Archive of ‘Motherhood’ category

Just Show Up. Part One. A Team Danica-Monica Update

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Galveston angel
“Nurturing friendships is hard enough when everyone is healthy. But when you show up and do the work of being a friend to someone who is suffering, it will cost you something. In other words, you’re going to have to sacrifice your comfort, your schedule and maybe even aspects of your faith.”–Kara Tippetts

We are three days in, and it’s already been a week of hard. Monday I had my stitches removed. If you are a facebook friend I’m sure you cringed at my “over sharing” photo. (Please remember that at least half my “friends” are people who are walking through similar surgeries and recoveries. We celebrate healing no matter how gnarly, and our wounds are truly the places where light filters to our souls.) During the same visit Danica had her pre-op labs drawn and other tests for screening. Her last needle experience in Cincinnati was brutal with several failed IV attempts for a CT with contrast. She was anxious. As much as we talked about how this blood draw was a quick stick with no straw and a much smaller needle she lost her courage when it came time. Both of us showed our needle PTSD. It was ugly. It took the doctor, two nurses and myself to hold her down to try to get a stick, but she jerked, and we missed. She was sobbing. I was sobbing. I left the room for a minute to tell God He got this all wrong. “I CAN’T WATCH HER SUFFER AGAIN.” I was really thinking how impossible this was going to be. We are headed for brain and spinal surgery, and we can’t get through a needle stick. I came back in and moved from the completely understanding and comforting ally to get tougher on her. We had to get through this. We switched to the other arm, held her at four corners, and I began to pray over her. “Jesus, Calm Danica’s heart. Help us stick this vein.” We got it. On our way out our dear doctor hugged us both. She knows how fragile I am from my recent surgery. She’s walked the long road with me for over six years. She knows how impossible all this seems, especially right now. Her hug validated all those things and then said, “You can do this!”

Afterward my dad took us to Chic-fil-A and then to Danica’s special hair appointment where she had the underneath of her head shaved and a purple stripe added for Chiari. It was sad and fun all at the same time. Every step makes November 30th more real. We are all feeling the weight of it.

I had my every six week maintenance chemo drip yesterday. It was painful to sit in the chair for over eight hours with my neck in such spasm. By mid bag I begin to feel oh so sick and the deep bone ache began from the inside out. Last night I was exhausted but could not sleep because of the steroids, the hurt and how sick my tummy gets. I was up and down, up and down…finally I gave up trying to rest. Around 4 am I slipped out to the cold, dark living room and picked up the book “Just Show Up: The Dance of Walking Through Suffering Together” by dear Kara Tippetts and her friend Jill Lynn Buteyn. My friend Kristin had given it to me in January of this year. At the time I skimmed and shelved it. I brought it out to read at chemo but didn’t have the energy. I finally read it cover to cover this morning with a pen and a highlighter. I got out old school college ruled notebook paper and wrote Kristin a long letter stained with some tears.

Kristin and I

Kristin is my friend from Denver who first loved us when she heard God telling her to “Drain it.” (If you’ve never heard this story before you’ve got to read it!) We worked remotely for the same company based in Northern Virginia. I’d only briefly met her twice face to face when I’d traveled to Virginia for work functions and a third time when she came to visit me after one of my surgeries in Maryland before she moved to Colorado. I often say we are the least likely of friends. We are different in many ways. All my life I’d found friends who were almost mirror images of myself. This was someone I could learn from in a whole new way. We became close. She became the person who made me laugh out loud when no one else could. She allowed just enough whining before kicking my butt with the perfect amount of tough love. Even though we live very far from one another she has consistently found ways to “show up” for my family and I. Last October we took a very special girl’s trip to Galveston, TX to celebrate me turing forty. It was the first time we’d spent quality time together in the flesh. We shared hearts. I learned more about her walks with a former fiance’ and her dad who both fought and lost cancer wars. I understood more about how she knew what so many people simply can’t when it comes to loving someone in chronic suffering. When I found out about my emergency surgery she immediately called and said she was coming. She flew to spend a week with me in the hotel after my hospital discharge. It wasn’t easy for her to find care for her children or for her husband to handle all the details while she was gone. He told her “Go be the hands and feet.” (Seriously, this guy lets her obey God and “drain it” and now this. Corey, you are Jesus in skin.)

Kristin hasn’t been feeling well for some time. It’s strange how long and hard we have to look to find what becomes glaring when it’s finally seen. I hugged her in the parking lot of the Dulles Virginia Residence Inn on October 28th as the sun began to rise. She flew home and went to a doctor’s appointment on Monday to explore a lump. Two days later she had a CT that screamed malignant tumor. A week later she had a biopsy that named it. She has cancer. Big cancer. I checked flights to Denver. I wanted to go so badly, if only to ring her doorbell and hug her again. Neck healing be damned. I should have hugged her harder and longer.

This giving and receiving thing still seems so complicated to me. I’m proud. After all this time, I still really want to become independent again. I want to pay all our debt on our own merit. I want to go back to work and save the day. I want to disappear off this screen and be a person who shows up in flesh and blood for others. I want to bring you dinner, or clean your bathroom or fly across the United States to care for you post-op. But I can barely put my own socks on. I can’t drive now and maybe never will again. I’m disabled in all the ways I think the world needs me…in all the ways you, my friends and family, need me. I’m humbled over and over again. I even fight it with my own parents. I fight it with my husband and my children. They see me wincing through a smile. They see me faking it but hear me saying I’m not. I want to find my worth again in their lives too. Everything in this world screams this is by doing. What if you can’t do? What if you can only be?

