There is a poem titled “The Invitation” by Oriah Mountain Dreamer. (Totally made up name or hippie parents!) I have loved it since college and lean into the last few stanzas over and over again,
” . . .It doesn’t interest me
to know where you live
or how much money you have.
I want to know if you can get up
after the night of grief and despair
weary and bruised to the bone
and do what needs to be done
to feed the children.
It doesn’t interest me
who you know
or how you came to be here.
I want to know if you will stand
in the centre of the fire
with me
and not shrink back.
It doesn’t interest me
where or what or with whom
you have studied.
I want to know
what sustains you
from the inside
when all else falls away. . .”
Everything is packed. Danica is tucked in her own cozy bed for the last time before we step out the door into the unknown. We prayed with our fingers laced together and tears running down my face. “God, bring us back here to this place.” I told her how I take a mental picture of my bed and my room in my sanctuary, and it becomes the thing I fight to get back to when I am in the hospital or hotel after. When I think I’m too far into the pain or the trauma of all these trips and all these surgeries I think of home.
I am weary and bruised to the bone. My recovery has been slow. I know the stress of the fire we are headed into is part of the reason my body has resisted rest and healing. My cervical spine continues to spasm, but the searing pain is below my fusion rod in the thoracic spine. It is learning to hold my body and sustain all the movement I need.
Our entire family has moved back to survival mode. This is something we know. We understand these relationships are built on something stronger than good days. We have loved one another through very hard times before. As we move towards Danica’s surgery on Wednesday morning EVERYTHING ELSE FALLS AWAY. What will sustain us THIS time?
I read these beloved verses from Deuteronomy this morning. “This day I call heaven and earth as witnesses against you that I have set before you life and death, blessings and curses. Now CHOOSE LIFE, so that you and your children may live and that you may love the LORD your God, listen to his voice, and hold fast to him. For the LORD is your life.” My heart was hard and there was a root of bitterness. This powerful message dug it up in one big chunk and then watered my parched soul. We will keep choosing life. He will sustain us.
Your outpouring of love is part of His plan and purpose in our lives. Thank you. Your cards and gifts and continued donations to our family are sometimes the way He reminds us, especially on really bad days, He has not turned away. Your faithfulness mirrors His faithfulness.
We are humbly asking you to be prayer warriors for us. Please pray for travel mercies tomorrow as Dan and Laney drive the turnpike to DC. Danica and I will fly direct from Akron-Canton to Reagan. Our hope is the easy security, no luggage, close gate and one hour flight will save spoons and cause much less pain for Danica and I’s necks. Please pray for our last night together as a family for quite some time in the hotel in Baltimore. Please pray for Dan and I to grow closer not apart. We both have a hard edge about us today. It’s difficult to be so wounded and know we are heading to allow wounding to our daughter and not lash out or pull back. Please pray for Delaney as she visits family, comes to see Danica post-op and returns here while we stay on. She has such a brave face, but we’ve been leaving her and sending her away since she was four years old while I was fighting to give life to Danica. It’s a painful reality, and she’s conditioned her heart to protect it.
I checked my email tonight. I found the promotions tab which was emptied yesterday full of 405 Black Friday sales sent today. What if there is nothing in this whole wide world that matters except your little girl making it to one of the best hospitals and two of the best neurosurgeons in the world and surviving a rare and difficult brain and spinal surgery? What if all you want is to see her through this…out of danger and out of pain…back in her bubblegum pink room with “Sleep Sound in Jesus” playing her to a peaceful and comfortable sleep? This is when ALL ELSE FALLS AWAY.
I’m going to crawl into my bed now. I’ll play my hope playlist and try to sleep a little. I’ll try to pray a little too.
“Father God, Love us as a mother loves her children. Pull us to your breast and give us comfort and rest. Hold our hands and our hearts in this hard and bring us through the gauntlet to give you praise and glory. By Him. For Him. Through Him. Amen.”
“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.
