Archive of ‘Motherhood’ category

Home. Returning and Remembering

by

Weighted
“…Why does the Scripture echo with the twin commands to return and remember? It is because God’s promises always intersect with places. We relate to God and to one another in some place. To remember is to return. To return is to remember. Rootlessness is a kind of forgetting. And home is the dwelling place of memory.”-Christie Purifoy, Roots and Sky

Day 571.

It came through an email and then a formal letter. A notice that our lease here will not be renewed. The children held under the trust would like to move back into their home. The home where they lived with their mother when she died. The home they had to vacate immediately so it could be rented while the finances were handled. I’ve prayed for them. I’ve wondered about their hearts.

It’s a beautiful story. How God not only brought us to Tucson but prepared this house for us. I’m crying now because I cannot imagine having lived anywhere but this healing place. Although I’ve had two shunt surgeries since relocating I have healed more than I thought was possible in this life. I’ve lived more days out of bed, driving my girls to school, making dinner, doing a load of laundry and sitting outside with my face in the sun than I did in the ten years prior. I’ve had suffering but so much less pain. Almost every night I step outside and take a picture of setting sun. I walk barefoot across the pebbly desert path to the fence looking down into the wash and out towards the Tortolita mountains. I feel the evening air on my face. And I say, “Thank you.” I thought I held this miracle time here loosely. Faced with the vacate date on the letter I realized I’ve begun to take root.

Shelter is Dan and I’s shared insecurity. We have childhood reasons and young adult reasons. Both of us felt at one time or another we didn’t have a safe place to land and made desperate decisions out of the deep need and desire. When I met Dan I fell in love with his townhouse as much as I did him. It was the first home he purchased on his own. I worked in the real estate boom in Northern Virginia and Maryland, and he worked in the early days of internet sales. Between 1999 and 2002 we bought and sold five homes, all of them new construction. I was gifted at creating beautiful spaces and several of our homes we sold with most of the furniture and decor. All of them sold within a day or two. People walked into these places and wanted to stay.

If you’ve read through the days of Team Danica you know we’ve left homes. Perhaps the most painful was in 2011, after Danica’s second brain surgery and fusion when we moved into my parent’s basement. The facebook memory came up today, “Took a huge leap of faith and gave notice on our house today.The windows are open, and I hear a bird chirping. It reminds me, ‘Look at the birds of the air; they do not sow or reap or store away in barns, and yet your heavenly Father feeds them. Are you not much more valuable than they?’-Matt 6:26” I had to quit my job to take care of her while she was in her brace and wheelchair. I was also at the point I could no longer function with my own Chiari and instability and needed surgery. It was a miracle, a year and a half later, when we passed our little Rockingham ranch with a ‘For Sale’ sign and prayed for the impossible and God said, “Yes.” We weren’t even looking and barely hoping we could have our own place again. And oh how we loved that little home. I lived in my nest chair or in bed and friends would come to just sit in the sweet and peaceful space. Leaving our house, safely in my parent’s name to protect it from our endless medical bills, and affordable because of my own disability, was the riskiest part of this move west. Dan and I would have lived there until we died if it hadn’t been in Ohio, a place that was slowly killing me.

Now Delaney needs brain surgery. Out of state. Out of network. More daunting than anything we’ve faced. And we have to move. It’s heartbreaking for us all, but for Delaney to not be able to picture where she will recover is particularly agonizing. She inherited the gift of creating beautiful spaces and her room is her refuge. Dan and I’s great grief is we cannot give this stability to our girls. We could rent again. But we’ve learned how unstable that is. Apartment living is not really an option because of my mast cell. Even our neighbor’s dryer sheets here make me very ill if a window is open. For so many reasons where we live is medicine. It’s the safe place to be most well. We need some control over that.

I promised Dan we would face this problem head on when Delaney and I returned from NY and DC. When our trip was cut short by the health crisis and we flew in Sunday he pressed me. I was still in mama warrior mode. I needed to get the consult from my Maryland neurosurgeon. I needed to schedule actual surgery dates in NYC. I needed to take a breath and scan my own body for the pain and infection I’ve been ignoring. I broke apart. I told him we would look at apartments in the city of Tucson. This is what we can afford. No, we can’t, but we can try. How can we ever settle when my health and the health of our girls is forever in jeopardy? There will always be another surgery, more treatment, more than we can pay. We have been called to the achingly beautiful life of manna. No safety nets. No savings account. No college fund. No retirement. Still, we wake every day and there is Dayenu. Enough. More than enough.

As I was praying this morning I realized most of the world is now being asked to at least consider what it is like to live in this way. When everything else falls away what remains? Returning. Remembering. Home.

I picked up the contents of the girl’s lockers at their school today. They were bagged and put in the passenger seat of my car curbside. I drove to a little house north of here that’s for sale. It’s exactly the price we can afford if we could get a loan. I asked God to reconcile the struggle in my heart and make it clear through providence and provision where we are to go and to please pry my heart away from this dream of rooting in a specific place if He’s asking me to wander the desert instead. I prayed the verse I’d read this morning, “Give me a sign of your goodness.”-Psalm 86:17 As I pulled into our driveway I saw a large box on the front porch.

When Delaney and I went to New York last week we stayed in gorgeous condo in Hudson Yards. It was offered to us through a friend of a friend. It’s one of the most beautiful things we know through all our hard. There is so much kindness. This woman didn’t hesitate to open her home to us but also stocked the fridge with healthy food and left fluffy white towels, pillows and duvets. On the bed in my room was a throw blanket that looked loosely knit but was actually weighted. I slept like a baby. The first night I thought maybe it was my sheer exhaustion. But the second night I knew for sure it was magic. My relationship with rest is complicated. I’ve taken strong sleep medication and ativan every night for a decade. I swallow my pills and wait. And wait. And wait. Every synapse in my body fires. My legs twitch. My mind races. And I wait. This was a different kind of falling asleep and staying asleep. I texted gratitude to the angel who gave us the gift of staying there and asked her where in the world she got the blanket. Today my very own blanket arrived on my doorstep. I laughed and cried. It was God’s sign of goodness. Another beautiful story in this epic life of humbly receiving love. It was hope.

There are other signs today. There was a rainbow over the Catalinas in the pouring rain and the expressed heart of a church praying for us and the beauty of my parents loving us in the urgent and particular need of finding a home.

As the world shelters in place I think more than ever of Tony Woodlief’s words from Somewhere More Holy,

” . . . This is the story of how we reclaim the things that are lost. It’s also a story about how a home can be become sacred, and how in the process it can sanctify us as well. I can tell you these things because I have been in dark places–which is the only way any of us learns to love the light. . . Home is more than a place where we eat and sleep; it is where we learn grace, where we glimpse heaven. It is where we find or lose God, or perhaps where He finds us if we will only be still long enough to listen for Him.”

I can feel the collective world stilling themselves. These are dark times. As everyone returns home, whatever that looks like, may we remember the light. If we lose our way. If we forget the goodness. let’s remind one another.