Like Kara Tippetts I’d like to be known as a “keeper and grower of friendships, a tender nurturer of those around” me even in my suffering. Stripped of all the trappings of what I do for a living, where I live, what I wear or plans for any future I am left with a worn chair in the corner of a living room where I sit and read and write and pray. I pray circles. I mail words. I pray circles. I’d like to believe this is a kind of showing up too…a kind of giving. I’d like to believe BEING in Jesus really is enough. There’s my word again. Dayenu. More than enough.

Kara was dying as she finished writing “Just Show Up.” The way she lived and died impacted the hearts and lives of thousands and thousands of people because she wasn’t afraid of the one thing that remains when everything else falls away. She wasn’t afraid of community. She wasn’t afraid to give and receive. Some of her last written words were these:

“Friends, Community. It is the only way to know and be known. It’s where we see our own humanity and frailty, our gifts and our weaknesses. When we show up for one another, we invade each other in love and become witnesses to the truth that trials and sickness and pain are not the whole story. There’s more. So much more. We can remind one another that our lives are not a mistake. And, most importantly, that we are loved with an everlasting love.”

I’m four weeks out from surgery today. Two weeks away from my baby girl’s huge operation. I am healing slowly. Anything I do jeopardizes what we just tried to accomplish. This surgery can’t be repeated. It HAS to be the last time inside my cervical spine. I HAVE to find a way to ask for and receive specific help. I spent a lot of time in bed on heat after Dan and the girls left for work and school. Chemo recovery day is hard. I still had many phone calls and follow ups to accomplish. And my lists of things to do in the next week and a half before we leave for Baltimore seemed to grow longer not shorter. Around 1 pm I got up to make my family their favorite chicken casserole. It sounds simple, right? I reached down for the large Corning Ware dish. I reached down for the heavy Calphalon pan to boil the water for the stuffing. I bent over to put the chicken in the big pan in the oven. I reached up to get a mixing bowl for the sour cream and soup mixture. I leaned back down to get the chicken out of the oven and then cut it in little pieces. I lifted the large bowl to dump the ingredients and mix them. I lifted the stuffing pan and my wrist slipped out of joint as I scattered the stuffing on top. What if this one meal…this one personal act of love and assertion of independence ruined something? My neck was screaming. Now there were dirty dishes. The dishwasher was full and clean. This is rare. Usually Dan runs it each night and empties it each morning. I have no business reaching in and out of a dishwasher ever. But I did. Doesn’t a sink full of dirty pots and pans and a full dishwasher negate the encouragement I was trying to give by making the meal? So I emptied it.

My girls came home. Danica had homework to make up from Monday. She had a lovely gift bag from a teacher at school. We went through the things. Of course I needed to find a journal to begin a list of gratitude. The mail came. There was a box from my dear friend in Wisconsin with things for Danica. We went through the things. My body was howling, but I kept a cheerful face and spirit for my girl. We added the gifts to the gratitude journal. I took the cardboard to the recycling bin in the garage and sat down to wail.

I need help. We need help. I’ve pushed your offers away, because I wanted to do these weeks cozied here as a family. I did work on a list of specific ways you can help during and after Danica’s surgery, but I kind’ve wanted to keep you out of this part. It’s ugly. I’m ugly. I’m in full on lament. I realized this afternoon I cannot even pack for this kind of trip. I need help.

I got on my knees and with no head bowing ever again I prayed for God to help me ask and receive. I begged Him to help me be honest and detailed about how others can help and trust Him to fill the slots.

The next post will be this ask. Humbly, I will ask you to “just show up.”

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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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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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Letting the Light Be

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“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

Light

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.

Dayenu

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

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Changing Light

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“If you live in the dark a long time and the sun comes out, you do not cross into it whistling. There’s an initial uprush of relief at first, then-for me, anyway- a profound dislocation. My old assumptions about how the world works are buried, yet my new ones aren’t yet operational. There’s been a death of sorts, but without a few days in hell, no resurrection is possible.” ― Mary Karr, Lit
Changing Light

The last time I wrote here I felt like I was dying. I wanted to die. My intracranial pressure ushered me into one of the darkest times of my entire life. The unrelenting pain felt as close to hell as possible without total separation from God. Without the “inch of daylight underneath my door” I might not be here.

I knew my third lumbar shunt had failed. In addition to the mind blowing headache I had a knife like pain where the shunt was placed under my ribs on the right side. My face carried the expression of someone being stabbed over and over again. I don’t remember smiling for months. I don’t remember laughing. When I passed by a mirror I gasped at my reflection. It’s easy to forget who you are or why you are here when it feels like the demons of pain are inhabiting every part of your mind, body and spirit. You just want release.