“One comfort that I relish is a letter from a close friend. The surprise of the letter in the day’s mail, the recognition of her handwriting on the envelope, the ritual of getting settled into my chair and reading and rereading her carefully chosen words.”–Deborah Chappell
I painted our ugly black metal mailbox white and used blue paint to stencil a flower and the numbers 309 on it. 309 Hoover Street in Staunton, Virginia was the first place I began to send and receive #pentopaper cards and letters. We left Ohio when I was five years old. My first grade teacher, Mrs Cobb, who would later be Delaney’s third grade teacher and is now Danica’s third grade teacher, became a pen pal when we moved away. I’d sit on the front porch swing waiting. The mail truck would stop at our house, and I would leap barefoot over the sprawling roots of the maple tree to check and see if there was a letter for me. Soon after I began collecting stamps. Every year for Christmas I would ask for the USPS Philatelic book containing every stamp released that year. A life long obsession with cards and stationary took hold as well, and I began collecting all kinds of paper. Most of all I began a love of slow, thoughtful back and forth conversations written by hand.
If you know me personally you have most likely received a #pentopaper from me. It’s been a priority most of my life, but when I became very sick I struggled with losing the ability to minister in any active way. I began setting aside a day a week to look through my address book, my facebook friends and church directory and mail cards and letters to touch base, encourage or celebrate people. I took the opportunity to pray specifically for each person I wrote. In a world where we primarily follow and respond to one another’s lives in seconds on social media or text messages if someone is very close to us, there is something incredibly intimate about receiving a letter touched by someone’s own hands, written in their unique style and penmanship, envelope licked by their tongue and carried to their own mailbox. They push the flag up as if to say, “Stop here! I have a piece of love to send today.” I’m fascinated with the logistics of the postal service. People complain about the price of stamps, but I still marvel for under fifty cents I can write you a letter, mail it from Ohio today, and you will receive it in California Thursday or Friday this week. I like to think of the journey it takes from here to there.
I have also been the recipient of hundreds of #pentopaper acts of kindness over the years. There are days a letter in my mailbox is the only contact I have with the world outside my home. The thoughts and prayers expressed in my own love language have literally rescued me. I don’t take one for granted. I cherish them all, and I hoard them. I don’t save much of anything I haven’t used in the past thirty days. My life is simple and lean, but when I die there will be my books and hat boxes, shoe boxes and Rubbermaid containers stuffed full of personal mail. The postmarks form the framework for my life’s timeline. Friends come and go. A few have stayed forever. Some people I don’t know at all, but they are praying for my family and I and supporting us. These cards and letters tell a story I love to read over and over again.
As part of my year of listening I have pulled back almost completely from responding on social media. I rarely text. When I feel myself wanting to type a few characters to express my sorrow or joy over something you’ve shared or just wanting to tell you I love you, and you are on my mind and heart, I STOP. I sit down next to my rolling cart full of paper, pens, stamps and stickers and my old fashioned address book, and I write something real and lasting and walk it down to my mailbox with a prayer. On every piece of mail I’ve sent I’ve written somewhere on the envelope the hashtag #pentopaper.
As a thank you to everyone who has taken the time to love me this way and as a challenge to those of you who aren’t really wired or disciplined to send #pentopaper much at all I am hosting a fun giveaway.
It includes the sweetest little set of jewelry with a tiny letter necklace and tiny letter earrings. I can hardly stand it they are so precious. There is also a set of “You’ve Got Mail” notecards with twenty USPS stamps and the book The Art of the Handwritten Note: A Guide to Reclaiming Civilized Communication by Margaret Shepherd.
To enter please comment here on the blog or on a social media post about a time you received #pentopaper that made all the difference. I will randomly choose a winner Monday morning, October 3rd. In the meantime think of someone who could use a note of encouragement, thanks or love and find time to write them and stick it in the mail. Don’t forget to use the hashtag #pentopaper. Let’s fill up one another’s mailboxes with kindness.
“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.”