Thank you for all your love and prayers. I’ve been particularly quiet this week. Tomorrow morning Delaney and I will have a phone consult with the Maryland neurosurgeons we were supposed to see in person. It will bring clarity to the surgical decisions made in New York. We have surgery planned for Monday June 8th for an ICP bolt to measure Delaney’s pressure for 24 hours and then the brain surgery on Wednesday, June 10th. It will be days in the hospital and then another week after discharge until a post-op visit that will clear her for travel home. It all seems impossible. But that is the awful place where miracles happen.

Our Hope remains.

Rainbow

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Grief. When lightning strikes again

by

Chiari Lightning

You thought
you had hit
every layer possible,
that you had found
the far limit
of your sorrow,
of your grief.

Now the world falls
from beneath your feet
all over again,
as if the wound
were opening
for the first time,
only now with
an ache you recognize
as ancient.

Here is the time
for kindness—
your own, to yourself—
as you fall
and fall,
as you land hard
in this layer
that lies deeper than
you ever imagined
you could go.

Think of it as
a secret room—
this space
that has opened
before you,
that has opened
inside you,
though it may look
sharp in every corner
and sinister
no matter where
you turn.

Think of it as
a hidden chamber
in your heart
where you can stay
as long as you need,
where you will
find provision
you never wanted
but on which
your life will now
depend.

I want to tell you
there is treasure
even here—
that the sharp lines
that so match your scars
will lead
to solace;
that this space
that feels so foreign
will become for you
a shelter.

So let yourself fall.
It will not be
the last time,
but do not let this be
cause for fear.

These are the rooms
around which your
new home will grow—
the home of your heart,
the home of your life
that welcomes you
with such completeness,
opening and
opening and
opening itself to you,
no part of you
turned away.

—Jan Richardson, The Cure for Sorrow, A Book of Blessings for Times of Grief

It was a September afternoon like most others during that season of my life. I’d worked from home all day on database lists ordered from non-profit and political clients through my employer outside Washington DC while caring for my not quite yet 2 year old Danica. A little after 2 pm I would wake her from her one hour afternoon nap, and we would drive to Holy Cross, a Lutheran church about fifteen minutes from our rented house on 35th St. We would wait in the parking lot for the bus from Lake Center Christian School to drop Delaney. She was in 2nd grade. My habit was to arrive a few minutes early. Danica would have a bottle in her car seat, and I would stare at the church steeple, breathe deeply and pray. The spiritual discipline of “hard stops” had saved me over and over. On that particular afternoon my heart was blocked with a sadness and a fear I couldn’t name. We returned home from the bus, and I put a pot of water on the stove for macaroni and cheese. I turned the TV on for the girls to watch a show while I checked in with work to run another list order. I was standing in the little kitchen with the indian summer sun warming my face through the window when the phone rang.

We knew something was wrong with Danica since her neck went crooked in May. They called it ‘acquired torticollis’. I’d managed my telecommuting job and driving her back and forth to Akron Children’s Hospital several times a week for appointments and therapy. Her pain and disability seemed to be getting worse. Finally a physiatrist ordered an MRI under sedation. This was the first time I heard the words “Chiari malformation.” They meant nothing. The doctor kept talking, Hannah Montana was saying “Sweet Niblets” and Delaney laughed out loud as I ran to my laptop and googled the words. I began to weep. The pot of water boiled over onto the stove and floor.

Two weeks ago Delaney saw a neurosurgeon at Phoenix Children’s Hospital. We heard those words for the third time. “Chiari malformation.” Danica. Myself. Now Laney. This time these words meant everything.

Chiari.
Complex Chiari.
Brain stem compression.
Complicated family history.
The doctor kept talking, but I quickly sunk beneath his words.

Since Delaney’s appointment I’ve been in crisis management mode. The fight for access to the many additional imaging orders needed and other specialist consults is all consuming. And it all feels much more urgent because my girl is a senior in high school with very specific plans for college in August. She has always been the one with wings so ready to fly. Except now she struggles to hold her head up.

I’ve moved through the past two weeks in a dense cloud of physical exhaustion, my own very real pain and what I now recognize as grief. But it’s a sadness and loss I’ve never known before. It’s not an opening of an old wound but something new altogether. After all we’ve been through this impossibly hard thing with my Laney has buried me alive.

God is meeting me in this dark place.

I believe there is generous enough grace to hold me there as long as I need to stay.

I believe there is strong enough grace to rescue me when every bit of oxygen is gone, and I must rise.

We will need kindness and shelter to make it through this next storm. I’m so grateful you are here. Thank you for praying for us. Thank you for staying.

“For the righteous will not be moved. He is not afraid of bad news. His heart is firm, trusting in the Lord. His heart is steady. He will not be afraid.”-Psalm 112:6-8

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Team Delaney. How Can I?

by

Laney Red

“Miracles don’t always make faith. Tangible proofs don’t guarantee trust. Suffering, loss, difficulty, questions, wrestling and the oceanic grace and unflinching presence of God do. And, perhaps, the fact that grace and nearness show up in those kinds of places is, in spite of us, the real miracle. Then as St. Augustine said, ‘If we but turn to God, that itself is a gift of God.'”-Michele Cushatt, Relentless: The Unshakeable Presence of A God Who Never Leaves

I read somewhere recently the age of seventeen is a critical stage in a person’s development. It’s the time when a child begins to tell their unique narrative differently than their parent’s might. We craft our kid’s stories for them much of their childhood. At some point they claim what is fundamentally true and retell the rest.

I hear my voice saying it hundreds of time over the past ten years. After learning of Danica’s diagnosis and my own people would always ask, “What about your older daughter?” I always answered, “Delaney is the healthy one. She got her dad’s genes.”

I got Delaney’s story wrong.

I look back now and see clearly when her symptoms began. About two years ago she started complaining of little things. Her perfect vision drastically changed. She would talk about pressure during big weather events. The base of her skull hurt. She would mention vertigo. She felt like blacking out when she changed positions. She was either burning up or freezing cold. During the early months of these sporadic issues I was having four shunt surgeries at Hershey Medical Center in Pennsylvania. I was planning the first Option EDS retreat, and we were praying about moving to Tucson. I wasn’t ignoring her. But I did explain some of the things away or asked her to keep track of how often she felt them and how severe they were. Our family lived focusing on the biggest fire burning at any given time so her little blaze grew just out of sight.

Once we settled in Tucson and her symptoms increased I took Delaney to a general practitioner and we received referrals to a cardiologist and geneticist. In July she was diagnosed with Dysautonomia and POTS, Postural Orthostatic Tachycardia Syndrome, and began a cardiac and an adrenal medication. The wait to see the geneticist was seven months.

Delaney’s symptoms escalated in the past sixty days. She would wake up and feel like she couldn’t make it to school. She would push through but come home and collapse in bed. She asked to wear my Aspen collar to support her head and neck. In certain positions her face would begin to tremble and go numb. There was a growing, painful soft spot in the back of her skull. I’d never felt anything like it, and I couldn’t find any medical literature describing it.

