Archive of ‘Music’ category

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

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ICUBrave

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

I stopped at the chapel alone.

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

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

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

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

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

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

Broken

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

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

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

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

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

Christa Wells

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

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

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Chiari Miracle 001Chiari Decompression, November, 2009

ChiariMiracle2Chiari Decompression and Cervical Fusion, October, 2010

Three weeks.
Twenty one days.
Five hundred and four hours.
Thirty thousand, two hundred and forty minutes.

This is how long it’s been since my total cervical spinal surgery in Lanham, Maryland.

Three weeks.
Twenty one days.
Five hundred and four hours.
Thirty thousand, two hundred and forty minutes.

This is how long until my baby girl’s brain and spinal surgery in Baltimore, Maryland.

I’m in bed today. I woke to a cold November rain. (Cue Guns N’ Roses.) I got my hubs and girls off to work and school. I did my ridiculous “fly lady” stuff just in case Southern Living stops by for a photo shoot. I put a roast and potatoes and carrots in the crock pot. I washed my face, brushed my teeth, freshened my deodorant and changed my underwear before putting my pajamas back on. I switched out the dressing on my neck wound, changed the gross pads on my neck brace and adjusted the velcro for a sturdy fit. I swallowed two muscle relaxers and a pain pill and crawled back into my made bed with a heating pad on my still very aching hip where they aspirated bone fusion material. Then I cried.

I don’t do this.
I don’t crawl back in bed.

I haven’t been treating my pain since last Wednesday.
Two weeks is my personal limit for narcotics following surgery.
The next stage is what I call “big girl pants.”

I still think my life is worth a little bit more sitting up in a chair instead of lying down. I’ve been PUSHING…working for hours each day on the details of planning a big surgery at a huge hospital far away. The paperwork is overwhelming. Danica is a new patient. Every single detail of her medical history has to be documented. I need to have specific conversations with the dozen people who will have direct contact with us during her care. I have to manage FMLA paperwork for Dan’s work. He will have to take unpaid time off for this trip and most likely to help care for Danica after and drive us to post op visits. I have to make hotel reservations and figure out navigating the city and parking. I have to talk to insurance and the hospital and understand the cost of this out of network care at one of the best hospitals in the world. What do we pay up front? What needs pre-authorized? What is our responsibility after the large deductible is met? How does Danica’s individual out of network and my individual out of network combine to form the family out of network. What is and isn’t included in patient maximum out of pocket. Is that even a real thing in our situation? This is mind numbing and soul sapping work. After all our hard and all God’s faithfulness I still ask, “How in the world will we do this?” I repeat my mantra over and over. “Thank you God for access to care. Thank you God for access to care. Thank you God for access to care.”

Lists. What needs bought. What needs packed. What meds do I need? What does Delaney need? What school work needs done? Who needs informed at school for Danica and Delaney? There’s a form for that. Don’t forget to stop the mail. There’s a form for that. Should we put up our Christmas tree since it could be mid December when we get home? Should we skip it all together? Danica needs her cast off. I can’t drive. Find a ride. Danica needs her pre-op history and physical and labs. There’s a form for that. Find a ride. I need my stitches removed and post-op wound check. Find a ride. Danica needs her hair cut and the back of her head shaved. Find a ride. I have chemotherapy all day next Tuesday. Yes. Chemo. Find a ride.

PUSH.

I haven’t written any thank you notes for the love surrounding my surgery. Okay, maybe one or two, but the rest sit here beside me today. They are addressed and stamped. I feel shame. Gratitude is my life blood. Without thanks how will you know how your kindness changed everything? I won’t go to bed tonight until I write just a few.

PUSH.

Three weeks.
Twenty one days.
Five hundred and four hours.
Thirty thousand, two hundred and forty minutes.

I will STOP.
Time will stand still.

I will send my heart…my Danica Jean…my heart…the little piece of me carved off into her…my heart…into a cold operating room with the best hands I could find and let them open her skull and her brain and her back and try to work another miracle.

Time will stand still.

I’ve been thinking of a conversation between beloved Tolkien characters.

“Frodo: I can’t do this, Sam.

Sam: I know. It’s all wrong. By rights we shouldn’t even be here. But we are. It’s like in the great stories, Mr. Frodo. The ones that really mattered. Full of darkness and danger, they were. And sometimes you didn’t want to know the end. Because how could the end be happy? How could the world go back to the way it was when so much bad had happened? But in the end, it’s only a passing thing, this shadow. Even darkness must pass. A new day will come. And when the sun shines it will shine out the clearer. Those were the stories that stayed with you. That meant something, even if you were too small to understand why. But I think, Mr. Frodo, I do understand. I know now. Folk in those stories had lots of chances of turning back, only they didn’t. They kept going. Because they were holding on to something.

Frodo: What are we holding onto, Sam?

Sam: That there’s some good in this world, Mr. Frodo.”

I can’t turn back.
I must PUSH.
I must keep going.
I must hold on.

Friends, please pray us through this.
Keep loving us through this.
There is good now.
I have to believe there is good in the end.
I know for sure there is His glory.

