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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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Vulnerable.

by

Warrior
“‘What is it you’re frightened of?’
asks my warrior side.
What fills your heart with such dread?
‘What happened to your coat of bravery you wore so confidently?’
I feel like a deer sometimes, I answer.
I’m not always like you.
I want to lie down in flower-kissed pasture,
let my eyes close against the sun.
I don’t want to be poised for battle, I say.
My buttons can’t always cover what’s inside.
Don’t be disappointed by what you see, I plead.
More kindly now, my warrior side asks,
‘But what is it you are really frightened of?’
The possibilities of the inevitable,
I manage to say in my soft deer voice.”

-Beverly Hyman-Fead, Patient Poets: Illness from Inside Out, Marilyn Chandler McEntyre

Today I’m the deer.
I want to lie down in a safe pasture with the sun in my face and cease to fight.

I’m terrified of Chiari. It was the first enemy. Both Danica and I slayed her. She’s resurrected and attacking my unsuspecting Laney girl without warning.

I’m angry from battling for insurance coverage for necessary imaging for Delaney and now the process of appeal for the ones denied. Maybe it’s just a cover for how mad I am this is happening at all.

I’m frustrated from fighting for care for an injury behind a tooth that has taken me to six appointments at four different dental specialists with no resolution.

I’m afraid of how sick I feel as persistent infections rage and my brain burns. There is no plan for treatment.

I’m devastated by the re-tethering of my spinal cord for the third time. I’m losing the feeling in my legs and feet. My neck is pulled backwards when I straighten my spine. I’m finding ways to curl up when I sit on the couch or in bed to make the stretching and burning less. If I sway in my belly hardens with contractions like labor. I’m not emptying my bladder fully because I cannot feel it. I’ve had two UTIs in the past month as a result. I will not seek surgery again until I’m unable to walk. I cannot.

I’m grieved by the hard decisions to close two doors to people and places I was sure God called me to this year. Things I wanted to prove I’m turning this pain into purpose. Things I wanted to prove I am doing something else with my life than just this surviving.

I’m heartbroken by the loss of intimacy with several close people in my life. I risked talking about my hurt. I forgot it’s safer to keep it to myself.

I’m lonely in the way being chronically ill always will be. Because only someone enlisted in the same war can crawl into the foxhole with me. But they can’t turn to look me in the eyes because our enemy is relentless (and their neck is most likely also fused). There are so many beautiful people waving flags and cheering from a distance. But I need triage instead of a parade. You can’t see that from over there.

I’m furious my children need a foxhole too.

I’m pretending like a good soldier. My husband needs me to say I’m okay. My girls need to feel I’m okay. If the bile starts to come up I swallow hard. Remember Monica. If you say you are hurt too loudly people may decide to walk away.

I’m ashamed. After all God’s faithfulness to my family and I how can I feel this hopeless about where we will live in a few months? This need to know where we will shelter trumps everything else all the time. Dan emailed today, “When are we going to talk about moving?” I’m paralyzed. This is just one more thing I am supposed to figure out.

I’m exhausted. Every night I sleep less my joints get looser and my body weaker.

I’m just so very tired.

Chronic illness is fraught with imagery of battles that might be won or at least an enemy that could be held at bay. We call ourselves ‘Warriors’ in the fight for big and little things in our lives especially access to care. This rubs against a faith that bids us to surrender to the will of God and His perfect plan knowing that might include long term suffering and even death for His glory. My mind and spirit are confused and fatigued by both.

I just want to lie down.

I didn’t prepare the FedEx with twenty pages of notes and reports and the discs of Delaney’s scans for the neurosurgeon in New York. I couldn’t write an encouraging note to someone else to shift any of this weight into kindness even though it’s what saves me most of the time. I didn’t make the pasta dish I promised the girls I would. I texted Dan I simply cannot pick the girls up from school even though it’s his gym day.

I’m paralyzed.
I wish I could scream.
I wish I could run.
I wish I could defect.

Instead I hear a tiny whisper of truth from a Word hidden in my heart.

“The LORD will fight for you; you need only to be still.”-Exodus 14:14

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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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Take the Risk. Brave Medicine

by

Brave Girl

“Few people outside medicine realize that what tortures doctors most is uncertainty, rather than the fact they often deal with people who are suffering or who are about to die. It is easy enough to let somebody die if one knows beyond doubt that they cannot be saved – if one is a decent doctor one will be sympathetic, but the situation is clear. This is life, and we all have to die sooner or later. It is when I do not know for certain whether I can help or not, or should help or not, that things become so difficult.”–Henry Marsh, Do No Harm: Stories of Life, Death and Brain Surgery

I’m lucky.