Her genetics appointment was last Thursday. We went knowing she would be clinically evaluated for Ehlers Danlos Syndrome and would also do some specific gene testing which takes about a month to get back. The geneticist felt the skull opening during her exam and was visibly alarmed. The appointment changed into a rush to have X-rays and blood work and urgent orders for an upright brain and cervical spine MRI. We drove the two hours to Phoenix on Monday for imaging. I didn’t bring up the scans until Tuesday night. Dear God. I couldn’t breathe. There is a visible opening to her brain in the back of her skull illustrated by the strange sketches of black and white on the screen.

Because the MRIs were ordered by a geneticist we technically had no one to consult about the results. Wednesday morning I sent a text to Danica’s Johns Hopkins neurosurgeon with a screen shot from the scan. He called me immediately. Before moving to Hopkins he was at Barrows Neurological Institute in Phoenix. I prayed he would have a suggestion of someone to see at least initially here in Arizona. Delaney has an appointment with a neurosurgeon at Phoenix Children’s Tuesday afternoon.

I cannot write about the multitude of emotions each of us are facing. I don’t have the luxury of laying those out right now. My fierce mother instinct and all my neurosurgical knowledge and experience has been preparing me for something I never imagined I would have to do. My fight or flight over the past week has depleted every bit of cortisol. I sat in the Target parking lot yesterday afternoon and sobbed. I texted Dan. “I’m so tired. Exhausted. Emotional. I feel like I can’t safely drive home.” The very real need to physically do each next thing trumps the feelings.

This is the update. Oh how we need your prayers. Much like when I blogged through Danica’s journey I will plan to update here so please subscribe if you would like to follow. It’s difficult to return texts, voicemails and emails. That doesn’t mean they don’t mean so very much. This is a lonely road. Our tangible needs are very real. I will also share those here when we get our bearings. We will need your help.

Please pray for Delaney. It’s her final semester of high school. She is registered at Arizona State University Herberger Institute of Design and the Arts to study Interior Design in the fall. She’s been working on the Tucson Museum of Art’s Teen Council. She’s in an achingly beautiful part of her life where almost everything seems possible and suddenly so much harder. Our narrative for her has always been one of God writing all her days. She’s seen lament and praise, suffering and joy, and need and plenty in a thousand ways. But what does she believe when road testing all these things for herself?

We talked about miracles this week. Someone well meaning already threw the word out there in a faith context that made me cringe. We’ve seen miracles. We expect miracles. But not in the waking up and the skull is perfectly healed kind of way. Not because we don’t think God is able, but because we know this is not the way faith works.

I’ve been reading through Michele Cushatt’s ‘Relentless’ for the second time. In a chapter about God being with us in our doubt she writes:

“Perhaps it’s time to revisit the miracles and evidences we’ve already seen. He has doggedly pursued us in spite of our every attempt to push Him out. His presence is big enough to enter into dark places, confusing places, ugly and beyond-understanding places and, by the sheer magnitude of his mystery, shine a light far too bright to be eclipsed by our doubt.

If I dare trust Him even here, doubt turns out to be a gift. A strange, hard gift, to be sure. But the means of a deeper faith. And if faith grows in a darkness with every sinister attempt to ruin it, then perhaps that is the real miracle after all.”

I’ve found Laney leaning into God this week. She’s turned up the music that speaks truth. She’s practicing the spiritual disciplines that often lead us out of the dark of doubt into the light of faith. This is her story. I asked her what song is meaning the most to her right now and she shared this. I’d never heard it before, and it’s left me with my eyes pointed to Christ. How can I thank Him? For even this? Because it’s ALL GRACE.

Our Hope Remains.

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Fear is a Liar. God is Enough

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Fear is a liar

“By faith Abraham obeyed when he was called to go out to a place that he was to receive as an inheritance. And he went out, not knowing where he was going. By faith he went to live in the land of promise, as in a foreign land, living in tents with Isaac and Jacob, heirs with him of the same promise. For he was looking forward to the city that has foundations, whose designer and builder is God.”–Hebrews 11:8-11

Have you read Hebrews lately? I’ve always loved chapter eleven. It’s like a highlights reel of the faithful and brave from the Old Testament. There are a lot of relocation stories scattered throughout. We know there was bold trust in God, but these men and women were human. They had the same needs and desires for a secure home, close family and friends and daily provision we all do. I picture Abraham holding a family meeting to discuss the big move. There was no elaborate relocation package or move coordinator provided. Just a sure call to GO.

Everyone asks how God picked our family up in early August and carried us here so quickly. Even though we’d prayed and asked you to pray for this move west for several years it always seemed just too hard and scary. There was a life changing gift in 2017 that began to make the way. After our trip to Tucson in May we took bold leaps of faith even to the point of preparing the house to sell and renting an apartment here, but things fell apart. In late July after two of the three shunt surgeries I journaled a prayer asking God to help me let the dream go if it wasn’t His will. I questioned if my deep desire to move was motivated by me selfishly wanting to be more well at the expense of my marriage or our family’s highest good. There were people who told me I should come here alone or the girls and I should come and Dan follow if and when he found employment. They said it would be choosing life. My husband sacrificed for me over and over again, and he stayed. When almost any other man would have left. He stayed. I would stay with him too.

From the very first serious talks about moving here I knew Dan was the most afraid. As the sole provider he did not believe we should move unless he had a job here. Finding a job here while in Ohio was complicated, and we did not have the resources for him to travel back and forth for interviews that might become dead ends. Dan’s resume is not deep. He worked faithfully for over a decade at his IT job to provide the best insurance coverage possible for the complex medical needs of our family, most notably many out of network physicians and surgeons. During a time when most men would be taking opportunities to advance in management or more responsibility Dan did not. He worked hard. He worked overtime. He took the menial jobs of hardware setup and moves that no one else wanted. He worked more holidays than I can count. But he never got ahead. Along with this faithfulness came a position of humility not many men are asked to take. He was a beggar. There was no way he could fully provide as our list of surgeries grew longer and our travel took us further. He assumed the position of grateful accepter of help. It wasn’t until the miracle phone call on August 2nd that he heard the clear directive to go.

Only a few of you have been reading from the beginning…since Team Danica. After her second brain surgery and big fusion leading into my own decompression and fusion we moved into the lower level of my parent’s home. There was perhaps nothing more humbling for Dan than that. In late 2012 God made a way for us to have our own home again. It was an accessible ranch less than a mile from my parent’s house and the girl’s school. Our medical debt was truly only beginning, but it had already leveled us. My parents bought the home and rented it to us with the spirit of it being completely our own. We loved it as such. I’m crying as I write this, because I miss that house every day. A little three bedroom ranch with a cozy nest corner I thought I might die in. For a family who felt so unrooted and who was struggling for light and breath in a basement this place was a gift beyond measure. My disability being approved allowed for our payment to be faithful and on time every month. We had no retirement, no savings account and lots of agreements to pay massive debt, but we settled in on the safety of having a home. We never took it for granted.

Moving here meant leaving the one thing Dan and I felt we most needed. Our home. It was terrifying.

This is what I’ve learned.
Fear is a liar.