I have a friend who will be taking over as a kind of “care coordinator” for us when we are gone and when we return. We are working on some practical ways for you to help like Amazon wish lists so we don’t get duplicates of the few things the girls are wishing for Christmas (thank you to everyone already thinking of them in this regard) and more importantly an over abundance of beautiful gifts that become meaningless when what we really need is help paying our basic bills or traveling back to Baltimore for more care. She will be a single resource for you to help get meals to us and have you pick up paper towels and toilet paper while you’re at Target when we are out. I do not know if and when I can drive again so all this stuff that needs done is compounded by my inability to run even a single errand on my own. The biggest need and continued way to help is to donate financially. I’m learning how to use Prime Pantry and even Giant Eagle’s service of grocery shopping and having it ready for Dan to pick up. I find some comfort and control in being able to do these things. I promise I will dedicate a post to specifics including her contact information in the next week. Most of all please continue to pray. Please share and ask others to pray. I know the covering of intercession was the single most encouraging part of Danica’s last huge surgery and recovery. Ask God for us. He knows our needs and oh how He loves us. Our Hope remains. It does. It has to.

This Need To Breathe song is a favorite on our family play list.

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

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Dance2

I love to slip out of bed when my husband and girls are still sleeping. Tucked under warm covers with their precious heads cradled in soft pillows, I watch their bodies rise and fall with sweet gift of breath. I see their faces relaxed in perfect peace. I quietly sneak out to a mostly dark living room and settle in my nest chair with a steaming cup of coffee. My chunky throw is wrapped around my legs, and my dear Twixie pup is snuggled beside me. I watch the night become day as light slowly rises in the east and in perfect quiet I pray.

I pray for my Dan, lover of my heart, my mind and my broken body. He cherishes me like Christ does the church. He is the man who says, “Whatever is happening to you is happening to me.” When I returned home from my Maryland trip last week we sat on our bed looking at the calendar trying to make sense of the days to come purely from a logistics stand point. At first it seemed it was truly impossible for him to come to Maryland this week with me. He wept. He said, “You know you’ve reached rock bottom and are a failure as a man when you cannot be there when your wife goes into major surgery.” Many times before we’ve made Dan staying here with the girls the priority. He needs to work. The girls need continuity and the comfort of one parent being present with them. Now, more than ever, it is difficult to leave Danica. The situation with her neck is precarious, and she fell and fractured her wrist and elbow last Saturday. There is something about this particular operation, the bigness of it and my own anxiety, that makes Dan want to be there more than usual. We’ve made a plan. Dan will drive me to Maryland Tuesday and be there forty-eight hours to make sure I come out of surgery okay, and then he will rush home to Ohio. Yesterday, I was sitting here in my usual place of morning ritual, and he brought me a #pentopaper card. He knows I’ve been doubting the value of fighting any more. He reminded me of my own vows. “If I do nothing else but love Dan, Delaney and Danica well it will be ENOUGH.” He reminded me of the deepest parts of myself, my love for others and my good God that transcend this brokenness.

Father God, If there was no other evidence of Grace in this life, the abiding love of my husband Dan would have me completely convinced. You see how he is hurting. You know the shame he feels when we once again have to beg others for provision, as if any family, even a wealthy family, could have carried such a heavy financial weight for this long. Encourage his heart by each gift of support. Help him to find joy in the love we continue to receive. Help him to know his wife and children, those who are giving and especially You do not see him as inadequate in this regard. Please give him strength in the days and weeks to come. He is a servant leader in our home. Help him know the groceries and the laundry, the cleaning and the yard work and the care he provides the girls and I are not small things. They are a living sacrifice. Protect his body from illness. Please give him mental and emotional strength to move through the drive to Maryland, the long waiting during my surgery, the seeing me in such a wounded and pain filled state, the hard drive home alone and the many days here working and loving on our girls while I am away. Help him know for sure You love him and have plans for a future and a hope. Amen.

Dave Matthew’s “Steady as We Go” is one of the love songs on our life playlist we slow dance to in hard times. It is exactly the way my Dan loves me.

I’m pushing over the next forty-eight hours to do all the things a momma does before she leaves her family for two weeks compounded by the fact I will be in great pain and recovering when I return. We have exactly six weeks between my Wednesday, October 19th surgery at Doctors Community Hopital in Lanham Maryland and Danica’s Wednesday, November 30th surgery at Johns Hopkins in Baltimore Maryland.

We are grateful for your great love for us. It is God making a way. Many of you have asked how you can specifically help in other ways. There are needs. After my surgery I will form a private facebook page where we can post how and when we need help and you can respond in kind.

Our Hope remains.

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

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Waiting
YOU keep us waiting.
You, the God of all time,
Want us to wait
For the right time in which to discover
Who we are, where we are to go,
Who will be with us, and what we must do.
So thank you … for the waiting time.
–John Bell, quoted in The Westminster Collection of Christian Prayers

Friday marked 37 days since I pulled my car over and talked in detail with the Johns Hopkins neurosurgeon about Danica’s broken hardware and cervical instability. We picked a “tentative” surgery date of October 12th. I broke up with Cincinnati Children’s. And then it was quiet. We know all too well how difficult it is to get the OR for such a long period of time with all the right people scheduled, especially two head neurosurgeons who have different clinic and surgery days. Because the doctor is brand new to Hopkins he had to order special equipment, something in particular for Danica’s difficult operation, as well as the instrumentation for her new fusion. I guess it makes sense you don’t take a position at one of the best hospitals in the world and then waltz in and use whatever stuff they have. I keep saying something breezy like, “God’s got it on His calendar!” But we’ve been getting antsy, and I’m wanting to orchestrate the hundred things that can only be planned after we have a firm date. You can imagine my “beautiful mind” notebook, right?