“Inauthenticity, hiding and pretending to be someone we are not, leads to shame. Refusing to be vulnerable for the sake of preserving pride and self-image destroys the possibility of living in Jesus’ freedom and joy and hope.”—Jennifer J. Camp
I hate bandwagons. I can love something like crazy, but if too many people start to love it too I become suspect. The road less traveled, the narrow gate, the eye of a needle…these are the things I want to be part of. I’m a fan of precise words, and I hate the cliché, especially Christian ones. Here are a few I’ve tried to weed out of my vocabulary in the past few years,
Authentic
Transparent
Vulnerable
I used to appreciate them, but then everyone, and I mean EVERYONE, started saying they were suddenly telling the whole truth about everything. And I cringed. They became fingernails on a chalkboard. I would hear them or read them, and I’d get a mini barf in the back of my throat.
I wrote Gauntlet with a Gift out of context…without the memoir that came before. And then the doubts came. Why would you believe all this suffering was a gift of scandalous love and Grace if you didn’t know what I was rescued and redeemed from? I didn’t tell you about the child who found Jesus and then lost Him. I didn’t tell you about the ugly, abusive church that keeps me from going to this day. I didn’t tell you about how being a victim of violence triggered the sudden onset of a prodigal life or how I became a self made orphan, a drunk, a slut and then a prostitute, a thief, a murderer, and an adulteress. All of you reading my old blog day after day and following our hard on social media saw me stumbling in faith but always finding my way back to Dayenu. Even this was enough. It was more than enough. It was more than I deserved. I was daring to call it good as long as He was getting the glory. None of this makes any sense unless you know the before. So I saved Gauntlet away. I took the Scrivener short cut off my desktop, and I claimed “Listen” for this year. I’ve written almost nothing. I’m less true. I’m more covered. I’m more guarded. I fear the cliché. I’m terrified of the overshare.
Part of the listening has become a Spirit led passion to read well and support other writers who are brave truth tellers. Mostly offline. Slowly God has allowed me to form authentic relationship with these transparent and vulnerable Jesus people. I am realizing their stories are layers of sin and suffering saved by Grace and faith just like mine. Sometimes their middles need told before the beginnings. Sometimes they stand alone. There are no hard, fast rules to this messy business. I’m also understanding as much as our narratives have similar chords they are also uniquely ours and, yes, each and every one has the power to help and heal, sometimes others and most of all ourselves.
A beautiful anthology of short authentic, transparent, vulnerable stories from friends I know and friends I’d like to know were born through a midwife, Cara Sexton. The book is Soul Bare. Some of the writers I’ve had the great privilege of meeting face to face. I’ve shared meals and worship and sacrament with them in sacred space. Some of the stories are from writers I’ve never heard of. They don’t have book deals or speaking obligations. They have small online places where they shed pretense and practice real. As blogging fades into podcasts and live video streaming, there are still plenty of us who wish we could stay in 2007 with our one hundred faithful readers (was “following” even a thing then?) and just lay it down day after day in words. If you miss that kind of intimacy, you will love this book.
Cara ends with this beautiful description of “what it means to be soul bare…”
…This is what it means to seek God with all our heart and mind and soul. It does not mean, as anyone who has ever lingered in Christian subculture may suspect, that we have reached a pinnacle of faith–that we have simply believed hard enough.
It is to be lost and found, over and over again. It is to recognize the upside-down nature of the things of this world. It is to know that even when we are lost, we have a finding place. It is to know the word ‘help.’
Even when we have no words, even when we have only blindness and cannot take ourselves to the Word made flesh, He comes anyhow, somehow…He comes, and against all odds, we see.
Cara isn’t one of the writers I knew. Just before this book was published one of the other writers included in the book, a mutual friend, connected us for an entirely different reason than words. Cara has been a chronic illness warrior for years with muddied diagnoses. They just found her Chiari malformation. Oh how I wish I had a printed copy of Gauntlet to mail her. Maybe, just maybe, Danica and I’s story matters just as it is.
I’m celebrating Soul Bare with a giveaway!
Here’s how to enter:
1. Share this post on social media to give your friends a chance to win this amazing book.
2. Please leave a comment here about what being authentic, vulnerable and transparent means to you.
3. Please say a prayer for my new friend Cara.
A winner will be randomly chosen from all the entries on Monday night, August 15th, and announced Tuesday morning from my chemo chair.