Our March trip to Cincinnati for critical and overdue scans and appointments for Danica showed shocking images of her broken cervical fusion and hardware. They jolted me into an even more heartbreaking reality. A close friend visited me the week we returned. She knows in an intimate way how I suffer. I texted and asked her to wait a few hours later than planned before arriving. She told me she was prepared to perhaps find me dead when she arrived. She would be the one I wanted to find me. She wouldn’t blame me. My girls would just know their mommy was very sick, and my body couldn’t survive any more. She found me crumpled in my corner chair but very much alive. Couched in her compassion she reminded me I was the only one who could advocate for my sweet girl. I needed to live, and I needed to do whatever I could to be more well for the fight.

Deciding to live meant humbling myself AGAIN and asking for your help. You can’t know how gut wrenching begging is unless you’ve had to do it. I prayed for two things at the beginning of 2016. I wanted no new surgery, and I pleaded with God I wouldn’t need resources from you. He said “No” to both. He orchestrated the details for me to get an appointment with a very skilled vascular neurosurgeon at the University of Virginia right away. YOU gave us the money I needed to travel, pay for upfront medical costs and for the long hotel stay needed for diagnostic procedures and post op. I left my family and headed to the Blue Ridge. It was fitting I would find real help with dogwoods blooming all around. In a surgery not without complications my lumbar shunt and tubing was removed. I have two large incisions on my back and my upper abdomen from the tricky extraction. The surgeon then cut a flap on the top of the right side of my skull and implanted a VP shunt. The tubing begins in a hole drilled in my skull and snakes through smaller cuts behind my ear and down through my chest all the way into my abdomen where it empties excess cerebral spinal fluid that collects around my brain and causes the pressure. This shunt is different in many ways. Most notably it is adjustable. This means as pressure situations or my body’s reaction to them change we can re-calibrate without a new surgery.

I don’t have a headache. I haven’t had a headache since my surgery a month ago.

My pain was an incarceration. Most days I felt like I’d been thrown in the dark and bitter hole of solitary confinement. I’ve been adjusting to the sudden light and the sights, sounds, tastes and even smells of good. I didn’t know if it would happen. My husband and children didn’t know if it would happen. Every surgery and treatment has been like a parole hearing. The results of this VP shunt placement are a “YOU ARE FREE.” I know I’m out “on bond.” My body will fail in new ways and commit old crimes, but today, in the light, staring at the sun, I know for sure God heals. It is a mending that will come in fits and starts until heaven. I surrender to this, but I also believe He wants my resurrection to start HERE and NOW. He’s working out His kingdom come on earth in my heart and life. This is GRACE. Dear departed Kara Tippetts wrote these words in her book The Hardest Peace: Expecting Grace in the Midst of Life’s Hard as she slowly died from cancer.

“Jesus didn’t have to extend His love. He didn’t have to think of me when He went up on that cross. He didn’t have to rewrite my story from one of beauty to one of brokenness and create a whole new brand of beauty. He simply didn’t have to do it, but He did. He bought me. He bought me that day He died, and He showed His power when He overcame death and rose from the grave. He overcame my death in that moment. He overcame my fear of death in that unbelievable, beautiful moment, and the fruit of that death, that resurrection, and that stunning grace is peace. It is the hardest peace, because it is brutal. Horribly brutal and ugly, and we want to look away, but it is the greatest, greatest story that ever was. And it was, and it is.”

I’m remembering He loves me. He’s always loved me. In the hellish confusion I’d lost sight, but He was there. He’s always been there.

Resurrection is mine in Jesus.

Stunning Grace.

Changing light.

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Surrender Every Little Thing. And a super sparkly giveaway

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ELT

“When we search for significance out side of surrender to God, we create our own version of God’s plan for us, and it rarely measures up.”–Deidra Riggs, Every Little Thing, Making a World of Difference Right Where You Are

It’s been more than eight years since God asked me to give up a life I thought was “significant” and become a vessel of brokenness and suffering. Three years into the journey He told me to take my Isaac, our little Danica, and surrender her completely to Him as well. October, the month of Danica’s birth, and three years later, the month of her big brain decompression and fusion, is and will always be full of gratitude and celebration of miracles and provision tempered with remembered grief and pain. My heart breaks and is healed over and over again on these and other personal anniversaries tattooed forever in my calendar brain. After twenty-one surgeries of my own there is not a safe month or even a week anymore.

I’ve seen the ram in the thicket. In every possible and literal way God has been our “Jehovah-Jireh.” He gave us the miracle healing of Danica. He showed up financially at every turn to give access to the specialized care Danica and I both needed. He gave me a clear diagnosis after years of mental and physical anguish. He moved mountains to get doctors near and far to be willing to take the risk to treat me. He’s surrounded us with the kind of love and support I never believed possible, and it hasn’t stopped.

I’ve been told by beautiful, nose wiping, carpooling, snack bringing, essential oil using moms they are in awe of our “story.” They say God has used it in their own hearts and homes to garner more gratitude for their everyday. I’ve mostly prayed God would use this hard He’s written for me however He deems to bring Himself glory, but on the worst days I feel sad and even a little mad when my nothing like I dreamed of life is a springboard for someone else’s comparative thankfulness. I want goldfish in my car seats and play dates and sleepovers at my house. I want to be cheering my daughter on at her volleyball games and to sit in the front row at her orchestra concert. I want to volunteer as a classroom helper and listen to second graders recite their Scripture verses. I want to go on even one field trip with my girl. I want a drop of frankincense diffused to somehow make me more well. I want to be tired from something other than trying to survive. I want to be tired from living. It’s not because I don’t think this struggle could matter. It’s because this isn’t what I wanted at all. None of it. I squirm at any romanticized version of the pain going on over here. It is brutal. It is one crisis to the next, and I know in my heart the supernatural healing God gave my girl is not what He has written for me at all. Until heaven I will be some measure of broken. Every day I wake up wanting something different and “better” for myself and my family. Every day I find my way back to the foot of the cross and remember even this is Grace. Every day I am called to surrender.

