Archive of ‘Team Danica’ category

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

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

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

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

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

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

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

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

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

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

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

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

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

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

His Hope will not disappoint.
Our Hope remains.

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

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

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Surgery Scheduled. Steady My Heart. A Team Danica Update

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

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

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

“God, I don’t think we can do this.”

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

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

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

“God, I don’t think I can do this.”

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

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

She believes.

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

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

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

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Holding It All Together. A Team Danica Update

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Gauntletphoto

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

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

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

“Even the ocean eventually meets with the sand…”

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

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

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

“Trusting the current will carry me.”

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

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

He is God. We are not.

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

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

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

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

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

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

He is God. We are not.

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

He is God. We are not.

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

He is God. We are not.

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

“Looking ahead we rejoice in You.”

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

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

He is God. We are not.

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

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

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

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

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

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

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