“There’s happiness right where we are. God is daring us to stalk it. Sometimes it shows up small. But it’s important that we look, because some days the looking will save us.”—Jennifer Dukes Lee, The Happiness Dare
It’s early morning. I’m sitting at the cancer center receiving three bags of IV medicine that prepare my body for the chemotherapy to follow. Steroids, Phenergan and Benadryl along with a hefty dose of oral Tylenol pave the way for a long infusion of Rituxin. This is the first of four infusions, one a week for the next four weeks. I’ve just come through another grueling round of five plamapheresis treatments. Every time we say I can’t do it again. The access to my main ventricle is more and more dangerous. We had to go in the left side through my jugular and tuck the catheter under my clavicle and cross my heart under the skin to get it placed this time. It was even more painful than usual. The consensus between all my doctors is the Rituxin worked at suppressing the autoimmune attacks for a longer period than ever before. After this aggressive month long push I will continue to receive chemo infusions every six weeks indefinitely. I feel hopeful about the new plan.
Most cancer center infusion rooms are similar. This one has over thirty recliners lined up in rows. There is a fireplace and a large TV. When you come in early, like I do, you get to pick your spot first. Slowly the room begins to fill with patients in various stages of cancer. This particular oncologist is known as a cowboy. He does research trials on drugs in various stages of approval. Most of these patients have been told there is nothing else available in their fight, and they come here. This huge room is scattered with people, young and old, who are committed to fighting and holding on. Many of them say their lives have been prolonged years because of their chemo and care here. Still, it is not a “happy” place.
My friend Jennifer Dukes Lee gave birth to a new book today. She named it The Happiness Dare. I love Jennifer’s writing, both her last book Love Idol and her blog. Still, I have to admit I’m just not in a place to play the glad game. When her book showed up on my doorstep the week before last, I resisted the cheerful blue cover with the yellow candy font. The last thing I wanted to be challenged about was happiness. Really? How could I find happiness in all this never ending hard?
Over the last ten years of unrelenting trial in our family’s life, I’ve wrestled with God’s asking me to “Count it all joy.” Joy is a fruit of the Spirit. I understand the suffering of this short life cannot be compared to the eternal glory waiting. This is my ultimate hope. I’m not sure I’ve ever fully believed happiness is something God wants for me. The Happiness Dare blows this wide open, and it begins with Jesus.
“Jesus’ most famous sermon happened in the region of Galilee on a mount. Envision the crowds gathering to hear what the Nazarene has to say. Find a patch of grass or a comfortable rock on the hillside and listen as Jesus begins to speak.
The first word out of His mouth is not holy. It is not joyful. It is happy.
“Happy are those who…”
The word for happy in the Scriptures is Greek makarios. Some translations use the English word blessed whenever makarious appears in the New Testament, But other translators—keenly away that makarios comes from the word makar (which means happy or blessed)—translate the word to happiness instead.
It’s on that mount Jesus opens a profoundly important door into the happiness we can have in Him.”
Jennifer goes on to address the rub in the Christian tradition between joy and happiness. Mix in holy, and the waters are even muddier.
“Happiness isn’t the opposite of holy. It’s part of what makes you holy.
Happiness isn’t the opposite of joy. It’s a part of Chris-inspired joy, expressed within you.
Happiness isn’t selfish, or stupid, or wrong or ridiculous.
When we seek it, we are more, not less, like Jesus.
Our happiness is hemmed directly into the heart of joy. How many truly joyful people do you know who are pinched-faced Christians? If you have to dig a mile deep to find a person’s smile, is that really joy? Or has the misery disguised itself as deep Christian joy?”
Does joy in Jesus abide and happiness come and go with our circumstances? I’m ever grateful Jennifer began her book with the theology behind her dare to be happy. I had to read chapter two several times before I could move on. I realized along with her I have never bothered to ask God for happiness. Ever.