Deidra writes,

“Surrender to the work of the Holy Spirit and you will come alive. Exhale, and you will live. When you have spent it all and left it on the track, when you are left in silence and someone else runs all the red lights on your behalf, when you are at the end of yourself and you can barely remember the difference between up and down, choose to breathe. It is our direct reminder of the Holy Spirit at work in this world and on our behalf. It is our immediate reminder that God is always reaching toward us and lifting us to himself to breathe life into our long reach for a life that matters for something.

Breathe.

God will meet you there and receive your one, beautiful, miraculous breath as an act of worship and as a surrender of yourself into his purpose for your life.”

Much of my life is now lived in this Jacobean tapestry chair I like to call my “nest.” I am here in the early morning with numb feet, aching head and joints and too tight heart to sip the coffee my husband brings me, shake off my night time meds and snuggle my littlest. I find a Psalm here. I study here. I pray here. I write pen to paper to my family, my friends and even strangers here. I write for you to read and mostly for no one to read in this place. I am here on the computer and phone tending to a territory of people needing encouragement and prayer and light on their own difficult walks. I am sitting here when people come to visit and sink into the comfort and peace of my yellow sofa with a throw. I listen here. I am here juggling a calendar of appointments and treatment and surgeries. I am here when the bill collectors call and call and call again. I am here when I balance our checkbook and always find there is Dayenu, enough. More than enough. I am here when my girls are dropped off from school on days I cannot drive. My legs always wrapped in a blanket and dozens of books and journals and paper and pens stacked around me like a fortress. Beside me is my little dog, Twixie. She is faithfully here. I cry here. I cry a lot. I find myself back here in the dead of night when everyone else is sleeping soundly. My pain brings me to this place I’ve chosen over bed, as if being upright even on the worst days and nights will make me feel less worthless and more productive. I refuse to waste this. I plead with God to not let me waste this. Make this count. Please God. For You. I struggle here. I resist. I think there is no way this is where God could use me best, so I beat His chest and beg for something different. Anything different. I hold my breath here like a temper tantrum toddler. When I am almost unconscious from the display of lack of trust He gently helps me see my here and now, this time, this place, this body, this life, this chair is exactly where I will find my significance. He causes me to surrender EVERY LITTLE THING, and I inhale Grace and exhale praise, and I believe.

I turned forty years old last Thursday. An unplanned brain shunt revision in Maryland just a week before left my family and I weary and worn again. Surrender. I had to cancel a week long writing retreat on Lake Michigan I was sure He wanted for me and for Gauntlet. Surrender. I humbled myself to receive help once again from others to make my surgery possible. Surrender. Friday night my dear friend Janet and her husband along with my sister threw me the most fabulous birthday party ever. Janet made a toast and mentioned the illustrious “forty before forty” list I’d made and how many of those things I’d longed to accomplish were left unrealized. She then pointed out the almost forty people gathered together in celebration. They were in fact my true and important life work. I gasped at the beauty of this realization. Most of these relationships have been formed and nurtured and grown from this chair.

I am entering a new year of life and a new decade with a heart humbled. I trust you, God. I do. I know there will be moments and hours and days I will struggle, but I surrender EVERY LITTLE THING to you. I will inhale your Grace and exhale praise. I will believe this life in this chair matters in your kingdom and counts. My Hope remains.

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Second only to words gifts are a crazy loud love language of mine. I’m so excited to invite you to join me in celebrating the launch of Deidra’s book with some awesome gifts! The winner will receive a gift set which includes a copy of Every Little Thing: Making a World of Difference Right Where You Are along with an Everlasting Light Shine necklace from DaySpring!

Here’s how to enter:

1. Share this post on social media to give your friends a chance to win this amazing book and super sparkly necklace. Maybe they will turn around and gift it to you!

2. Please leave a comment here about a way God has asked you to surrender your ideas of significance and give in to His greater plan for your life and let me know where you shared.

3. Totally optional but highly recommended is to head over to Deidra’s place and subscribe to her blog Jumping Tandem. I had the honor of meeting her at The High calling retreat last November and have been truly blessed by her writing and her life.

A winner will be randomly chosen from all the entries on Sunday night, November 15th, and announced Monday morning!

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Howard Hughes and Things I’m Missing. Gauntlet Story Feast

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Howard Hughes

This is a repost from December 2011 following my first neurosurgery. I’ve been trying to write something about my recovery from this most recent fusion, my seventh neurosurgery in four years. I am dealing with more disability, or as my counselor says, “different ability,” than ever. I have adaptive equipment to help me put my socks and pants on. I am thirty-nine years old, and the fusion I have now will not heal into a better place. I am stuck. The grief. The loss. The crying. It has been very difficult to write about. As many time as I’ve born my heart to you here, I feel like this is the ugliest thing I could show you. It’s important because it’s true. I know people read this blog for many reasons, but my target audience are people like me. They already know there are two sides to this journey. They know you can Hope in razor sharp suffering because it is our only option if we want to live.