I have Ehlers Danlos Syndrome, a genetic connective tissue disorder that affects every fiber of my body, mind and spirit. I was misdiagnosed for thirty-five years. It wasn’t until my two year old daughter exhibited extreme symptoms, and I fought for her like I never had for myself, that I found answers for my own suffering. After her first Chiari decompression failed and her little cervical spine became more unstable I set out to find the best care possible.

It was world renowned neurosurgeon Ben Carson’s book, Take the Risk: Learning to Identify, Choose and Live with Acceptable Risk that guided me in those adrenaline filled months of searching for any kind of help and hope for Danica. The entire book addresses medical, spiritual and practical life situations, but it was these four questions he always asks himself when facing an important surgical decision that helped me most:

1. What’s the BEST thing that can happen if we do operate?
2. What’s the WORST thing that can happen if we do operate?
3. What’s the BEST thing that can happen if we don’t operate?
4. What’s the WORST thing that can happen if we don’t operate?

Danica’s case was complex, and she was not even three years old. All the neurosurgeons we consulted with agreed she needed another decompression and that she needed fusion but only one team of doctors, a neurosurgeon and a brilliant orthopedic surgeon, were willing to actually TAKE THE RISK to give Danica the best chance at some kind of childhood. This risk saved her life.

There was a period of several months between a commitment to operate and the actual surgery when one of the surgeons took a step back, and we thought the chance for help was gone. There is an incredible amount of trust needed on both sides of these relationships. I thought he was reconsidering the odds of success in Danica’s case and us as parents. I later found out there were all kinds of things happening behind the scenes at the hospital and in his personal life that had nothing to do with us. I began to understand dedicated physicians are professionals making critical life or death decisions and then heading home to a family and all the important and mundane things this requires. I approached every new doctor I met with this newfound compassion and respect.

Danica’s surgery was groundbreaking. The surgeon I mentioned above created a 3-D model of her skull and fusion hardware that would grow with her tiny head and neck. Because it was a teaching hospital dozens of orthopedic and neurosurgery residents learned from her case directly and through the resulting medical literature. The very personal risk we took and the professional risk the doctors and hospital took resulted in many lives being changed.

These same surgeons recognized the similarity in Danica and I. They sent us to genetics for a diagnosis that would change everything. I finally had an answer for a lifetime of my own widespread pain. Once Danica was stable enough in her recovery I began my own search for doctors who were willing to take the risk on me.

This began with a general practitioner who sat across from me while I sobbed my story, looked into my eyes and believed me. Over time the trust we built in one another became critical in my care. She stretched the boundaries of the recommended and acceptable doctor-patient relationship, because I needed this level of involvement. She fought for me in situations I simply could not advocate for myself. This commitment was not hers alone. At every point her husband and young children were sacrificing something personal as well. She ran a one doctor practice. I was a patient who needed more than a twenty minute appointment every sixty to ninety days. I needed her sometimes weekly. I needed pre and post-surgical care. I needed her to research and try and understand all my comorbid conditions. I needed referrals and coordination of care with genetics, cardiology, hematology, urology, gynecology, endocrinology, oncology, neurology and neurosurgery. I taxed her and her small staff in every possible way, but she never wavered in her support.

I’ve seen the most dedicated specialists in the United States to treat my Chiari, Cervical Instability, Tethered Spinal Cord, Tarlov Cysts, Intracranial Hypertension, Autoimmune Encephalitis, Endometriosis, Dysautonomia/POTS, Mast Cell Activation Disorder and Bleeding and Clotting Disorders. Every one of these doctors has stepped outside what could be a comfortable, career climbing and lucrative practice of medicine to treat patients like me. They are as rare as the zebra patients they care for. They listen closely, examine the entire body and try to understand the systemic result of Ehlers Danlos Syndrome.