“Maybe I had never asked because I didn’t think I deserved happiness. Maybe I’d heard too many sermons telling me that I’d be far better off aiming for the more durable virtue of joy. If I prayed for happiness, I feared I might sound like a woman who believed in a prosperity gospel, which promises happiness through prosperity and success. But I didn’t believe that kind of gospel at all. I didn’t want happiness at the expense of holiness. I wanted happiness as a part of being a human created to glorify God and enjoy Him forever.”
I exhaled. I got down on my knees, and I dared to ask God to make me happy. Happy here in this chair with chemo slowly dripping, even knowing how utterly sick I will feel tonight and tomorrow. Happy understanding this road is one of healing but always fighting and never fully healed here on earth. Happy learning an unimaginable new surgery is needed for my Danica. Happy opening the mailbox to find the crushing medical bills I know I can’t pay. Happy watching my Delaney and my Dan experience all this as if it was happening to them. I’m seeking and asking for enduring happiness. Will you take the dare with me?
“Takers of the Happiness Dare learn that God not only cares about our happiness, He encourages us to go after it. The Happiness Dare is a challenge to enter into a holy pursuit of happiness, to boycott cynicism, to wring delight out of our ordinary days, and to hunt for happiness even when it’s hard to see…Dare to believe that our happiness actually matters to God.”
Friends, this book is good. Jennifer takes you through finding happiness in earthly pleasure through the good gifts of God. She encourages you to taste heavenly joy even now in His kingdom on earth. She lovingly takes your heart and hand to explore your unique happiness wiring or happiness personality style. (Not a big surprise mine is The Giver) She ends her book specifically addressing happiness in times of pain, loss and grief and our ultimate desire for eternal happiness in heaven. Without these chapters punctuating her dare I still might have felt this book didn’t apply to me. But it does. It is for you too!
“Let’s do this. Let’s frighten the critics and baffle the cynics.
Be like Jesus.
Take the dare.”
“I have told you this to make you completely happy as I am.”—John 15:11 CEV
Gifts are a crazy loud love language (and now I know a happiness personality) of mine. I’m so excited to invite you to join me in celebrating the launch of Jennifer’s book with a giveaway! The winner will a copy of The Happiness Dare
Here’s how to enter:
1. Share this post on social media to give your friends a chance to win this amazing book.
2. Please leave a comment here about a big or small way you’ve found happiness by really seeking it out.
3. Totally optional but highly recommended is to head over to Jennifer’s place and subscribe to her blog Jennifer Dukes Lee. SIGN UP TO TAKE THE DARE and read her post today with all kinds of fun giveaways. I had the honor of meeting Jennifer at The High Calling retreat in November, 2014 and have been truly blessed by her writing and her friendship.
A winner will be randomly chosen from all the entries on Sunday night, August 7th, and announced Monday morning!
Some mornings she simply cannot
bring herself to pray. Even so, a prayer
will at times break through her clenched lips,
announcing the slow drain at her heart.
She will raise her face from its cage of fingers
and gape at the fog that has lain itself down
over the field behind her house like
a dream of erasure. Even the green trees have
lost color. No air breathes. Not a wing of sound
flies back from the highway behind the hill.
And then some midnight, when faith
has quite emptied itself, a familiar loneliness
makes itself at home under her ribs.
A ghost of God? An inkling? She holds
her breath, listens as a small draught
weathers its way through the eaves,
into her ears. The next moment she hears her child
stir in the room down the hall, calling
her name, as if (s)he names her longing and in
that naming, names a kind of answer.–Luci Shaw, The Angles of Light
I texted a friend last night. “I’m losing my religion.” Yes, full blown, Michael Stipe singing in the background, losing it.
“Oh no, I’ve said too much.”
It was day three of a new round of plamapheresis slowly emptying the flaring infections attacking every part of my body and brain. It is always grueling. I arrive early to have labs drawn. It takes a few hours for the numbers to come back. Twice, last Thursday and today, my treatments have been cancelled because my fibrinogen is too low. The hospital where I receive treatments is in a major shift in their dialysis unit. It’s left them with only two nurses who know how to run the machine I need. My usual nurse leaves tomorrow for a long vacation and the other nurse is off all this week. We were trying to cram five treatments that should be given every other day into less than a week, and my body appropriately screamed “No way!”