I’d scribbled this from Ann Voskamp into my planner:

“The greatest motivator can be fear. This will kill you. The greatest fear can be that grace won’t be enough. We won’t be enough. This fear is a fraud. Let go of the lie. All fear is executed with one line. THERE IS ENOUGH. Fear invites the impossible to happen. All fear shrivels when you serenade it with one refrain: THERE IS ABUNDANCE.

This is my life song.
Dayenu.
Enough.
More than enough.
Manna.
Today.
Perfect love that casts out fear.
Gratitude.
Peace.

God gave us a buyer for our lovely home immediately. It cost $6,731.89 to move our things even though we’d sold what seemed like most of our furniture. (It turns out books are the most expensive thing you can possibly move.) Shipping Dan’s car was $1,350. Plane tickets for our family to fly here were $1,200. My sweet old 2003 Murano with the aftermarket backup camera that gave me my little bit of freedom and independence when I thought I’d never drive again was not worth shipping and would have never made the drive here so we left her behind. We had to rent a car for several weeks so I could immediately help get my girls clothes and supplies and settled into their schools. All of this seemed impossible. It was scary. But God made a way. We moved here with Dan on FMLA and no job. The one thing Dan said he wouldn’t do…he couldn’t do, he did. There were several months we completely lost our medical coverage, the one thing we thought we could never let lapse. But we did. There was a sure call to GO.

We came here on a 365 day plan. Through what I like to call “the economy of love” God’s provided this home for a year. We have seven more months with this view. God gave me a beautiful, safe, reliable car that will last for many years. It was literally dropped off in my driveway several weeks after we arrived here. Crazy love.

Dan and the girls are insured now, but I am not. I have Medicare, and I’m finding roadblocks for access to care over and over again. I’ve already needed to fly back to Ohio for my chemo. I’m due for an infusion now. Medicare has denied payment for this expensive treatment I’ve relied on for over two years. Dan is underemployed. He needed to take something. He needed to get at least some insurance coverage. We cannot live on his salary. The girl’s amazing, loving, God’s arms around them every day school is costly. Without it we never would have moved here. It is how we chose this part of Tucson. If they aren’t okay I would never be more well.

This is what I’ve learned.
Fear is a liar.

This is my life song.
Dayenu.
Enough.
More than enough.
Manna.
Today.
Perfect love that casts out fear.
Gratitude.
Peace.

The faithfulness of God has been our food and shelter and medical care. We’ve been supported by the relational redistribution of your abundance. It’s made us rich beyond measure in every way that truly matters. It’s a story you’ve helped write and one I’m only now beginning to tell.

Last week I felt the most well I can remember ever feeling. I’m fully alive for a reason. God did not bring my family and I here to live only unto one another. He is calling us out in more faith to trust Him for each next thing. He’s growing something from the investments you’ve made in us to give to others. I’m sure of it.

What is your greatest fear? Bring it out of the dark places of not enough and let God’s perfect love shine on it. Name it. Take a deep breath and risk to walk into the lie. It will lose it’s power.

Fear is a liar.
God is enough.

Our Hope remains.

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Dear God, (About Laney)

by

LaneyLookAZ

“Be alert, be present. I’m about to do something brand-new. It’s bursting out! Don’t you see it? There it is! I’m making a road through the desert, rivers in the badlands.”–Isaiah 43:19

Dear God,

I found a letter Delaney wrote to You. It was a gift, because all mamas wonder where their children’s hearts truly lie. I’m loving my girl in a more desperate way lately. Each day is one less I have with her across the hall. I question if I’ve loved her in the right ways, and if I’ve pointed her to You before anything else.

I’ve sat in this tiny corner of the world for so long now. She’s seen my faith in private ways. My open Bible in the morning. Music streaming about You. My knees on the floor at the bench where I go for the crying kind of praying. She’s seen my service to others through piles of letters waiting to be mailed or care packages sitting out until I get them just right. She’s listened to me take phone calls late at night from people I’ve never met, sharing our story, helping them take the next brave step in their own. She sees my eyes light up when I talk about the Option EDS retreat. She’s seen meals show up on days I could not feed her. She’s seen checks come in the mail from all over the world and understood they were Your provision for us through other’s hands and hearts. We haven’t been in church regularly. She doesn’t have the muscle memory of every Sunday worship and preaching. Instead we mostly gather around the living room and have “home church.” She says it’s one of the most special things about our family. I hope she knows the Body of Christ is as big as we’ve been loved, but the local gathering of believers is important and necessary too. I’ve failed her there. I’m sorry.

You’ve cared for her all those times I’ve packed my suitcase and went away. I always left her a letter to find. Surgery after surgery I wrote her as if I might not come back. I never wanted her to guess about how much I love her or how much peace she could find in You if it was time for me to go. You’ve given her a way of moving forward with joy even when things were so painfully stuck here at home. She’s seen me in unspeakable pain. She’s watched her sister suffer. She’s felt her daddy’s breaking heart for it all. And still she gets up and does life with a fierce expectation of good.

Lately I’ve felt the world pressing in on her. I’ve seen her scratch her head about people who call themselves by Your name but do and say things that look and feel so completely different than Jesus did. I’ve had to talk about nuclear war, sexual harassment and abuse, divorce and drugs. I don’t know if I’m getting any of it right. She is thinking about her future. I haven’t raised her to be looking for a husband or dreaming of having babies at fifteen. She knows my greatest calling has been in my role as a wife and a mother. I think this is enough. You’ve given her gifts. I tell her over and over again if she seeks You first all these things will be added unto her.

A few weeks ago I felt Delaney’s spirit hurting. Looking through her eyes I could see how small this cold and snowy street in Ohio seems. I was in so much pain. I was paralyzed with the fear of my brain shunt failing again. You made the way for us to travel to Arizona together. Just my girl and I. She fell in love with the desert. She could scarcely believe how happy and well I was when we were there. We spent every moment together, and it seemed to fill in empty spaces of time we thought we’d lost.

She talks about all this in the letter she wrote You. Moving our entire lives across the United States feels too scary. Four times I’ve left Ohio in February to find relief and heal. Four times I’ve come home knowing I could have a more well life in that place. But I was afraid. She believes us staying here. Me hurting like I am today. Me risking another invasive brain surgery. Me not being able to lift my head some days. Me biting my cheeks to try and hide the suffering. That it’s not the role of a martyr so she, Dan and Danica can have the better choice here. She believes what Dan has always said. She is only as well as I am. Why would I not take the risk to have the best life?

God, It’s true. I’m scared.

On our last hike through the saguaros we built an Ebenezer. “Thus far the Lord has helped us.” I believe You direct our paths through providence and provision. I know for sure with You all things are possible. I want Delaney to see You make the way in the wilderness. I want her to see You doing a new thing.

Give us the faith. Show us the way.

From You. Through You. To You. Glory forever.

Amen

Ebenezer LaneyandIAZ SaguaroShadows

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The Thorn. Keep Bleeding. Turn it into Love

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Gracelacedcover

The cursor blinks. I edit every thought before it can escape through my fingers. I’m back to a place of intense and unrelenting physical pain that clouds how I see myself, my family, my community and my faith. I’m at a point where talking about my suffering in any forum, even my close personal relationships, seems self indulgent. This thorn is not going to be removed. Be quiet. Try and make your life about something else. Anything else. 