Over the past few months one of my trusted surgeons has faced a firestorm of criticism for some of the decisions he’s made. I’m able to look at the situation from many different perspectives. I understand the position of a large hospital and peer review and the vulnerability of everyone involved. I also know for sure this one man’s willingness to TAKE THE RISK to try and try again and again to find something sustainable to bring relief for my intracranial hypertension SAVED MY LIFE. There was no one who was willing to take on EDS patients and our specific vascular neurosurgery needs. We were suffering. We were hopeless. I was so hopeless I wanted to die. He humbly sat by my bedside when something failed and would rethink the anatomy and the engineering, and he wouldn’t give up. He was the crack in the doorway shining a little light on the wasteland of pain. Would medicine ever move forward without this kind of courage?

I’ve had more than several dozen surgeries of all kinds. Every time I’m given a rundown of the possible complications and risk. I sign my name. My husband or father or sister or friend, whoever happens to be with me that day, watches me sign my name. I’m grateful for access to their specialized care. I’m grateful they are brave enough to operate on someone as high risk as I am when literally no one else will.

Two hundred and forty days ago I had my last surgery. It was my third in two months, and I was desperate. My surgeon came and proposed something new, and I was all in. Yes, I trusted him. But I also trusted the hospital to support whatever decision my doctor and I made together. I expected them to support us that day and in the weeks and months following.

Much like when Danica’s surgeon stepped back from her case for a time, I don’t pretend to know all of the personal and professional things happening behind the scenes of this particular situation. But I do know it’s not easy for anyone involved. I hold the hospital more accountable than my own surgeon, because he is human and they are a large organization with a responsibility to back him up when something gets really hard in his family or his practice. He is a pioneer, but he is not rogue. I also hold patients like myself accountable. This delicate relationship only works if we are all trusting one another.

I’m now faced with new information about the surgery I accepted then. I know I made the exact right choice for me that day. I know I’ve had the most well life possible because of that decision. I’m needing to make a new decision about the most recent shunt and placement of it in my body and the risk involved. And this is okay. My family and I are asking ourselves the same questions above that we used to decide about Danica’s surgery so long ago.

In all the confusion and the new recommendation for removal of my lumboatrial shunt I reached out to my Ohio general practitioner, and she called me on Sunday, her day off, to discuss. I emailed my counselor, and she called me and spent an unscheduled hour to talk me through it all. I texted another trusted neurosurgeon who’s been inside my body over and over again even placing several lumboperitoneal shunts early in my IH journey, and he texted me back.

One of the most critical and controversial issues in my care is the ability to access specialists when faced with emergency situations. I believe this too has saved my life. In a perfect world our doctors would receive timely information through HIPPA approved channels of communication, but this just isn’t happening. For a special group of people the rules can’t apply. The physicians need to be trusted with the discernment to give their cell phone number to someone who might never be connected through the answering service. They need to be able to send an email and check on someone post-surgery. When the majority of their patients travel from all over the United States and even the world they understand this kind of follow up is the most practical. This kind of personal medicine works. This too is a risk.

Dr. Carson writes in the aforementioned book, “Faith by definition is a risk.” I have moments and even hours where I feel peace about the new surgical decision I think God is asking me to make. Admittedly, the rest of the time I am a wreck. The most wonderful thing about the foundation I stand on through all this is I cannot be moved even when I am doubting and certainly not feeling what I should. My God is unchanging and nothing I say or do alters His care for me. I am safe. My days were written when there were none of them. Danica is safe. Delaney is safe. Dan is safe. We are resting in the shadow of the Almighty God. No one can pluck us from His hand. Carson continues to write:

“We all have the choice. But only when someone takes the risk of faith can he or she begin to experience the best consequence and the best rationale I know for belief in God. That’s the privilege of a personal relationship with the Creator of the universe, who wants to offer His wisdom and guidance to help us deal with all the other risks we face in our dangerous world.”

We are all going to die. I’m more aware of the fragility of life, because I’m faced with inherently riskier situations. But my time here will not be cut short. I won’t be taken too soon. My purpose will be fulfilled.

I’m lucky.

I have Ehlers Danlos Syndrome, a genetic connective tissue disorder that affects every fiber of my body, mind and spirit, and I’ve had access to doctors and surgeons who are courageous enough to TAKE THE RISK to give me this precious life.

I don’t take a minute for granted.

Please pray for my family and I. This is something we did not expect to be facing. Now that I’m in Tucson the difficulty of travel to the east coast doctors who treat me is much more expensive and difficult. I am not privately insured. These were both huge calculated risks we took in moving here. Over the next few days I will be making a decision, and we will need your help. Please pray for the surgeons I appreciate and care for so deeply. Please pray for the other patients making hard choices too. Thank you. Our Hope remains.