As Dan was driving me back to the hospital yesterday I was on the phone with Cincinnati Children’s confirming what scans Danica will be having next Tuesday. Realizing my last pheresis will be Monday, the day before we take this oh so hard trip, I was already unhinged. The head ortho nurse looked back in the spine conference notes and said it indicated a CT angiogram that had not been ordered. Trying to get this scheduled at the last minute is nearly impossible even at the main campus much less at the Liberty location where our other scans and appointment is. She said she would work on it and call me Thursday. Yes, this is how things happen in health care. There is clinic and surgeries and other people’s children in the balance. I learned long ago how to walk the delicate line of being a strong advocate and also a compassionate patient. When my daughter is in the exam room or on the OR table I want others to respect and care for us too.
When Dan picked me up several hours later I was ashen, freezing cold in 80 degree heat, crazy nauseous and tired and never more aware of how hard all this is. Anne Lamott writes in her treasure of a book, Help, Thanks, Wow: The Three Essential Prayers, “If I were going to begin practicing the presence of God for the first time today, it would help to begin admitting the three most terrible truths of our existence: that we are so ruined, and so loved, and in charge of so little.” Yes. This.
I am ruined. My body failing me over and over again in countless ways is the ultimate betrayal. It’s never been about believing God can heal me. It’s surrendering to the fact it will not fully happen in this life. There are some victories. The fight is not in vain, but I have to put out a white flag on this complete healing thing. In eternity, yes. Here, no.
I am loved. So loved. My friend who takes me to treatment and comes to get me whenever she can is love. I don’t call her. She calls me. She knows the asking is my Achilles heel. Her calling her son-in-law to help when she can’t is love. Him coming on his precious day off is love. The same friend’s husband buying our favorite Stouffer’s frozen enchiladas while he’s shopping is love. The expression on his face when he sees me and the wisdom in his words, “There’s nothing I can say,” is love. Another friend showing up with an unplanned meal on a day our family was near implosion is love. Tuna casserole can in fact be manna. A package in the mail with epsom salts, unscented lotion and herbal tea and #pentopaper encouragement is love. A friend showing up with food, pet meds and a check from a lemonade stand her sweet girls had to help with Danica’s trip is love. All your donations on our gofundme site are scandalous love. Your prayers, especially when I just cannot pray for myself, are love.
I am in charge of so little. Really, nothing. I can’t orchestrate the rest of this treatment and plan rides to and from even if I asked for help. I can’t predict exactly how our Cincinnati trip will go. Both outcomes of these scans and appointments are worse case scenarios. I can’t tell Danica it’s all going to be okay and soon she will be able to run and play. I can’t ease her very real fears about the future of this broken metal in her neck that once gave her a miracle. I can’t keep my Laney safe while we are away or heal any of the scars leaving her over and over again all these years have left on her heart and mine. I can’t pay our bills. I can’t stop the constant swirling spreadsheet of debt from cutting off my air supply and sending my body into a stress induced panic every time the phone rings or the mail truck pulls away. I can’t go back to work to try to fix all this. I want to work so badly. I want the prideful, self sufficient feeling of doing anything to make this less of a mess, but I can’t. I can’t give my husband the one thing he wants more than anything in the world–his Moni Kaye back. Worst of all, I simply cannot pray.
After my family was in bed last night I slipped into the pitch black sun room, laid on the cold floor and called the friend I texted earlier. She is always my place to tell the whole truth. I cried. I shook my fists. I told her how mad I am. I told her how I really want to give up. In the same breath I had to talk about the love. I couldn’t not mention the love. Something happened. In Anne’s same book she calls it a “divine limpness.” I was saying all the things to my friend I wanted to get on my knees at my prayer bench and say to my God.