Today I’m in bed with deep heat along my thoracic spine. I spent the first hours of my day making phone calls to follow up on recent adrenal testing I had at the hospital and pre-registering for one of several kinds of MRIs I need before my appointment next Thursday with my neurosurgeon in Maryland.  I wrote several cards to sister warriors recovering from their own surgeries. I was back and forth to the bathroom. I had a serious mast cell attack over the weekend leaving me more ill than usual. I cannot seem to recover. I will get dressed soon and drive to the girl’s school to deliver snacks for the golf team’s away match and pick up Danica. This will take any spoons I have left.

Yesterday I made a rash decision to take my Danica’s Rolo to boarding for a few days and nights. I spent Sunday in frantic pain, and I began to count the number of times I was bending to help put him on the leash or take it off or put him in his crate and get him out or grab him when he was chewing something he shouldn’t or was playfully chasing my little Twixie. I was doing more than before because Dan was working overtime again and Danica was still recovering from her fall last week. Her spine was hurting too. I woke with desperation. I had to know if being still could improve the suffering of neck spasms and the scary symptoms of dystonia in my limbs, neuropathy and loss of feeling in my hands and feet. Most of all I needed a break. The guilt overwhelmed me.

“What good is guilt? We ask. We like the sound of the question. It puts a crude finger on a heartbeat in us that won’t stop racing, a pulse broken in sympathy. It makes us talk. It makes us talk about ourselves. It makes us confess. We want to purge something even confession won’t justify…”–James Agee

Someone wise once told me guilt is not an emotion. You either are or you aren’t.  It is not my fault I am so broken and ill. But I did promise my daughter a dog if she would hang on those long days and nights following her brain and spine surgery. I let her draw pictures and dream of names and study breeds while she wore her brace and sat still. I took the money from my parents, and we drove her to meet this little dog who we all now love but wonder if we can keep. I am guilty of saying “yes” to something I should have known may be the literal straw that would once again break my back. And now I face the forever guilt of perhaps needing to give him away to another family better suited for his care. It is one more thing my children will have sacrificed or lost because of my disability. This is an overriding theme in their narrative. I’m missing for large chunks of time, either away for surgery, in bed recovering, skipping school functions, concerts and awards programs to avoid mast cell attacks, absent from volunteering in their classroom or for the PTF and building relationships with other families because I cannot commit to anything. I’m not guilty, but I’m confessing my heart breaks every single time my hard robs something from their good.

Gracelaced4

I’ve long loved the artwork and words of Ruth Chou Simons of Gracelaced. I was gifted a beautiful print that hangs framed in our bathroom. My 2017 calendar is from her stunning collection of desert watercolors, and I frequently mail her lovely notecards. Her beautiful book by the same name was delivered last week. Each page is a new gift. I am working through it slowly. I’ve stayed in the third chapter titled “Sufficient” for almost a week now. I’ve sat with the image of my thorn in the flesh, the one God has not chosen to remove. Ruth writes:

“We miss the lesson when we pick at the thorn…nurse it…bemoan it…curse it. The enemy would have us so blinded by the pain of the thorn that we can’t see the beauty of the rose garden. I’ve been there so many times…so consumed by the discomfort that won’t go away that I can’t experience what fragrance of grace lies just ahead. Look past the thorn to how Christ is enough in the midst of it. His Grace is sufficient for the thorn He chooses not to remove.

Friend, would we praise Him for His sustaining strength in our lives if it were not for reaching the end of our strength?

Would we consider Him enough if we did not find ourselves lacking?

Would we know humility if not for the discomfort of obstacles and the pain of intrusions?

Would we, as did Paul, rejoice to boast in weakness if not shown the truth of our Father’s seemingly backward paradigm of greatness–humility?

Today’s thorn stands guard over tomorrow’s rose. Don’t be surprised when our heavenly Father chooses to allow the wounding of our pride this day. He does so lovingly, sovereignly, and without mistake-in our unremoved pain-the rose we long to behold, just beyond the thorn.”

I’m weak. I’m poor. I’m humbled.

I’ve been meditating on I Peter 5:10:

“And after you have suffered a little while the God of all Grace, who has called you to His eternal glory in Christ, will Himself restore, confirm, strengthen and establish you.” 

Restore. Confirm. Strengthen. Establish.

The rose in the bud closed so tightly. I prick my heart on the thorn. It’s bleeding, but there is love in the blood.

Our Hope remains.

(Thank you for continuing to pray for our family. We are hard pressed on every side.

We need great wisdom to know what to do about Rolo. I’ve been in contact with a trainer who could work to make him similar to a therapy dog for Danica and myself. This would be a two week boarding situation away from our home and then some learning on our end when he returns. This is very costly and not an option right now, but it is the desire of our hearts. Whatever we decide please pray for Danica most of all.

Please pray for my trip to D.C. next week. The flying, brutal scans and appointment and the courage to face whatever we see in those images never gets easier. My dear friend, Kristin, who many of you have been praying for as she fought Lymphoma, is flying from Denver. She will drive me, and we will have sweet time together as friends. I also plan to meet the founder of Healing Hearts, the respite organization hosting Option EDS (the retreat) with me. There are some very specific financial needs associated with this appointment. Please pray I will be able to negotiate payment. We have maintained access to care with always enough. I am weary of the fight. I become more panicked when collections interfere with actual needed appointments.

Please pray for Dan and I. We feel like we are drifting and out of sheer exhaustion and pain it is difficult to make the space and time to reconnect. Our family is only as strong as our marriage.

Please praise God with us for protection over Danica during a big fall last week. She is okay. Please praise Him for provision for the window that needs replaced in Laney’s room. God showed up in the most amazing way to meet the specific request.  It’s such a relief to know it will be installed before winter.

He is still good.  Thank you for being the one’s carrying our mat to Him over and over.  We suffer gratitude.)

Gracelaced1

 

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She is nine. A Team Danica Update

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“She is nine, beloved, as open-faced as the sky and as self-contained. I have watched her grow. As recently as three or four years ago, she had a young child’s perfectly shallow receptiveness; she fitted into the world of time, it fitted into her, as thoughtlessly as sky fits its edges, or a river its banks. But as she has grown, her smile has widened with a touch of fear and her glance has taken on depth. Now she is aware of some of the losses you incur by being here–the extortionary rent you have to pay as long as you stay.”–Annie Dillard

DanicaRolo

Danica has a journal where she’s kept heart longings for recovery after her surgery. In her innocent child handwriting she wrote healing wishes. They are hopes like swimming, running and playing outside at recess with her friends again.  Every numbered list is a little different but each one has a common desire.  She wanted a puppy of her own.

When your child is facing brain and spine surgery and months of restrictions and losses before and after you will promise them almost anything and worry about making good on it later.  The dog was a yes like that.  As the summer began to slip through our fingers and Danica’s next big scan and neurosurgeon trip to Johns Hopkins in early August approached her longing for a dog grew.  The finances, logistics and the energy to make this addition to our family happen were difficult.  I was particularly hesitant because I know the majority of caring for a new dog falls on me once the girls go back to school.  My parents offered to help with the purchase, but I was dragging my feet.  Danica was searching dogs online for hours each day.  She studied breeds and made lists of names.  She kept a log of the money she had and asked how she could earn more to help with the cost.  And then she prayed.  Every night when I tucked her in she asked God to please bring her a dog.