(Dan and I were able to grab sweet moments of live music in Tuscon last Wednesday and see the band Need to Breathe in concert. Much of their music is part of the soundtrack of our lives, but this song made me cry. If God is on our side who can be against us?)

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Fellowship of The Broken

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“Never be afraid of broken things–because Christ can redeem anything.”-Ann Voskamp, The Broken Way

I should have stayed home. My very flared and untreated Autoimmune encephalitis/PANS symptoms have kept me from restorative sleep. My face twitching. My shoulders dislocating. My brain swelling. My heart hurting. My neck screaming.

I pushed hard to make it to my first memoir class at The University of Arizona Poetry Center last night. Five Monday nights I’ve committed to learning about this thing I know I’m called to do. I want to do it well. Writing comes instinctively, but writing well comes from practice and a community of others who know more than I do. I drove to downtown Tucson and sat around a cluster of tables for over two hours. Reading aloud. Writing exercises. Sharing and discussing. I tried not to strain my neck, but it’s rude to keep your back to someone continually or to not look at them when they are speaking. I wish I could wear a sign. People so kindly ask, “Do you have a stiff neck?…Were you in a car accident?…So, you can’t move it at all?” It’s exhausting. The class was everything I’d hoped and more. I drove myself home in the dark. This is big, brave stuff. A year ago I couldn’t have imagined trying to do anything this independent and long term. I was excited and grateful. But I was hurting.

This morning was week three of a Tuesday morning Bible Study at the church we are attending. I missed last week, because I was in bed all day. It was one of a hand full of days since we moved here I could not move through the pain. I wanted to go so badly. I’d done my reading. I missed the ladies I met at week one. I rose early, got dressed and did my hair. If you know about the spoon theory you understand this getting ready to go somewhere can be more exhausting than the going, especially on bad days. I saw my family off to school and work. I looked in the full length mirror. In my head I heard, “But you don’t look sick.”

It’s hard when no one knows your story. I don’t want to lead with the pain. The version I’ve been telling is a quick synopsis. I was very sick for a long time. I had four shunt surgeries in 2018. The last one was August 12th, and we picked up and moved here just two weeks later. It sounds crazy because it is. People can’t believe we came here without Dan having a job. They can’t believe I took the risk of losing insurance and access to treatment. They can’t believe much of the story, and I’m giving them the cliff notes and leaving out the miracle provision that told us to go. A variation of this conversation happens every time I meet someone. I want to leave the hard parts out and shine it all up. It’s grace. Monica, don’t forget to tell them it’s ALL grace!

I’d made it almost all the way through our study when the dear leader looked at me. There were already tears balancing on my eyelids threatening to fall. I was holding my left shoulder in place with the opposite arm. She noted I’d been quiet and asked if I wanted to share. Others had been talking about finding time to pause and be with God. Most communicated the difficulty of juggling all they had to do with the desire to meet Him regularly. I began to cry. I said something silly like, “I want to be the one who brings the cookies.” I want to be doing and serving. I want to host another Option EDS-the retreat this May in the Outer Banks. I want to help others find the most well life by building a non-profit here that will support a respite house. I’ve had a decade of quiet time. Hours and hours of time alone with God in prayer and in His word. I want to finally tip the scales of all the love my family and I have received and somehow become the abundance for others. What if I could somehow earn all that love on the backend. Then your scandalous support wouldn’t have been wasted. Yes, God, that’s what I want to do.

I chose the class because it is a study through Ann Voskamp’s The Broken Way. I read this book when it released in November, 2016 at the bedside of my Danica Jean at Johns Hopkins. I’d had major fusion just five weeks before her scary brain and spine surgery. I was utterly broken and terrified. My copy is marked up and cried over. I pulled it out of a box in the garage for this study. My brokenness is different today. I’m bleeding from a wound I didn’t even know was there. In this starting over life of more well, and I have been much more well, a strange desire is eeking out. These people don’t know how busted I am. They don’t know I’ve lost everything. They don’t know… I’ve said it over and over. I want the story to be something new. If I put on pretty shoes and some lipstick and smile while saying how good God is all the time maybe I won’t have to be known for my suffering.

Sitting there crying in front of all those beautiful women I heard Ann’s voice,

“I hadn’t known that full cruciformity looked like this. To give someone your broken heart means breaking pride, breaking lies, breaking fear. There’s no communion unless someone breaks their ego. All along, had I only been scratching the surface of what it meant to be broken and given? How had I not lived like the brokenness itself is a gift?

