold to
were those soft, inward
flutterings
and the remembered sting
of a brief junction–spirit
with flesh.
who would think it
more than a dream wish?
an implausible, laughable
defense.

and it seems much
too much to ask me
to be part of the
different thing–
God’s shocking, unorthodox,
unheard of Thing
to further heaven’s hopes
and summon God’s glory.
–Luci Shaw

Tonight I am facing plasmapheresis treatment again. I could have my cath placed as early as tomorrow. It is hard, and it brings risk, but it has also brought me the most healing and the best months of life. My counselor said today, “Do you know what I’m hearing? I’m hearing you fighting to be well because you have purpose.” It is true. I am completely committed to finishing the book in the first quarter of 2015. I need some measure of strength and health to do this.

I wrote in an earlier post the reasons I don’t ask God “Why?” anymore. Still, I wonder if maybe, just maybe. this is too much to ask of me. I wonder if it is too much for God to ask of my husband and children. I wonder if it is too much to ask of all of you who have loved and prayed and supported us for years on end in a story that is never finished.

I remember.
This is more than I deserve.
This too is Grace.

Madeleine L’Engle wrote,

We are all asked to do more than we can do. Every hero and heroine of the Bible does more than he would of thought it possible to do, from Gideon to Esther to Mary. It is only after we have been enabled to say, “Be it unto me according to Your Word,” that we can accept the paradoxes of Christianity. Christ comes to live with us, bringing an incredible promise of God’s love, but never are we promised there will be no pain, no suffering, no death, but rather that these griefs are the very road to eternal life. In Advent we prepare for the coming of all Love, that Love will redeem all brokenness, wrongness, hardness of heart which have afflicted us.

Tonight I will beg for a heart as willing as Mary’s. Yes, God, even this strange thing I do not understand. Do this thing in me. Use it for Your glory. Burn through every selfish ambition I have to be healed for personal gain. I trust you with this body. I trust you with my family. I trust you with our needs. I trust you with this book. I trust you with my eternal soul.

Be it unto me.

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Who Can Endure?

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“. . . For Who Can Endure the Day of His Coming?”–Malachi 3:2

Angel, cross

When an Angel
snapped the old thin threads of speech
with an untimely birth
announcement, slit
the seemly cloth of an even
more blessed event with the
shears of miracle,
invaded the privacy of a dream,
multiplied
to ravage the dark silk of the sky, the
innocent ears
with swords of sound: news in a new dimension demanded
qualification.
The righteous were as vulnerable as others.
they trembled for those strong
antecedent fear nots, whether goat-
herds, virgins, workers in wood or
holy barren priests.

In our nights our
complicated modern dreams rarely
flower into visions. No
contemporary Gabriel
dumbfounds our worship, or burning,
visits our bedrooms. No
sign-post satellite hauls us, earth-bound but
star-struck, half
around the world with hope.

Are our sensibilities
too blunt to be assaulted
with spatial power-plays and far-out
proclamations of peace? Sterile,
skeptics, yet we may be broken
to his slow silent birth
(new-torn, new-
born ourselves at his
beginning new in us).
His bigness may still burst
out self-containment
to tell us—without angels’ mouths—
fear not.

God knows we need to hear it, now
when he may shatter
with his most shocking coming
this proud cracked place
and more if, for longer waiting,
he does not.–Luci Shaw

Photography by Melissa Thomas. Taken in Rome, Italy. Used with permission.

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