She is nine.  Everything she’s endured has not hardened her, but she is changed.  She can’t go back and reclaim the losses or forget the suffering.  But she can believe sometimes putting something on a list enough times is like saying the earnest prayer over and over. She can believe dreams come true through the people who love you most and would give anything to see your pure childhood joy just one more time.

Welcome to our family, Rolo.

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To Be Changed. Option B

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Option B Close
“This is freedom. This is the force of faith. Nobody gets what they want. Never again are you the same. The longing is to be pure. What you get is to be changed.”–Jorie Graham

I’ve logged in to write here dozens of times since my last post. The cursor blinks, but I can’t seem to shape my ongoing heartache into words.

It’s been a month since I drove myself to the doctor to have my staples removed. Each chunk of metal she pulled loosened a deeply embedded piece of sadness. I wept. My dear physician gently reminded me of where I’ve been. She’s seen me worse. We talked about my adrenal crises in the past after surgery and the ways my very real physical symptoms feed my anxiety. We spoke about the trauma and grief of another wounding.

I’d seen my counselor earlier in the week as well. For ten years pieces of the life I thought I’d live have been falling away. I’ve begged God for restoration. Some kind of “magical thinking” has prevailed. I’ve still believed I will heal, and I will be more well. I’ve imagined the surgeries would eventually stop and the progressive nature of my EDS and all the resulting conditions would be slowed. Over and over I’ve visualized my body becoming strong again.

I’ve talked of loosening my grip, surrendering my life and opening my heart to this hard, but I’ve never fully considered that almost everything I hoped and planned for is ‘impossible’ now. In the face of permanent physical disability I have to accept the reality of my limitations.Rebellion

The only gift I wanted for Mother’s Day was Sheryl Sandberg and Adam Grant’s new book Option B: Facing Adversity, Building Resilience and Finding Joy. It’s rocked my world. How did I miss this basic truth for so long?

Option A is no longer available.

I began writing on two sides of my journal. The left side is full of all the things my life used to be and the ones I hoped and prayed for the future. I crossed through almost every goal or dream. On the right side is Option B. I’m still staring at the mostly blank page. I’m sitting in this empty space. I’m waiting quietly. I’m praying the words of Calvin Miller,

“Teach me the wilderness simplicity. Help me to point to You, honestly and joyously, as the threshold of all that really matters.”

This is the force of faith. I get to be changed.

My Hope remains.
Option B

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Struck. A Team Danica-Monica Update. And a Giveaway

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Struck Like a Bell

I get the notification every day on my facebook feed. You have memories. Most of the time they include a blog post from the old Team Danica blog where I was much more faithful about writing for you. They also include status updates about pain, sickness, medical tests, treatments, surgeries and hospital stays. Either I am asking for prayer and support or thanking you for it.

I’m tired of our story.
I’m sure you must be too.

Danica’s healing since her surgery has been a miracle. You know I don’t use the word without understanding the full weight of it. Our joy in the excellent news during her visit to Hopkins several weeks ago and celebration of removing her neck brace has been tempered by my suffering.

After a random April snow last week I’m convinced spring is here to stay. I am wildly in love with the birds and blooms. I want to slosh in the mud and hunt all things new. I want to sit still and study the rebirth of dormant life. This is the season when my hope is made visible. It is also when my mast cell disorder explodes. My skyrocketing histamines raise my intracranial pressure in tandem. My already hurting head and accompanying symptoms are somehow worse on these pollen soaked sunshiny days than when the roller coaster barometer reeked havoc on my fluid filled brain. I forget this happens every year. Social media memories remind me.

It’s holy week. Danica has been sick with a fever and headache since Saturday and home with me. After Dan and Laney leave each morning we’ve been reading through the Old Testament prophecies and New Testament Gospel accounts of the days leading up to Christ’s death and resurrection. We aren’t at the foot of the cross yet, but we see the sadness of Jesus as He nears and hear His aching lament. It comforts me to know my fully God yet fully man Savior understands the cry of a heart that trusts my Heavenly Father but wails just the same.

Tonight I am crying out.

It’s been hard for me to read and write since my shunt failed. I have always said the pressure is the one part of my complicated diagnoses that I cannot live with. A year ago I was so desperate I wanted to die. After three failed LP shunts God directed me to a vascular neurosurgeon at the University of Virginia who had only recently begun seeing EDS patients and was brave enough to help us. The VP shunt he placed gave me complete and lasting relief for almost a year. I didn’t take a day of it for granted. No matter how broken the rest of my body is I most desire to be mentally and emotionally able to think clearly, read, write and learn and form and nurture relationships. When my pain and brain fog cloud these abilities I become frantic. I’ve come to terms with all the other loss and disability, but I beg God to leave the core of who He created me to be in tact. My habit of voracious reading comes to a snail’s pace when I am in this much pain and lose so much vision in my right eye. I edit my list of books and slog through the ones I most want to read. “Struck: One Christian’s Reflections on Encountering Death” by Russ Ramsey moved to the top of my stack.

I read it cover to cover in one sitting. Like always, I read with a pen to mark up the margins and a journal to copy words I needed to save. I have to admit there were points in his story I felt upset. All the things he was experiencing with one sudden diagnosis, surgery and recovery I’ve been through repeatedly. In the last ten years many people have begun a conversation or note or email with something like, “It’s nothing compared to what you are going though…what you’ve been through, but…” I cringe. Every time I cringe. Here’s the thing I always tell people who are going through different but no less hard things,“There is no monopoly on suffering.” Once I got past the self indulgent contrast between my life and his I began to gobble his experience seasoned with truths.

Days before I picked up “Struck” I’d read an article on Desiring God by Matthew Westerholm titled “Lament Like a Christian Hedonist: How Joy in God Bears Real Pain.” I book marked it and returned to it several times. I found comfort in the reminder it’s biblical and okay to wrestle hard with your hardships. It was this prepared soil the seeds of chapter fourteen fell.

Because the Lord often withholds explanation for our pain, we must not look at suffering as though it is some divine gimmick designed to teach us some important life lesson. That would make too little of the reality. God’s people do not walk through suffering toward the moral of the story. Rather, we walk toward the eternal presence of the Maker and Love of our souls, This I must remember…Suffering is not an event. It is a path…There are plenty of advisers out there who would counsel me to dress this up with positive thinking. But I do not think it would be honest to try to pad my experience with cleverly contrived optimism that denies what is true. My faith in Christ provides a deeper, truer way. I want to feel my sorrow. I want to walk in it. If the Lord walks there with me, what possible advantage could there be in conjuring any other way? No, I choose the road of suffering, and I pray for the courage to walk it honestly. The truth is my heart is broken. I need time to say as the psalmist said, ‘When I remember God, I moan, when I meditate my spirit faints.’ As part of my confession of faith, I need to say that I am not okay–not completely.