This is a more humorous post about things we deal with in the Gauntlet. I hope you get a giggle. I also hope if you can showered without pain and dressed yourself today you feel a little more gratitude for simple independent things you may take for granted. If you are sitting in traffic or picking up your children from school in the annoying car rider line I hope you say Grace. If you can get groceries or clean your toilets try to be thankful. These things are lost to me, and I’d give almost anything to reclaim them.

Howard Hughes and Things I’m Missing
By Monica Kaye Snyder

I think I’m maybe just a little grumpy today. I figure I’m entitled to have a day or two when the barometric pressure reminds me this surgery is not a total fix for the complex medical issues I have, some of which will be a life long struggle for me, and I still just let myself go to a discouraged place for a little while. I’ve been trying to hard to focus on all the amazing positive gifts God has given and the healing. If I’m totally honest, I’ve even been playing the Pollyanna “glad game” to try and keep my mind/body connection moving in a forward direction.

I woke up this morning to cold rain and my head hurts. Thank goodness, it’s nothing like before, but still really bad, especially where those crazy screws were in the top. I think I’m still miffed I just never realized they were going to screw my head to something. How could I not have known that? My joints hurt. This is my EDS. I cannot be cured of this or even have it “fixed” in some way by a surgery. I will see the geneticist in Cincinnati in February to discuss management and possible treatments to help me deal with this ongoing pain. But realistically it’s just something God has asked me to do. Much of the widespread pain I had before my recent surgery has resolved, especially the neck and shoulder pain which was unbearable and crippling. I was cautiously optimistic because of all the drugs I have been taking. As I have been working on dialing back the medication this week, I still feel so much better overall than I have in years. This is good. Very good.

I think it’s the annoying little things about my recovery and new “disabilities” that I’m finding hardest to cope with and maybe just a little bit of loneliness for my husband and my kids and my space. Yes, I even miss my basement home and “bomb shelter” bedroom over this gorgeous light filled space, because it’s where my people are.

I thought I’d make a little list of things I miss. Maybe it will help ME to appreciate them if and when I ever get them back but maybe just maybe it will make YOU feel more sane and more grateful today and even make you laugh a little which is the best medicine, right?

1. Shaving. This is not a random choice for number one. I have not been able to shave since the morning of my surgery. I am Howard Hughes in sooo many ways and hair removal tops my list of OCD issues. I cannot in any way move my neck and head and body to shave. Last week when Dan was coming for date night I thought I would at least try to shave my armpits. To my horror I realized I cannot look over to the right and left enough to even see them. This is a problem, people. short of beginning a fund for laser hair removal or finding a stranger to come wax me periodically because a friendship would clearly be ended over this kind of interaction, I am in trouble. BIG trouble. I spend a lot of time thinking about how to solve this problem . . . SOON.

2. Tweezing. In the same vein, but also a critical part of my hygiene, I tweeze daily. I tweeze my eyebrows and any random facial hair and my one genetic chin whisker that pops out without warning. Again, I cannot move my face or head or hold a hand mirror or in any real way get this properly accomplished. It is making me crazy! At home I would climb up on our bathroom sink criss cross applesauce and tweeze. My husband and kids know if mom’s in the bathroom for more than a half a minute and if the door is locked this is my “me” time. One of my requests to Dan if I ever become a “vegetable” is please, oh please, have someone come and tweeze me. Last night I even forgot I cannot look down at my own body and see my own boobs. I was worried. Don’t worry, I don’t have “hairy” boobs, but you know how every once in awhile there is a hair that appears and needs to immediately be taken care of. It’s something women in our culture don’t just do. We take it seriously. We don’t speak of it even amongst ourselves, but it has to be done to keep the civilized world running. Well, I’ve outed us. Things are spinning out of control.

3. Caring for my feet and toenails, oh and clothes. I should have gone for a pedicure before surgery. It’s not like I could really even hold my head up or felt well enough to care but now I do. I would ask someone to drive me to get one this second. I would spend money to have someone else fix these rough feet with nails too long and polish grown out except for the above mentioned issue of unshaved legs. I would be too embarrassed to have anyone near my feet and legs to let them do my toes. Add on to this not wearing anything besides sweats and pajamas, ugly flat shoes and a pony tail for months and a self image problem emerges. Yes, I am so much more than clothes and hair and toenails too, but I’m the classic beauty, right? For years I have worn timeless clothes and beautiful scarves and simple jewelry which everyone wondered how I could afford when the truth is I probably bought them at least five years ago when I could afford them, but they are gorgeous still because they are classics. I haven’t bought real clothes in a very long time. I really want to be pretty again, not in the vain sense but in the “her clothing is fine linen and purple” way. Oh, and I bet that virtuous women had trim feet. I’m just saying.