My dear friend Kris Camealy has written a new Advent devotional titled Come Lord Jesus: The Weight of Waiting. I began reading an advanced copy the same week we made the decision about the surgeon and hospital for Danica’s surgery. Oh how I needed the disciplined walk through holy anticipation of God’s good plan of salvation through the birth of Jesus Christ. Every day of the Advent journey is deeply rooted in Scripture. I’ve gone back to read the passages again and again. I began to realize. God is not asking me to do nothing in the wait. He is asking me to prepare my heart and mind. He is asking me to humble myself and sit in hopeful and trusting expectation. He is asking me to believe He will work His purpose perfectly in the fullness of time…His time and not mine. If a day is like a thousand years and a thousand years is like a day then a month can definitely feel like two thousand years! He is asking me to believe He is there in the silence. (I will be posting about Come Lord Jesus again when it officially releases on October 16th and doing a giveaway!)

During another difficult waiting season in my life my friend Violet send me these words written by Oswald Chambers:

“God’s silences are His answers…Can God trust you…or are you still asking for a visible answer?…His silence is the sign that He is bringing you into a marvelous understanding of Himself…You will find that God has trusted you in the most intimate way possible, with an absolute silence, not of despair, but of pleasure…If God has given you a silence, praise Him, He is bringing you into the great run of His purposes.”

I already see the beautiful things He’s providing in this quiet time of waiting. With no firm surgery date I have been able to just be with Dan and my girls. I was able to celebrate Delaney’s fourteenth birthday doing “normal” mom things like taking her and her friends to try on formal dresses and out to eat. The first month of her freshman year of high school I was not just physically here but fully present. It has made all the difference. Just the simple stability of picking Delaney and Danica up from school every day has created calm in all of us. I was able to schedule new family pictures and actually follow through. I’ve mostly stayed off my computer and phone and snuggled, read books and had long talks with my Dani J. We celebrated Danica’s ninth birthday with her friends this weekend and will have cake and presents as a family tonight. There are barely traces of frantic Monica, because there was nothing I could do but WAIT and live real life in the quiet instead of holding my breath. This is Grace.

I canceled my Friday, October 7th scan and appointment in Charlottesville, Virginia with the vascular neurosurgeon who placed my VP shunt in April. The logistics of flying there are much more expensive and trying to navigate the several hours from there to DC without being able to rent a car and drive myself are just too difficult. My shunt is working beautifully, and I have continued to have complete relief from pressure headaches and symptoms. It rained buckets last week. I’ve been overwhelmed realizing what a true gift my surgery was. I never could have continued to fight for this relief without all of you praying and encouraging and donating. You didn’t give up. Thank you. We suffer gratitude. I will keep on thanking you because there is nothing else I know to do.

I am keeping a long standing appointment in Maryland with my neurosurgeon on Monday, October 10th. I am suffering increasing neck pain and symptoms. There is definitely spinal cord compression. If Danica’s surgery had remained on the 12th I would have needed to cancel my own scan and consult. I’ve wondered if I could even make it through being Danica’s advocate and caregiver during surgery, hospitalization and long recovery in the pain I’m in. Much like my emergency hysterectomy before her last big surgery I see God making a way for me to put on my own oxygen mask first. The plan is for me fly to DC this coming Sunday, the 9th. I will have my upright flexion and extension MRI and see my neurosurgeon on Monday and fly home that evening. I’m secretly praying if I need a one or two level fusion he would keep me and just do it even though I have no idea how my family would function here if that happened or how we would financially do it. I would be a much better mom to Danica in post op mode with more stability and less pain. Will you please pray specifically for this trip? I also have all day chemotherapy tomorrow. The new treatment plan is for me to have a full bag of Rituxin every six weeks indefinitely. Over the past week or so I have begun getting the blisters back on my hands and feet and my eye and legs have been twitching. These are always the first signs infection is ramping back up. Will you please pray this chemo will suppress the fires and be a long term answer, so I can completely avoid plasmapheresis? It is always healing, never being healed.

Before Danica’s big surgery six years ago Dan and I both read Tony Woodlief’s book Somewhere More Holy. (I can’t recommend this book enough.) I pulled it off the shelf to read again, and these words settled in my aching places:

“We have forgotten the God of small things, which is mostly what He has been with us because we ourselves are small, fragile things. We wait impatiently, sometimes hopelessly, for the burning-bush God, or the booming thunderclap God, forgetting that even a righteous man like Job covered before the whirlwind of God’s voice, that holy Moses could bear only a glimpse of God’s backside. We assume that we would hold up well against a visitation by the whirlwind God, and in our narcissistic longing we forget the God of the still, small voice, the suffering-servant God, the God who said of children that His kingdom consists of such as these. ‘Part of the inner world of everyone,’ writes Frederick Buechner, ‘is this sense of emptiness, unease, incompleteness, and I believe that this in itself is a word from God, that this is the sound that God’s voice makes in a world that has explained Him away. In such a world, I suspect that God maybe speaks to us most clearly through His silence, His absence, so that we know Him best through our missing Him.’”

I did finally get THE call from the Hopkins neurosurgeon late Friday afternoon. I met a friend for coffee yesterday, and I broke down for the first time. I realized I’ve been holding everything really close in the silence and the waiting. As sure as it was time to be quiet and still, I now need safe places to lament the hard that’s coming.

When I make the call to Baltimore today to officially reschedule everything will change. My body will leave my skin. My brain will leave my head. My heart will leave my chest. I will stop eating and sleeping well. Everything will become fast forward. Nothing will change about my God.