Tonight I am not okay. I can beat on the breast of my Father God, and He will hold me close and listen to every cry. “Though I continue to ask why, more often than not the question on my mind is ‘What’s Next?’ Sometimes He will answer, sometimes He will not. And I will again have to lean on what I know of who He is when I cannot make sense of what He allows.”

The God of the universe. The same God who sees Syria tonight. The same God who sat with my beloved friend this afternoon as she met her oncologist to see if her brutal cancer treatment is working. The same God who watched my sister and her family bury their dear Pops today. The same God who sits in the psych ward at the bedside of a fellow zebra’s husband who tried to take his life because he cannot bear to watch his wife and children suffer any longer. The same God who formed my Danica in my womb, fearfully and wonderfully, errant DNA and all and knows why she is running a fever for so long. The same God who sees my CSF logged brain and feels the bulging behind my right eye. He is good. He suffered hell for me. Love like that can be trusted with ALL THIS.

As I lay my throbbing head on a tear soaked pillow tonight I pray Russ’s song of lament:

Lord, You are with me. We walk through the valley of the shadow of death together. Since I do not know the way, I have no choice but to trust You. To trust You means I walk a steady path believing you are with me. The sound of my footfall echoes the two operative words you use to call me to the communion table–remember and proclaim. I remember that You are a Man of Sorrows, acquainted with grief, and I proclaim that I have no better guide. I have no better guide for two reasons: because You are God and because no one has stepped forward to lead me in a worthy manner. So I follow. What else can I do?

I haven’t asked for prayer lately.

I am tired of our story.
I’m sure you must be too.

But God is not tired. He does not grow weary or faint. Danica asked me to post something on facebook this afternoon when her fever spiked. Her childlike faith remembered your prayers for her miracle and wanted the same prayers for her sick body now. I was humbled. Won’t you please pray for her tonight? If she is still spiking by morning we will head to the children’s hospital. Please pray for my brain. I am terribly anxious about our trip to Charlottesville on Monday and my procedure Tuesday and what the next steps might be. I am terrified of a shunt revision. Please pray for Delaney. She is so sad about Dan and I leaving next week. She wants the joy of the sunshine and warm breeze to play as a song in our home instead of the dirge of sickness. Please pray for my Dan. He worked overtime this past Sunday offsite to help pay for another expensive medical trip, and he is working all week and then Saturday and Easter Sunday so he can take the days off to drive me to UVA. He is exhausted. He comes home to do laundry and dishes and look into the faces of a woman and children he loves desperately and wants to save somehow. Please pray for healing and provision and strength and Grace to do each next thing we think we cannot do.

Our Hope Remains.

What is your song of lament tonight?

I’m listening to Michael Gungor’s “Beautiful Things.”

I’m giving away a copy of “Struck: One Christian’s Reflections on Encountering Death”. Comment here on the blog or on social media with your heart cry by Sunday night. I will randomly choose a winner from the comments and send you a copy of this special book.

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Exhale. Learning to Breathe Again. Opening My Hands. A Team Danica-Monica Update

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ButterflyOpenHands

“Unexpected Grace always settles in the palm of Heaven turned hands.”–Ann Voskamp

It’s perfectly quiet here this morning except the achingly perfect coo of a morning dove. The comforting bird song I’ve treasured since I was a child lulls me into deep breathing. Since Arizona I’ve returned to practicing meditation. I’m learning much about how often my mind wanders away from truth to fear. Each breath in and out is a chance to BEGIN AGAIN. No judgment. Back to Jesus. I’m realizing how Grace can be simplified to gratitude for each next long inhale and exhale. Every intricate detail of my physical being is a miracle. As I scan my body for pain I pray through the suffering. I’m alive. I am filled with the Spirit of God. My body is not an enemy. I end each session with the words from Psalm 19:14, “May these words of my mouth and this meditation of my heart be pleasing in your sight, LORD, my Rock and my Redeemer.” I arise in strength and dignity.

March is a month of hard for us. Every spring break for my girls the past decade has included some kind of medical trip for Danica and I or surgery for me away from them. This year will be no different. During certain seasons I return to what I’ve written to gain perspective and remember God’s faithfulness when I am discouraged. I wrote this in March, 2014:

I’m looking at the flat, barren landscape of 71. This stretch of pavement between Columbus and Cincinnati is one I have grown to hate over the years. If you paint our journey with a broad stroke or view this piece of art from a distance you may only see the colors of hope and healing. They are vibrant and breathtaking. But for us, the ones who have watched this masterpiece morph, no matter what news comes at the end of these trips, the road is bump after bump of pain literally and figuratively. The dark shadows most think we should have moved on from are still looming at every mile post. We see the financial drain each mile we move closer. No matter how God has provided we still come to this thicket wondering when and where the ram will appear. Our new year deductibles chase us. Knowing the cost is thousands of dollars to even walk in the door is a weight we drag behind us like chains on our ankles. Because of my shunt revision surgery , Maryland trip out of network, more hotels nights, more driving, more of it all we gasp for air. There is no choice but to keep moving even though it feels like quicksand.

I canceled this important trip earlier this year, because I was simply not well enough, and I just didn’t have the strength to do this. Weeks before we come here I begin to have racing thoughts about the hotel, the hospital, the anesthesia, giving our girl up to strangers for hours while we wait, and the dark room where they show us the scans. I hate the smells and the glazed over look in almost everyone’s eyes as they wander from appointment to appointment or down from their child’s room to get a meal in the cafeteria. I have flashbacks of Danica in those days following her surgery when she thrashed insanely in pain, and I went days without sleeping trying to save her and orchestrate her care. In the end there is the obligatory gift shop trip to reward a little girl in some tangible way for her bravery in all this, and it seems like it is all a bad Lifetime movie. Only this is not two hours with a happy ending or at least some inspirational and didactic meaning to carry away. This is our life. My chest is tight. My head is aching. I know the exhaust of the cars and trucks on the road are adding to my increasing feelings of anxiety and manic mind and heart. The silence between Dan and I grows more caustic. He closes himself off. It has never been any different. I want to talk this all through for the thousandth time, and he just needs to drive and do what needs to be done. I begin to cry. Every single time tears begin to fall down my cheeks the closer we get.

I remember the first trip here. It was April 2010, almost exactly four years ago. We knew Danica’s decompression in November of 2009 for her Chiari malformation had failed. Many of her symptoms had returned and even escalated in the few months since we let them cut open her head and neck and shave away bone from her vertebrae to make more room for her brain. Her little neck falling to the right again was the most glaring sign we did not succeed and perhaps had even made her worse. Suddenly we needed to be much more informed about the condition and what underlying genetic mutations might be causing it. We were scared. Although the first brain surgery was scary, we still believed it was something really hard God was asking us to do just for a time. We thought it was something broken in our girl we could fix. Our first trip to Cincinnati solidified this “C” word was here to stay.