“…In that divine limpness you’ll be able to breathe again. Then you’re halfway home. In many cases breath is all you need. Breath is holy spirit. Breath is Life. It’s oxygen. Breath might get you a little rest. You must be so exhausted…
Through prayer, we take ourselves off the hook and put God on the hook, where God belongs. When you’re on the hook, you’re thrashing, helpless, furious, like a smaller kid lifted by the seat of his pants by a mean big kid. Jesus, on the literal hook of the cross, says to God, ‘Help,’ and God enters into every second of the Passion like a labor nurse.
When you get your hooks out of something, it can roll away, down its own hill, away from you. It can breathe again. It got away from you, and your tight sweaty grip, and your stagnant dog breath, the torture of watching you do somersaults and listening to you whine ‘What if?’ and ‘Wait, wait, I have ONE more idea…’
You can go from monkey island, with endless chatter, umbrage, and poop-throwing, to what is happening in front of me. God, what a concept. It means I stop trying to figure it out, because trying to figure it out is exhausting and crazy-making. Doping it has become the problem.
So when we cry out ‘help’, or whisper it into our chests, we enter the paradox of not going limp and not feeling that we can barely walk, and we release ourselves from the absolute craziness of trying to be our own–or other people’s–higher powers.
Help.
We can be freed from a damaging insistence on forward thrust, from a commitment to running wildly down a convenient path that might actually be taking us deeper into the dark forest. Praying ‘help’ means that we ask that something give us the courage to stop us in our tracks, right where we are, and turn our fixation away from the Gordian knot of our problems. We stop the toxic peering and instead turn our eyes to something else; to our feet on the sidewalk; to the middle distance; to the hills, whence our help comes. Something else. Anything else. Maybe this is a shift of only eight degrees, but it can be a miracle.
It may be one of those miracles when your heart sinks, because you think it means you have lost. But in surrender, you have won. And if it were me, after a moment, I would say, ‘Thanks.'”
I hung up the phone, wiped my eyes and blew my nose. I peeked into my girl’s rooms on my way to bed. I remembered my Danica’s prayer, the one I was almost too jaded to hear, “Dear Jesus, Thank you for this day. HELP mommy to get her treatments and to get better. THANK YOU for my friend’s lemonade stand to raise money so I can see my doctors in Cincinnati. THANK YOU for my stuffed peas in a pod. (A gift from her friend she held tightly as she prayed.) Help grandpa and grandma to get home safely. HELP Anna Mae at her new home. THANK YOU for Jesus who died on the cross for our sins. HELP us be more like Him. Amen.” (This is a variation of her same bedtime prayer every night.) Her childlike faith and Sleep Sound in Jesus lullabies tucked her heart and mind safely in when I could not.
I crawled into my own bed, put my earbuds in and listened to R.E.M.’s old song “Losing My Religion.” I was transported back to the summer I saw them in concert at the Gund Arena. I was so far from God but wanting Him and needing Him so badly it ached. I held up my lighter during “Everybody Hurts” as tears ran down my face. Even then I know He heard my “Help.”
This morning Dan and I left our house at 6:30 am so he could drop me at the hospital for labs before he headed to work. A few miles down the highway I felt utterly sick, and we took an exit so I could run into a McDonalds and empty my stomach of the curdled worry and grief I’d ingested the night before. After the needle and the many tubes of blood I waited for hours to get the results. The director of dialysis found me in the sixth floor waiting room. She felt so badly about their staffing issues pushing me to come on days I clearly was not going to be able to proceed. She told me she called the nurse who was on vacation locally. Her daughter had a baby, and she took the week off to help her. She would come in Thursday to get another treatment in. I cried. More love. More thanks. I called my sister, Alecia, who has managed more nonsense in the past week than any one person should have to. I said, “I’m sorry. I need HELP. Can you come get me?” She rallied her girls, got them dressed and drove the twenty minutes to pick me up. I sat in the light filled atrium waiting. I turned my face towards the bright sun, and the Spirit groaned for me what I could not utter and then I said,
“Thank you.”
Amen.