This morning my family left for school and work, and I sat remembering one of my favorite passages about waiting: “‘The Lord is my portion,’ says my soul, ‘Therefore I have hope in Him.’ The Lord is good to those who wait for Him, to the person who seeks Him. It is good that he waits silently for the salvation of the Lord.”–Lamentations 3:24-26 I prayed for strength to do each next thing and for complete surrender and dependence on my good God.

His Hope will not disappoint.
Our Hope remains.

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

You’ll notice a few changes here on my site. I’ve added a specific place for Team Danica posts. If you subscribe at the top you will receive updates in your email. So many of you are asking about next steps and what we need. I don’t have specific answers for you. I plan to mail prayer cards to those of you who’ve faithfully prayed and supported us once we have the true surgery date.

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Surgery Scheduled. Steady My Heart. A Team Danica Update

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Trust
“Then you’ll take delight in the Almighty; and will turn your face toward God. You’ll entreat Him and He’ll listen to you as you fulfill your vows. When you make a decision on something, it will be established for you, and light will brighten your way.”–Job 22:26-28

How many times have we fallen into a hotel bed in Cincinnati, Ohio? I should have been keeping a tally along the way. Our first trip was April, 2010. Danica was two and a half years old. We saw the crazy 3DCT confirming her atlas assimilation and how badly her first Chiari decompression failed her. The five months between the tragic news and her second decompression and difficult fusion were filled with second, third and fourth opinions. The surgeons threw their hat in the ring only to second guess themselves and the risk vs. benefit for our little girl and their own surgical careers. There was so little information about a case like hers. We were praying like crazy but moving forward in fits and starts. Many of you read our story as I pecked it out on our little Team Danica blogger site. You were witness to the wrestling of faith and fear. You saw the strain in our marriage and family. You saw me breaking physically and mentally as I fought for the best chance at the best life for my girl.

I’ve been reading for an online Bible study I’m doing from Suzanne Eller’s book Come With Me: Discovering the Beauty of Where He Leads. I’m seeing myself in the humanity of the disciples as we dig deeper. These men saw crazy impossible miracles and days later questioned the economics of a few loaves and fishes and thousands of people. God gave us a miracle. As time passed I thought God was punctuating Danica’s suffering so we could move on to my own bitter fight. The disciples were always forgetting, weren’t they? I don’t want to forget our first miracle. Suzie writes about her husband’s cancer diagnosis years after her own fight with breast cancer. “We beat the odds, and that was a gift. For a long time I thought that was the big miracle, but later I realized the true miracles came as we dug deep into our faith and came up with enough to make it through the day–or the hour if that was what was required.” Whether it’s been six days or six years you’d think I would forever remember the kind of healing and scandalous provision God made for us, but sometimes I don’t. There were moments leading up to our Cincinnati trip I was too blinded by what was unfolding again to turn back and SEE. My heart is fused forward, like my literal neck. Forward. Do the next thing. Do the next thing you think you cannot do. In the past few weeks I’ve been reaching through our story to remember. It aches in the deepest place. You’ve been asking. You’ve been praying. If I write it. If I say it. It’s more true. So I haven’t.

“God, I don’t think we can do this.”

Danica needs another complicated surgery. Her beautiful hardware is broken along with at least one level of fusion. She also has a piece of shunt tubing left near her brain stem. It’s dangerous and needs removed. I could write a neurosurgical and cervical spine treatise here, but it would confuse most of you. We went to Cincinnati with trepidation. After our scans and appointments in late July her case was escalated to new surgeons. We had no idea what our meeting there would look like. I approached it as an information gathering session. The surgeons were humble and kind. They patiently let me ask every detailed question. Dan and Danica mostly listened but felt comfortable in raising their own less clinical concerns. We walked away with an ambiguous scope of surgery and some warning flags. We returned home dealing with Danica’s escalating anxiety about the hows and whens of surgery. “Mom, I just want to know what’s going to happen and MOVE ON.”

While waiting for an important opinion from a surgeon at Johns Hopkins we prayed for guidance. I begged God to make the crooked path straight and help us know for sure where we needed to be. He answered. Last week I got the second call from the Johns Hopkins surgeon after he reviewed every single bit of Danica’s history, prior op notes and her imaging. All the concerns were addressed before I could even raise them. A light shone bright. There are still many details to work out, but her tentative surgery date is Wednesday, October 12th, in Baltimore. She needs an invasive myelogram to see exactly how to approach the drain tubing in such a precarious place. We will have several days of pre-op there before surgery. She will be hospitalized a week or so after surgery. Depending on how she is healing we may need to stay in the area for awhile after discharge. And she will have to wear a brace. There’s no posturing. This is a hard surgery. The brain part. The hardware removal. The new fusion including taking some of Danica’s own rib to make fusion slurry for her neck. This is harder than the prior one, but it must be done and soon and in a new city and at a new hospital.