4. Driving. I drove very little for months before my surgery because I had passed out a few times and frankly after seeing the 3DCT of what my neck looked like when I turned to the right or the left I realized I was most likely putting my own life and the lives of others in danger by continuing to drive. Not to mention I could barely get out of bed anyway, and we only have one vehicle. I have been home bound for so long you would think this would be further down the list but I REALLY miss being able to go putz for an hour at Marshalls or go to the grocery store and pick out what I want to eat. I’m so tired of wasting so much time browsing online sites for little Christmas stocking gifts I could just get at Walgreens if I could only go there. I wish I could pick Delaney up from school or take Danica to Chic-fil-A. I’ve had my driver’s license since the day I turned 16, and I have always associated driving with freedom and the ability to escape any situation when I need to but also make something happen when I want to. These things are gone now. I do not know when I will be allowed to drive again or how easily I will be able to with my new “range of motion.” I think about it a lot. If I get special big new “old lady” mirrors don’t laugh.

5. Drinking. drinking alcohol is a Christian liberty issue I’m in no way prepared to address here and certainly don’t want to get private emails or facebook messages about it. If I cause you to stumble dear brother or sister, I am sorry, and we can address that in a different forum. Technically it has been months since I’ve had anything to drink so it’s a non issue right now. That being said, oh how I miss having a glass of red wine. It makes me almost cry. Anyone who knows me well knows I always had at least a split in the fridge because at any moment something might need to be celebrated. Life and champagne are friends that must hold hands often. I really want to “Cheers!” something soon.

6. Cleaning. This is a little sick but then again if you’ve read this far you get the picture. I am desperate to clean something. It really hurts me to want to do this so badly and truly be physically unable. Now that I’ve been living here two weeks I’ve figured out how to swiffer the hard woods for “exercise” to avoid blood clots and yes, may empty my bathroom trashcan EVERY morning, but I want to vacuum and dust and clean my toilet, and I can’t. My own family has been taunting me about how they are living the life over there. Delaney tells me, “Dad let us make a big fort of blankets and pillows and animals and then we just went to bed and LEFT IT THERE.”

7. Tucking my girls in. Listen, all this other “coo coo for cocoa puffs” stuff aside, if you get to be there every night to tell your kids you love them, sing to them, read to them and tuck them in knowing they will be the first thing you’ll see in the morning, thank God. Don’t rush through it no matter how tired you are. In all my years of illness and pain this is the one thing I always pushed myself to do. It is the thing my girls are sure of. It’s the thing I will do long past when they want me to and the thing I’ll cry about every night after they leave for college or whatever else God might take them away from me to do. I snuggle in and talk to them and ask them questions about what made them happy or sad that day and we pray and we pick a sleep playlist, and I stroke their hair or rub their back, and they know, they know without a doubt, they are loved and safe and no matter what it’s going to be alright.

And you thought I wasn’t going to make you cry today!

About Monica Kaye:

Monica Kaye Snyder is a voracious reader. She is a blogger, a writer and maybe even an author. She continues a long journey of chronic illness and daily physical suffering. Some of her diagnoses include Chiari malformation, Ehlers-Danlos Syndrome, Tethered Spinal Cord, Craniocervical Instability, Postural Tachycardia Syndrome, Intracranial Hypertension, Mast Cell Activation Disorder and most recently PANS/PANDAS. She’s seen real miracles happen and holds on to Christ’s Hope as an anchor for her soul while living in great pain. She is wife to Dan and mother to Delaney Jayne and Danica Jean. She knows for sure if she does nothing else well in her life, this will matter and be enough.

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SHARE YOUR STORY. If you are walking a Gauntlet or are close to someone who is and would like to contribute to our Thursday community please email me at mkayesnyder@gmail.com, and I will send you the instructions for submitting. Share with anyone you know who might like to join our Gauntlet Story Feast. (Please use the hash tag #GauntletStoryFeast when sharing so we can find and follow one another.) Our Hope remains.

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Calm Seas. Raging Storms. Father Love

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“For I know that the Lord is great, and that our Lord is above all gods.
Whatever the Lord pleases, he does, in heaven and on earth, in the seas and all the deeps.
He it is who makes the clouds rise at the end of the earth,
Who makes lightnings for the rain and brings forth the wind from his storehouses.”
–Psalm 135:7

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It was the first morning of worship at Laity Lodge during The High Calling retreat last November. Laura Boggess read aloud Mark 4:34-39 in the contemplative style called Lectio Divina. The soft lilt of her voice with a slight West Virginia dialect slowed my breathing and focused my mind on the syllables of a well known story as they rolled off her tongue.

That day when evening came, he said to his disciples, ‘Let us go over to the other side.’ Leaving the crowd behind, they took him along, just as he was, in the boat. There were also other boats with him. A furious squall came up, and the waves broke over the boat, so that it was nearly swamped. Jesus was in the stern, sleeping on a cushion. The disciples woke him and said to him, ‘Teacher, don’t you care if we drown?’ He got up, rebuked the wind and said to the waves, ‘Quiet! Be still!’ Then the wind died down and it was completely calm. He said to his disciples, ‘Why are you so afraid? Do you still have no faith?’ They were terrified and asked each other, ‘Who is this? Even the wind and the waves obey him!’

(I cannot confirm through research or otherwise what version of the Bible Laura read from. I know it was not exactly what is above, a direct quote from the New International Version, but the words below are identical to what I journaled in my bright green Moleskine during contemplation.)

*Leaving the world behind
*Just as He was
*Asleep on a pillow
*Peace
*Be still
*Completely calm
*Why are you so afraid?
*Faith
*Who is this?