Our “simple” Chiari story which seemed like a miracle for the first few months became our entire life. You began to read here and raise money and pray. We were overwhelmed as people from all over the United States and the world wanted to support us here at our little blogspot blog which became Team Danica. I had always been a writer, but I never needed an audience for what I scribbled and pecked away in private. I even tried to hide my writing. Suddenly, I had hundreds of people checking in for updates, and not just to see how we were or what the plan was but to truly share our hearts in all this. Somehow, in all the lament and torment of those early days, this place became where I could honestly share what this kind of journey looks and feels like. Dan joined occasionally to show his husband and daddy heart. It wasn’t always easy or cathartic to keep coming back here, and I took breaks for sure because of fear or sadness or just plain exhaustion, but whenever I would stop writing people would email or message or call and tell me they needed to keep reading and following. Team Danica became as much a blog about my health and journey as our sweet girls’. Still you came to read and pray and support us.

Four years we’ve been here.

The well of love has always been deeper than the well of pain and suffering.

The strength and grace of our God has always been ENOUGH.

The provision has always come.

Our Hope has remained even on the darkest days, because we believe.

We believe because He causes us to trust and loves us even when we don’t.

. . . We are here in the hotel now. Michael Card’s “Sleep Sound in Jesus” plays on my itunes while I type. Dan and Danica are drifting off. I can see the Children’s Hospital sign lit up in the dark from our window. My prayers try to cover the hundreds of beds full of children who sleep there tonight fighting some illness, healing from a surgery, waiting for a diagnosis and the parents who sit vigil with them. I pray for the doctors and nurses who sacrifice to join in these wars. I pray for those who do not have a voice like we have to ask for prayer or support or a meal or a hug.

I feel a calm peace about our tomorrow. It may be my Ativan (smile), but more likely it is the prayer with Danica before bed and heading back to the arms of Jesus in the simple words of these lullabies. I am reminded of a God moment from my Tuscon trip when He allowed me to see a big picture view of our life as it intersects so intricately with people we don’t even know.

On my last flight home from Atlanta to Akron/Canton God sat me next to a woman from Wichita, Kansas. I was tired and grumpy and very anxious about how my body was going to react to the pressure and weather changes. I had the best and healthiest week of my life since before Danica’s diagnosis. Besides missing my family I did not want to come home. I politely settled into my window seat and asked her where she was from and where she was going. She asked me the same questions. I mentioned my shunt surgery and a trip to heal. She asked me why I had a shunt, and I shared a quick headline blurb. I really wanted to finish writing in my journal and listen to some music on this last flight. She told me her nineteen year old son Jack was born with a spinal cord issue and at four months old they flew him to Cincinnati Children’s Hospital for surgery. Guess who Jack’s surgeons were almost twenty years ago? Yes, Dr. Kerry Crone, neurosurgeon and Dr. Alvin Crawford, orthopedic surgeon, banded together in a joint surgery that had never been done before. This was no coincidence. We gushed our stories to one another through tears. Then it came out and stopped us both in our tracks. It was the summer of 2010. Danica was scheduled for surgery and Dr. Crawford pulled out leaving us with a brain surgeon but no willing bone surgeon. Far away her son Jack was also scheduled for his last orthopedic surgery with Dr. Crawford to fix an issue with his foot. He was fifteen years old.

We now know Dr. Crawford was considering retiring that summer and so he was shying away from difficult cases he could not follow, especially a little girl with atlas assimilation and a failed decompression who no one else wanted to fuse until she was six or seven. Jack could have had one of Dr. Crawford’s up and coming surgeons, and it might have been fine, but it wouldn’t have been what their family needed or wanted after so much care from one man. I can still see myself praying on my knees by Danica’s door at our house on 35th St. I didn’t understand why God would bring us to this dark place if He wasn’t going to see us through it. If you go back in the archives and read my wrestling, the tension in Dan and I’s marriage, the palpable hysteria of not knowing where to go next you will understand in part my desperation. Suddenly, Dr. Crawford was back on board. He put himself completely into Danica’s case including designing the special hardware and having it made and taking her images and having a 3D model of her skull and cervical spine made to teach from. Jack got his surgery too. He is doing well four years later.

I can’t think of any other way God could have shown me how brilliantly He in charge and how little we need to know about it to trust Him. One of the most beautiful lessons I learned early on in all this was how most of what is happening to me and around me is much less about me than I ever could have imagined. Yes, He’s working in and through me but it’s for something so much bigger. Oh how I cheapen my life when I make my God small. I see in a mirror dimly what He will make clear someday. For some reason He chose to clean the mirror a little on my flight so I would SEE Him in even the last hours of my trip…

I promise for a quick update on the brain part of our trip tomorrow. Danica’s MRI is scheduled for 7:30 am, and we will see her neurosurgeon, Dr. Crone, at 11:15 am. The orthopedics scans and visit are on Tuesday. We have every reason to hope for a perfectly good scan. Danica has almost no symptoms of Chiari or any neurological deficit at this time. Thank you for praying for the anesthesia to go smoothly and for all the details of the day. We treasure your lifting us up! Please pray for our Laney who is back home with my mom. She was very emotional about us going and called crying twice today. This is not like her, and it breaks my heart. It was a reminder how much each one of us carry around because of Danica’s health and especially what Delaney has been asked to walk through since my pregnancy with her little sister. She is so brave and independent, but the first to say we should move to Arizona so she could have her mama back.

No matter what you are carrying tonight, I hope this wandering of words down our past four years and the glimpse He gave me of His sovereignty will encourage you to not crumble under the weight of what He asks you to bear. He is doing something bigger than you can see.

I know it for sure.

A year ago we planned the girl’s spring break as another trip to Cincinnati. We thought it would be a graduation of sorts. We were sure it would be a celebration of complete fusion and release for Danica to finally be able to return to the childish play she’d longed for. Instead we found her broken hardware. I took a long jagged inhale and held it. I am realizing now I hadn’t exhaled for the entirety of the past year. On my recent trip to Arizona I remembered to breathe again.

Monday we will leave for Baltimore on another spring break. We will see Danica’s neurosurgeon at Johns Hopkins and look at new scans. We expect good things, but we go with open minds and hearts to whatever they show.

Seven years we’ve been here.

The well of love has always been deeper than the well of pain and suffering.

The strength and grace of our God has always been ENOUGH.

The provision has always come.

Our Hope has remained even on the darkest days, because we believe.

We believe because He causes us to trust and loves us even when we don’t.

Thank you for praying for us. I am still recovering from my chemo treatment Tuesday. My shunt is simply not working properly, and I cannot deal with the needed steps to move towards fixing it until we get through this Maryland trip for Danica. The financial avalanche begins to take us down by the third month of each year. I spend hours each day on trying to sort through what must be paid for continued treatment, what necessarily will fall into collections and what must be approved by insurance for the next access to care. I make hotel reservations not for fun but for bodies flung in exhaustion. Dan takes vacation for a road trip to doctors and hospitals.

I wonder what it would be like to heal without this stress. Could I be more well?

I believe Jesus paid it all. I cannot feel guilty about something I did not choose or cause. He has always been enough. He will always be enough. He is enough. Open Hands.

I’ve been listening to Laura Story’s new song by the same name on repeat this week. The Lord gives and He takes away. Blessed be the name of the Lord. Our Hope remains.

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