I’ve been pushing myself to get the girls settled into their new school year. I’ve been trying to spend heart to heart time with my Laney. I finished my last big round of chemo last Tuesday. I will have a Rituxin treatment every six weeks moving forward. My C4-5 is cachunking every time I move my neck. My appointments planned with Dr. Liu at UVA for shunt post op and my scans and appointment in Chevy Chase with Dr. Henderson are the Friday and Monday before Danica’s planned surgery. I know in my heart I won’t be able to make them, but I refuse to cancel them. I need them. I can’t figure out the logistics, but I hate to be so close and not follow through. I’ve been on the phone for hours every day with hospitals, billing departments and our insurance company. It’s soul sapping work. The Virginia hospital where I had my VP shunt placed in April sent my account to judicial affairs. They are suing us. In all our crushing medical debt this is only the second time a hospital has gone to this measure to get a judgment to pursue a levy of Dan’s wages. I’m trying to understand the amount. My insurance company is helping. If I agree to make any payments then I’m accepting the amount which we think is wrong. I’ve focused on paying Danica’s bills this year to prepare for possible surgery at the hospital in Cincinnati. (The money you’ve donated has made the way for us to take those trips and pay most of those bills. Thank you. Thank you. Can you feel our hearts? Thank you.) I try to keep the stress from Dan while quietly informing him. He is working so hard. We can only do what we can do. He can’t become paralyzed by the weight. I try to carry it. I’ve hit a wall. My left eye is twitching. My jaw hurts from clenching and grinding. I ache all over. I’m out of cortisol. The adrenaline is spent.

“God, I don’t think I can do this.”

I’ve felt the needle in my spinal cord. The cut in my back to take a rib. The slicing of the back of my head and neck for a third time. The spasms from damaged nerves and cut muscles. It hurts like hell. To look in my Danica’s eyes knowing that agony is suffering multiplied.

A week ago Danica and I were driving to Paper Allure, a sweet #pentopaper shop I love, to pick up a birthday gift for a friend when the call from the Hopkin’s surgeon came. I pulled over in a parking lot, put him on speaker and jotted notes. Danica heard the entire thing including new, more scary parts of her surgery. She was quiet the few blocks from where we stopped to our destination. At the store she saw a display of bracelets hung by clothespins with one word on them. They are made of swarovski crystals and were a little pricey. She asked if she could have one. I reminded her that she had a birthday soon and maybe it would be special to get one to wear for her surgery. The young lady helping me overheard us. She went in the back room to wrap my gift, and the owner of the shop told her she could let Danica pick one. Kindness changes everything. Danica’s eyes lit up and out of all the possible words like hope and courage and believe she picked trust. The bracelet is from a beautiful project called Little Words. It has a little gold tag with a number you register online with your own story. You wear the bracelet as long as you need the word. When you meet someone who needs the word more than you it’s time to pass it on. They log on and continue the narrative of the life of the bracelet and the one word. In the car on the way home I asked her why she picked the word she did. With the simple faith of a child she said, “Because I TRUST God.” She’s asked for me to read her old entries on Team Danica. She wants me to tell her about the Gauntlet. She still believes in the gift. Oh, God, I can’t see it, but she can. As I tucked her in bed that night she asked to see ALL my scars. She said “If you can go through that many surgeries and be okay, I’ll be okay.” This weekend we worked on making a folder of photos and short video clips from her journey. I’m wanting to make a multimedia slideshow with a new fight song. I played a few I was considering on YouTube for her. She ran to her room and grabbed the first edition ipad with the shattered screen, the one someone bought her six years ago while she was in her wheelchair, and said, “This is the song we should use.” It was Kari Jobe’s “Steady My Heart.” It’s a song on her own playlist she listens to over and over again. I cried as we listened to the meaningful lyrics.

She believes.

He’s here.
He’s real.
We can trust Him.
Even when it hurts. Even when it’s hard. Even when it all just falls apart.
We can run to Him.
He is lover of our hearts.
He is healer of our scars.
We find refuge in His arms.

My Danica Jean is taking the lead. She’s grabbed my hand. She’s reminding me to lean hard. She’s showing me how to trust again.

“God, we can do this.
Through Your strength.
By Your Grace.
We can do this.
Please, steady our hearts.”

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Holding It All Together. A Team Danica Update

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Gauntletphoto

My Danica girl woke this morning and shuffled her way to my lap. She knows she will always find me sitting in my corner chair wrapped in a cozy throw with a cup of coffee in my hands. I put my steaming comfort aside, and make room for her. Her lanky legs stretch almost as long as mine now. She’s so tall it’s hard to kiss her head, especially with my fused neck, but I always try. Our fingers entwine, and I squeeze her hand as if to say, “Good morning, my dear. No matter what today brings I am here for you. I love you. Jesus loves you more.” Some of my favorite talks happen as she shakes off her sleep and begins to think out loud. Today her words took me off guard, “Mom, If God is in control of everything why did He even let sin and sickness happen?” I stumbled as I backtracked to Eden. Things were perfect, but there was this one tree. All God asked was for them to remember He was God and they were not. I see her reaching to make it more personal. Life is pushing her outside her mother’s faith and asking her to claim her own. Her next question knocked the breath from my lungs. “Mom, why did He take my miracle away?”

“It feels like an ocean of sorrow is under my skin…”

I haven’t been able to find words to tell about our trip to Cincinnati on July 26th. We left with incomplete information that has been filtering in since. Today we have more questions than answers. Danica’s rare and messy case has been escalated to new surgeons. We have been asked to return to Cincinnati quickly, on Thursday, August 18th, to discuss a joint effort with neurosurgery and orthopedic surgery.

“Even the ocean eventually meets with the sand…”

Since our March trip, when the scans showed the shocking views of broken hardware and broken fusion from Danica’s skull base to C1, we knew this was coming, but we thought we had months to watch.