It was June, 2009 when we last saw the shores of the Atlantic. Delaney was six. Danica was eighteen months. A few weeks before leaving we realized something was horribly wrong with our baby, but the trip had long been planned. We went anyway. I will never forget how each mile of Route 12 seemed like one hundred as Danica screamed in agony in her car seat. Every single photo from our week shows Danica with a crooked head and neck wincing in pain and confusion. Through the years we have begged God to redeem that trip to Corolla in His time. He did this through the love of dear ones who have carefully watched our struggle and wanted to make some kind of respite happen for us all in a place we longed for and needed to return to.

The last week of May God made a way for my family and I to literally and figuratively “go over to the other side.” We left this life behind and took a real vacation to the Outer Banks of North Carolina. Our time was sacred in every way. The seven days we spent together were our happiest in at least six years.

The week was peace.
The week was still.
The week was completely calm.

We didn’t speak much about the trip before leaving. Our plans have a way of tragically falling through. Those who knew said things like, “You guys deserve this.” I would squirm. I know too much. I read too much. I pray too much. My heart touches too many lives that suffer and break without even a hope of a beach vacation. I never once thought this was anything but pure gift.

This is what Grace feels like. This is what Grace looks like. This is what Grace lives like.

My June surgery was all scheduled. We knew this week was in all reality the sum total of our summer fun. I spent the days taking continuous amounts of medications to fight the pain and feel the best I could to enjoy my family. I am always more well in the sun. I am always more well near water. I am always more well away from Ohio. I made a conscious effort to not even once say to my husband or children, “I have a headache.” I didn’t tell them about losing feeling in my fingers or my hands and feet going numb. I wanted our time to be about who we might be. I wanted it to be about who Dan and Delaney remember I once was. I wanted to know somewhere deep down inside I had the capacity to taste and see unfiltered good. There were minutes and even hours of this kind of clarity. It fueled our hope. For too long it has been deferred and made all of our hearts sick.

During our time we didn’t have a drop of rain. The seas were calm. The temperature perfect. It was like the great big God of the universe, our Father God, planned the weather for just us. We were sleeping on a pillow in the stern of the boat. We were resting. We had no idea here in Ohio there were several huge storms including high winds, hard rains and strikes of lightening. The same God who gave us peace also allowed a huge bolt of lightening to hit a very old and tall tree behind our home and split it down the middle. It did not just fall. The water inside the tree conducted the electricity and caused a bomb of sorts. It’s hard to explain unless you’ve seen something like it. It threw shrapnel chunks of the tree from the woods behind our home over our house and plunged deep into the front yard. One strike and the tree exploded. It was Tuesday night of our week away.

My father was coming by daily to check on our house and check the mail. When he arrived Wednesday afternoon our neighbor came running out to explain the war zone and show him the worst of it. Half of the tree split down the middle was hanging over their fence, into their yard, threatening their home. Another storm would most likely cause great damage to their property. He didn’t call us. He didn’t text us. He got on the phone with homeowners insurance and determined because our home wasn’t damaged they would not cover anything. He called several tree companies. A few would not even take the job. The position of the tree and the almost impossible way you could access it with necessary machinery would make the job a financial loss and risk. Finally he found someone to bring a crane up our neighbor’s driveway into our yard and do the difficult job of taking down the entire tree to the stump.

As we flew back into Cleveland Saturday night we hit lightening and bumpy storm clouds. We drove home in torrential rain. I held my head filling with pressure and pain and cried. I was thinking, “God, don’t you care if I drown?” I can’t live here. I can’t do this. Sunday morning Dan went out to try to mow our grass in between bursts of showers. He came in and told me in the most serious tone, “Someone stole one of our big trees while we were gone.” I laughed and explained how ridiculous that was. He then began to worry something bad had happened, and we would get some crazy invoice for it. I told him to go knock on the neighbors door and just ask them. He came back with a story I could hardly believe. My parents texted that morning asking if they could stop by after church. The photos and videos my dad showed us were astonishing. When we found out how much it cost to take care of the situation we went numb. $2800. I felt like throwing up.

Over the next day or so I looked up all the verses I could about lightening. God could have made that lightening strike any tree. We have a dead tree that is threatening our home, and we haven’t had the money to have it cut down. Why not that tree, Lord? What purpose did this storm have in our lives, my father’s life and the lives of our neighbors? I then thought of the passage from Mark. I reflected on the great love of my earthly father showing discernment and love by not calling us at all. He stepped in and took care of the disaster knowing we needed to rest. He paid the price knowing we did not have $2800. He loves us so much he did this sacrificial thing that pointed us to Jesus. At the very same time our Heavenly Father calmed the literal seas. He gave us peace. He reminded us who He is.

Today is my earthly daddy’s birthday. I celebrate him in new ways each year. Our relationship grows more pure as we both get deeper in our walks with God. I realize how very like him I am. When I look back across the landscape of our Gauntlet years I am brought to my knees remembering the countless ways he and my mother have done everything they could to love us and support us. We have come to trust them with our hearts and our storms. My father will do anything he can to calm the seas for me. He counts my husband as a son. He loves my daughters perhaps even more than he can love me, because that’s what love on top of love does. Most of all he points me to my abba God.

Calm seas.
Raging storms.
Father love.

All Grace.