“In the same way, the Spirit helps us in our weakness. We do not know what we ought to pray for, but the Spirit himself intercedes for us through wordless groans.”–Romans 8:26
“If I did not like the way the light looked at a given moment, I knew it would change. If I loved the way the light looked at a given moment, I knew it would change. I could not speed it up, and I could not slow it down…the light was my life…Paying attention to it, I lost my will to control it. Watching it, I became patient. Letting it be, I became well.”–Barbara Taylor Brown, An Altar In The World
I’m sitting at the Raleigh-Durham airport. Our flight should have been in the sky in time to see the sun setting from the windows. Instead we are on a several hour delay. I have traveled alone the majority of my life. I’ve flown many times for work, pleasure and health appointments. I have rarely minded settling in to people watch, read and write and listen to a favorite playlist. When I don’t have to manage other people’s emotions I can handle most anything and even find some kind of enjoyment in it. With Dan and the girls along I become acutely aware of their fatigue, their frustrations associated with boredom and waiting and their hunger and thirst. Tonight I sit with a bottle of Purell and a package of wipes. I’m anxious for them and with them. I take a Valium for my neck in spasm from carrying my bag and sitting so long in a strained position, and I pray. “God, don’t let this long day and night become an ugly ending punctuation on such a beautiful trip. Help us be kind. Help us be patient. Take us home safely. Amen.”
We’ve been in North Carolina on the shores of the Atlantic for a week now. It wasn’t a secret. It was a last minute, quiet gift from dear friends who know more than most what we’ve been through and what we are facing. It was perfect timing. The Tuesday to Tuesday slid between two tropical storm systems. We had beautiful sunny days. Every moment was Grace. Grace by definition is “undeserved merit.” People look at our hard and often say when we get a small break, “No one deserves it more than you guys do.” We don’t operate from this place.
This trip still pinches. The “cheap” flights come with baggage fees. The kennel for Twixie, the airport parking and inevitable eating out despite our many peanut butter and jelly sandwiches strain our “impossible” budget. I tried not to speak in terms of “not enough” to Dan and the girls. I live in the truth of DAYENU. Enough. This entire trip is MORE THAN ENOUGH. This is reality for me. I literally don’t take a single breath for granted. I want my family to understand this as fully as I feel it, but I’m not sure anyone can unless they’ve sat in the painful void as long as I have.
A little gnawing voice has whispered we shouldn’t be here at all. People donated so much money so I could go to UVA and have my latest surgery. I constantly run my fingers over the map of the winding skull incision where prickly new hair tries to grow. I feel the raised bump of my shunt and follow the tubing down the side of my head and behind my ear. I remember. This is why you’ve loved us over and over. This is what you prayed for. You’ve wanted a pain free day in the light for my family and I. God answered with a week of them.
There’s an email in my inbox from Danica’s retired orthopedic surgeon’s assistant. We are trying to schedule Danica’s new appointment in Cincinnati so we are able to see him after her scans and consult with the current head of orthopedic’s at Children’s. It’s never easy coordinating. Dan and I cannot wrap our heads around another trip with long drives on roads that hold so much dread. We can’t think about hotels, bad food, waiting and more waiting and most of all our Danica Jean’s eyes trying to be brave but spilling tears of fear about the unknown. I tried to stay in the HERE and NOW all week but sitting here tonight watching Danica hold her little neck in her hands with the pained look I know all too well I am scared of what comes next.
The light is ever changing. I’m always chasing it. I’ve come to know treasures in darkness. I thought I could write and publish a book about the gifts found in ugly packages. The more I read over my own words the more hollow they seemed. I didn’t delete them, but I hid them away. The same friend who gave us this trip asked me to pull “Gauntlet” back out and read it again. She challenged me to reconsider what I poured from my heart there…maybe not as it is written but at the very core. My vision has matured. What was myopic about Danica’s miracle and my own journey has new layers now. I was trying to write an ending that hasn’t happened yet. I was trying to speed up what could only be seen by slowing down.
I am watching.
I am paying attention.
I’m letting things be.
I’m becoming well.
“And I will give you treasures hidden in the darkness–secret riches. I will do this so you may know that I am the LORD, the God of Israel, the one who calls you by name.”–Isaiah 45:3
“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.)
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.