“Sorrow on sorrow I’m waiting. Heavy I’m anticipating…”

My mama gut, made much more wise from years of reading X-Rays, CTs, MRIs and radiology reports in addition to dozens of neurosurgical and fusion surgeries of my own, told me the hardware was not the most concerning problem. Yes, it’s broken. It’s broken unevenly and moving on flexion and extension, but Danica’s own words told me instability was the greater issue. “Sometimes when I wake up my neck is stuck, and I have to reach up my hands and put in back in place. I hear a click.”

“Trusting the current will carry me.”

I finished my plasmapheresis before our trip and began my first of four chemo treatments on Tuesday. I’m worn so thin I’d swear you could see right through me. My dear friend came to sit with me at the cancer center. I told her how I was feeling. I cried. It’s as if those closest to me…closest to Dan, Delaney and Danica, don’t seem to understand this could be the thing that breaks us. It’s been almost a full decade of hard that can never be quantified. Dan is numb. Delaney is sad. Danica is scared. I’m completely and utterly broken. She told me I don’t wear it that way. I put on a clean shirt and some makeup. I smile and deflect the conversation to you. I say words about God as if the speaking makes them true.

“You are my strength. You are my song. You are my salvation. You hold it all together. You hold it all together.”

He is God. We are not.

“We come with great expectations and fears in our hearts.”

I didn’t know how to answer Danica this morning, so I reached for my Bible and turned to her life passage. My life passage. I read Psalm 139 aloud.

You have searched me, Lord,
and you know me.
You know when I sit and when I rise;
you perceive my thoughts from afar.
You discern my going out and my lying down;
you are familiar with all my ways.
Before a word is on my tongue
you, Lord, know it completely.
You hem me in behind and before,
and you lay your hand upon me.
Such knowledge is too wonderful for me,
too lofty for me to attain.
Where can I go from your Spirit?
Where can I flee from your presence?
If I go up to the heavens, you are there;
if I make my bed in the depths, you are there.
If I rise on the wings of the dawn,
if I settle on the far side of the sea,
even there your hand will guide me,
your right hand will hold me fast.
If I say, “Surely the darkness will hide me
and the light become night around me,”
even the darkness will not be dark to you;
the night will shine like the day,
for darkness is as light to you.

“Send us Your light as we’re making our way through the dark.”

For you created my inmost being;
you knit me together in my mother’s womb.
I praise you because I am fearfully and wonderfully made;
your works are wonderful,
I know that full well.
My frame was not hidden from you
when I was made in the secret place,
when I was woven together in the depths of the earth.
Your eyes saw my unformed body;
all the days ordained for me were written in your book
before one of them came to be.
How precious to me are your thoughts, God!
How vast is the sum of them!
Were I to count them,
they would outnumber the grains of sand—
when I awake, I am still with you.

“All of the earlier troubles, chaos and pain they unravel”

He is God. We are not.

This afternoon we snuggled in the big bed and watched the movie Miracles From Heaven. There were so many similarities to our story. The mama bear fighting. The faithful daddy staying behind doing what needs to be done. The older sister who gets a little lost in the shuffle and sacrifices more than most know. The crushing cost of travel for care and out of network doctors. The lonely divide the physical distance creates between a community of support and hospital halls walked alone. The hurtful words from well meaning people about why this is happening or how just a little more faith might change the outcome. Once again my girl’s little hand found mine. She squeezed it at certain parts. Parts I knew she understood fully because she’s been there. She jerked it away to wipe the tears running down her cheeks. I asked her several times, “Is this too hard for you? Do you want me to turn it off?” She wanted to see it through. We hugged as the credits rolled. I didn’t need to tell her I was skeptical about visiting heaven and living to tell about it. I didn’t need to explain to her how against all odds God can decide to heal someone completely. She felt the power of the narrative, because she knows it to be true.

He is God. We are not.

Danica is sleeping next to me now as I peck away in the dark. She asked for the heating pad for her legs and the cold pack for her neck. Dan is gone working overtime all day and night. Delaney is at a bonfire with her girlfriends. I wandered back to the old Team Danica blog and read the posts from August, 2010. It’s unsettling how easily they could have been written this month, six years later. There is one glaring difference. We know for sure…

He is God. We are not.

We’ve seen His faithfulness in the land of the living. We’ve seen Him provide. We’ve seen Him make a way when there was no way. We’ve seen Him bind up our wounds and heal our broken hearts. We’ve seen Him preserve our marriage and our family. We’ve seen Him rescue us from the root of bitterness. We’ve seen Him shine through the darkest night. We’ve seen Him perform a real in the flesh miracle.

“Looking ahead we rejoice in You.”

He gives and He takes away. Blessed be the name of the Lord.

Danica, I believe this, my brave girl. I do. I want to mirror this to you. A thousand things are happening in this one thing.

He is God. We are not.

September 20th, 2009 we found out Danica had a Chiari malformation. Not knowing all that would mean, I wrote this:

Do I believe God makes no mistakes? Do I believe He lovingly formed this child’s skull and brain how we find it today to fulfill His purpose in her life and in ours? Do I believe we lack nothing God’s grace can’t give us including strength for today and the days ahead? My verse for this week has been Mark 9:24 “I do believe; help me overcome my unbelief.”

I’m afraid. I’m so very tired. I know that trusting God with my child is perhaps the hardest thing He will ask me to do. As He grows my faith and asks me to rest in His promises. I will fall. I will have moments of anger and confusion. I will want to quit and walk away.