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Even Giants Fall. Gauntlet Story Feast

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This week’s story is a flashback written by my friend Cindee five years ago. Many of us are not just walking the Gauntlet on our own. We have genetically passed the DNA glitches to our children and are navigating this painful journey with them as well. It is heartbreaking to see them suffer. In families like Cindee’s and my own, there may be a sibling who has been spared. All the guilt and gratitude the well child feels along with fear and sadness for their brother(s) or sister(s) swirls into a vacuum of physical and emotional pain we never could have imagined.

God brought Cindee and I together last fall in the most beautiful place at the perfect time in both our lives. Her kindred heart is treasure. She has faithfully covered me with her prayers and words. During my last plasmapheresis treatments she sent me a card with a poem every single day. Before my last surgery she filled an entire journal with handwritten quotes, poems and verses. They continue to be balm for the wounds of my soul.

Today Cindee is at appointments all day with her daughter Meg. They had PT this morning then four hours in the research unit this afternoon. Tonight they are helping genetics and their PT/OT clinic launch a brand new offering (Thursday Night Live) for teens with connective tissue disorders and their parents. This is what warrior moms do. We are not just fighting for our own children to have the most whole life possible but also for the ones to come after us. Will you please pray for my friend and her family today?

Even Giants Fall
By Cindee Snider Re

(This post was written about five years ago when Sam was 15 and about 2 years into diagnosis. Kyle was 17. The boys are now 22 (Kyle) and 20 (Sam). You may remember Sam shared his story here earlier. You will want to go back and read it if you missed it or are a new reader here.)

It was late Tuesday afternoon. My son Sam and I were driving home from Children’s Hospital. Traffic was heavy and although the radio was on, I wasn’t listening. Sam was. “It’s true, you know,” he said.

“What’s true?”

“That ‘you never know what you’ve got till it’s gone,’” he answered as the song’s chorus replayed in the background. “I never understood that before, never appreciated waking up and feeling good or being able to do whatever I wanted when I got out of bed. I just took it for granted, figuring it’d always be that way.”

Tears welled in my eyes as I struggled to find words to answer my son. In February, he’d been diagnosed with Eosinophilic Gastroenteritis, an auto-immune disease affecting his GI tract. He’d lost 22 pounds in ten weeks and spent time in the new acute care wing of Children’s Hospital. Sam’s illness had caught us off guard. He’d been a physically strong, able, active teen who regularly ate us out of house and home, and suddenly, overnight, he wasn’t eating at all and rarely left the house, rarely left the recliner.

Tuesday afternoon, four months into treatment, we were heading home from more appointments. “I’d give almost anything to go back to before I got sick and really appreciate what I had,” Sam continued.

His words sliced through my soul. “Oh Lord,” I prayed, “why does my son have to go through this? He’s only fifteen, such a hard age to be different, sick, unable to eat his favorite foods or go out to eat, and he never, ever complains. He just gets quiet and tries so hard to focus on something, anything besides the pain. This is hard, Lord!” I silently cried out. “And I don’t know if I’m strong enough to help him through this.”

My oldest son, struggling with similar emotions and rocked by the changes in his brother and their relationship, poured his heart out in song.

This is a song of my greatest friend,
The one whom I love and would die to defend,
Whose honor and loyalty have no compare,
A soldier in a battle, too much to bear.

(Chorus)
I thought that you were unbreakable
That my faith was firm and unshakable,
But now I find that I was wrong.
There’s only one Being who’s that strong.

I can’t stand that you’re in pain,
And I don’t have the power to take it away.
It’s just too much for me to take,
That even a giant like you could break.

(Repeat Chorus)

So hold on, Sam, this storm will pass.
Just hold on, Sam, this pain won’t last.
Hold on. Hold on. Hold on.
God’s got you in His Hands.

I feel like I’m dying on the inside,
And I’d rather run than face a lie, cause
When it comes to compassion, I’m hit or miss
But you stand and say that we’ll get through this.

And He’s watching, watching out for you,
Just have faith, and we’ll make it through
Together.

“Father, there are no answers, just questions and emotions and a family holding on in faith, knowing You’ll see us through, and that we’ll make it there together, hand-in-Hand, standing strong in You! Amen.”

Cindee

About Cindee in her own words:

I’m wife of 23 years to an amazing husband and mom of five creatives — Kyle, 22, Sam, 20, Sarah, 18, Anna, 17, Megan, 14. We’ve homeschooled for 16 years — kindergarden through high school. Quite an adventure! Our oldest graduated from college (with honors!) in May. Our home is often filled with teens/early 20s I’d claim as my own in a heartbeat. I love words, photography, nature, hiking, cotton, denim, and tea. And I crave quiet. Four of our five (and me) have Ehlers-Danlos, a genetic connective tissue disorder, through which I’m learning the deeper the valley, the greater the joy. I live in hope, grateful for grace.

Cindee’s blog can be found at http://www.breathedeeply.org

SHARE YOUR STORY. If you are walking a Gauntlet or are close to someone who is and would like to contribute to our Thursday community please email me at mkayesnyder@gmail.com, and I will send you the instructions for submitting. Share with anyone you know who might like to join our Gauntlet Story Feast. (Please use the hash tag #GauntletStoryFeast when sharing so we can find and follow one another.) Our Hope remains.

Photography by Cindee Snider Re. Used with permission.

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