Oswald Chambers wrote, “Living a life of faith means never knowing where you are being led. But it does mean loving and knowing the One who is leading. It is literally a life of faith, not of understanding and reason — a life of knowing him who calls us to go.” Knowing a God who is unchanging and will do everything He says He will do is the only way I will navigate through the next weeks and months. I believe.

“You are my strength. You are my song. You are my salvation. You hold it all together. You hold it all together.”

Tonight. This song from All Sons and Daughters upcoming album Poets and Saints is on repeat. My heart melody. Part lament. Part praise. Yes.

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An Inch Of Daylight. If I Want To Live

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inchofdaylight
“My heart is troubled, my strength fails me,
And the light of my eyes, even this is not with me.”
–Psalm 37:11

It was a shadowy week.
Not just Ohio cold and grey.
Not just smudged with Lenten ashes grey.
Not just a big inky cloud I can’t explain away grey.
It was so dark I couldn’t see my hand in front of my face.

Every morning I woke early with my family to move through our routine. As soon as they left for work and school I would make the girl’s beds, wipe the kitchen and bathroom counters and sinks, straighten the house for Better Homes and Gardens and then stumble to my own bed. Curled in the fetal position under six heavy blankets I was gripped with a paralyzing fear this would be the time I might not find my way out of the chasm of despair.

If you’ve ever tried to die before you understand there’s nothing worse than failing at it. If you’ve ever endured intake for an attempted suicide you understand the high stakes to get it right the next go round. I don’t believe in levels of hell, but if I did a hospital psych ward would be at the very least level one. This knowledge makes the slipping even more frightening. I can make a way of escape once and for all or I can hold on here. The lie is there is no real help to be found in the middle.

“On a scale from one to ten how likely are you to harm yourself?” The wrong answer to this question lights a fuse you have no power to put out. It’s really better to fudge the numbers. “Have you thought of specific ways to end your life?” Never, ever tell them how you would do it. People who love me and have sensed me slipping away say, “Call me. I mean it. Anytime of the day or night. I’m here.” They remind me I have to let them know when it gets this bad. If I’m faking being okay when I’m not they can’t help. I run through the short list. Lord, people have so many hard things to deal with. I can’t be one of their hard things one more time.

“My soul is exceedingly sorrowful, even to death.
Stay here and watch with Me.”
–Matthew 26:38

Until a few years ago, when I was finally diagnosed with Autoimmune Encephalitis and Adult PANS/PANDAS, I could only explain the sudden onset of the episodes as if a demon was coming over me even though I knew I was ultimately protected from them. I was mostly happy and hopeful even in the midst of intense daily pain and extreme life stress. Out of no where it would rush over me. I wanted to die. My healthcare professionals continued to try to understand and treat me as some variation of Bipolar, the best diagnosis they could squeeze out of the DSM. I now know there are chemicals, bacteria and viruses able to hair trigger me into debilitating physical and neuropsych symptoms. These are things completely out of my control, and my autoimmune disorder sets me up for continuous infections and cycles of sickness. As soon as I begin to feel unwell physically I become disoriented by hissing lies about the worth of my life. I have never really fit the depression diagnosis. I’m just not a sad person. Serious, yes. Sad, no. Every time it happens there is a moment when my mind and heart fade to black. The physiological starting place is compounded by a life of what can only be described as continuous pain that is often excruciating. This means I am already always standing on the ledge.

You want to live a long life. You want a future and a hope here on earth. You are maybe even afraid to die. I want release. I know there are people who need me now. I believe God has a purpose for me or I wouldn’t still be alive, but I want to go. I’m ready to go.

“Then they cried to the Lord in their afflictions,
And He saved them from their distresses;
He sent His word and healed them,
And delivered them from their corruptions.”
–Psalm 106:19-20

This year I am working through the She Reads Truth Lent study. It’s good. The best part is it’s mostly just straight up God’s Word. When your heart is torn wide open and fleshy with need the living and breathing part of Scripture finds an especially perfect soil to take root.

I am crying to Him in my distress.
I’m LISTENING hard.
I’m pointed east.
I’m looking for the light.

Another Lent resource I have used for many years is a small book of daily readings by Emilie Griffin titled Small Surrenders. She suffers from chronic illness and tells of one of my favorite poets, Gerard Manley Hopkins, as an example of a man “plagued by frailty and weakness, not just physical but psychological. At times he would plummet into an abyss of darkness, what he called ‘cliffs of fall.’ The steep dropping-off places of the soul seemed worse than any physical distress. This, therefore, was Hopkin’s prayer, his hope: ‘LET HIM EASTER IN US. BE A DAYSPRING TO THE DIMNESS OF US.’

The sun was shining this morning as I drove to my counselor’s office. I played the JJ Heller song “Daylight” over and over and over again on the way there and the way back.

There is an inch of daylight underneath the door.
It’s enough for me to fill up my canteen.

If I want to live
Your love is what I need.

Be near me.
Be near me now.
Be near me.
Be near me now.

There is an inch of daylight underneath the door.
It’s enough for me to fill up my canteen.

If I want to live
Your love is what I need.

“You do not want a sacrifice or I would give it; You are not pleased with a burnt offering. The sacrifice pleasing to God is a broken spirit. God You will not despise a broken and humbled heart.”–Psalm 31:16-17

Photography by Cindee Snider Re. Used with permission.

JJ Heller’s “Daylight.”

(Thank you for praying for me in the “Shadowlands.” This is the first February in several years I haven’t been able to escape to Arizona. Those trips were times of retreat and healing but also reminders I could be some better. I’m missing the desert. For me it was a little like the Promised Land.)

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Love Is A Mix Tape. You Stay

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46087325a7a799ff1cd67cea1266d2dbfb88fa5

Every morning your alarm goes off at 6 am. I hear you slide out of bed and into the shower. I ease from my pharmaceutical induced sleep into first prayers. Danica pads in from her room and crawls into your still warm place under the pile of covers for snuggles. The sure whistle of the tea kettle ends our snooze. I force my aching joints and fuzzy head upright and shuffle to my nest chair. Within minutes I’m wrapped in blankets and warming my fingers around a favorite hand thrown pottery mug. I always close my eyes for the first sip of the life elixir you French press for me. I taste your care in the special mix of beans brewed with precision and the perfect amount of cream and sugar. We don’t speak. The familiar and comforting aroma and taste greet me gently and say, “Good morning, my love. I cherish you.” After you make breakfast for Danica you join me in the living room for ten minutes of together. You look across the room into my eyes and find the answer to the question of how you will feel for the day.

Last week I woke with a sharp pain around my shunt. You could tell I was wincing, and my breath would catch when the knife came. Tears welled up in your eyes as you told me what it feels like to watch me suffer. You said every time I’m hurting you are too. You said as hard as it is to be me, it is perhaps even harder to be in love with me. It is pain multiplied. You are powerless to make it stop or even a little better. You would take it from me if you could. I know this, but I would never suppose you could survive even a day of the ache I’ve learned to master over a decade. It is mine to bear and yours to watch.

Saturday night we sent our girls away to celebrate fifteen years of promises made. Delaney was disgruntled, and I told her she is old enough to understand just a little how a man wants a woman and a woman a man. I told her she is lucky her parents are still madly in love and wanting time alone. Our plans to dine at our favorite restaurant were cancelled because my brakes began grinding and scraping. We haven’t been there for five years, since our tenth. We swore we would always make these milestones count no matter how poor but with the unknown cost of mechanics we didn’t chance it. Instead we went down the road for a cheese platter and cheap red wine. It was a feast for us. We told our love story back and forth to one another. The waiter brought us a piece of chocolate cake to share. I’m sure he thought it odd neither of us wore wedding rings, yours needing sized smaller and mine with the big gaping hole where the diamond used to be. Broken traditions, symbols sold, no gifts exchanged or surprises planned, just our rare and enduring romance built on a foundation of precious things no money could ever buy.

We came home and danced heart to heart to the melodies of our personal soundtrack until there was no space between your body and mine. God talks about two being one. Most consider this hyperbole at best. Why would you ever give all of yourself to someone else? Why would you sacrifice every bit of power and protection over your own heart to be true to another? Why would you forgive betrayal? Why would you stay? Why would you keep staying when life would be easier almost anywhere else?

You buried your face in my war torn neck and told me I am the most beautiful woman in the world. You traced my many scars with your fingers remembering the hard fought battles they represent but also the Grace, the healing and the Hope. You say you love me for almost everything I am, not in spite of it but because of it. You stay because my heart is your home.

Seventeen years in love. Fifteen years married. And the band plays on.

(Photo by Grace Designs Photography. Used with permission. From our anniversary photo shoot five years ago. I love we are wearing our rings here.)

This is side A and B of a mix tape that tells our love story. There are many more songs, but this is a framework. Enjoy. (I apologize for the clunky YouTube links.)

Be inspired. Splurge on itunes to make a mix tape for your love. Sneak it on their ipod as a surprise or burn a CD for their car. (Am I the only one who still burns CDs?)
What are your favorite love songs?

Hero. Enrique Iglesias. (Our first song. Dan used these lyrics in my 40th birthday toast.)

Bless the Broken Road. Rascal Flatts. (What a terribly broken road we both walked until we found one another. No regrets. If even one thing had changed we might have never met or loved.)

I Don’t Want To Miss A Thing. Aerosmith. (Armageddon was one of the first movies we snuggled up on the couch and watched together. I still cry when I hear this song.)

Your Arms Feel Like Home. 3 Doors Down. (For the first time in years I was safe. Dan was home.)

All That I Am. Rob Thomas. (Dan’s vows to me.)

Making Memories of Us. Keith Urban.

Better Together. Jack Johnson. (Good years. So good.)

Love Remains the Same. Gavin Rossdale. (We were both lost and wandering apart, but at the root we were still oh so in love.)

You Stay With Me. Faith Hill. (I broke promises. Dan forgave. Dan stayed.)

Let It Be Me. Ray Lamontagne. (Dan asked me to marry him again.)

For You. John Denver. (Our five year vow renewal song.)

These Are the Days. Sugarland. (Grabbing sweet moments.)

Steady As We Go. Dave Matthews Band. (Danica was broken, and we didn’t know how to move.)

Dancing In the Minefields. Andrew Peterson. (We needed to love like Jesus to survive.)

I Won’t Give Up. Jason Mraz. (We couldn’t imagine life would get any harder, and then it did.)

Broken Together. Casting Crowns. (By His Grace alone.)

Thinking Out Loud. Ed Sheeran. (Our Tucson Song.)

Better Days. Goo Goo Dolls. (Our continued anthem and hope.)

Dance Me To the End of Love. The Civil Wars. (Fifteen years. Still Dancing.)

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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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