Why not embrace the life work of embracing suffering, embracing brokenness? Why avoid the gift of more God, more vulnerability, more intimacy, more communion–the gifts brokenheartedness offers? Why had I found that terrifying to incarnate? Suffering is a call for presence; it’s a call for us to be present–not only to the brokenness in the world, but to the brokenness in our own soul, and to risk trusting others with our wounds. I think that is what’s terrified me–trusting others with my wounds…”

For ten years I blogged with open wounds. I bled right here on the screen, and you met me, sat in my brokenness and loved me like Jesus. My gifts in the gauntlet were more God, more vulnerability, more intimacy and more communion. I never felt alone. And then I stopped. In my pride I wanted to move the trajectory of my story to something new.

Those ladies joined hands and prayed over me. I haven’t had in the flesh prayer like that since the circling of prayer at The High Calling retreat in 2014. Everyone of them is broken too. I’ve just begun to hear their stories. The broken body of Christ. The visible invisible flesh and bone of God’s redeeming love.

“The fellowship of the broken believe that suffering is a gift He entrusts to us and He can be trusted to make this suffering into a gift.”

Gauntlet with a gift.
Always a gift.
Always grace.

I’m sitting in the dark now. I’m exhausted, but my brain is on fire, and I know rest will not come easy.

In my efforts to resurrect my book manuscript I’ve come to a clarity that changes everything.

My story only matters to the extent it is part of His story.
My brokenness. My pain. My loss. My healing. My hope.
It’s by Him, for Him, through Him or not at all.

I will crawl into bed with the hearts of all the hurting I know and love and the faces of my new family. I will pray. This is my endless and proper work. Be still, my child. Lean hard. This broken way is the only way.

“Never be afraid of broken things–because Christ can redeem anything.”

“The LORD is close to the brokenhearted and saves those who are crushed in spirit.”-Psalm 34:18

Once again the “Image of God” is on repeat. Christa Wells came to the EDS retreat in May for a private concert for the girls and their moms. I helped her make the set list, and I asked her to end with this song.

The fellowship of love is the new story.
Suffering is the footnote.
The miracle happens in the breaking.
My Hope remains.

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In Returning and Rest

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Sunset

“Quietness is a receptive emptiness. Only the meek will inherit the earth because only the meek have room within themselves to receive such a wide and wild inheritance.”–Christie Purifoy, Roots and Sky: A Journey Home in Four Seasons

“In returning and rest you shall be saved; in quietness and trust shall be your strength.”–Isaiah 30:15

This was my favorite verse as a child. I didn’t fully understand the context of Isaiah 30, but something in me knew even then about how easily my heart and life could slip away from my deepest need and purpose. The clamor of the world so easily fills up sacred space reserved for relationship with God. “The bread of adversity and the water of affliction” get noisy too.

It’s been one hundred and forty-one days since I’ve published anything here. I had the fourth shunt surgery this year, and God quickly and decidedly picked up our family and carried us to Arizona. The time away from this blinking cursor has been a season of necessary retreat. I’ve leaned into the Lord who waits to be gracious to us and exalts Himself to show mercy to us. Since late August I’ve stepped outside my tent to breathtaking desert and mountain vistas. The sun rises over the Catalinas and sets behind the Tortolitas. This is my manna. This is my promised land. This is my home.

One of only five posts in 2018 was in early February. I was finally regaining my memory from the November spinal surgery and Aslan was on the move. I never could have imagined just how powerful the hope I felt would be worked out in the months to come.

There have been dark days of doubt in this Gauntlet, but deep down I’ve always known every single detail of our narrative was more about Him than us. We’ve pleaded with God for a break in the suffering. We’ve begged for a time of peace and restoration and an end to this story. We’ve ached for something new.

I’m telling you now. Something is ending. God is doing something new.

In Dan Allender’s book To Be Told: God Invites You to Coauthor Your Future he writes about how our culture fails to celebrate endings. He talks about the literary idea of denouement.

“Denouement is an ending that serves as a prelude for a new beginning; there is always a next turn in the road. A new story begins the moment an old one ends. But a denouement is a respite that calls us to stop the journey for a brief interlude–to eat, drink, sing, dance, and tell our story to others…One of our greatest failures in our busy, driven culture is that we don’t celebrate the temporary untying of a complex narrative…We don’t allow endings to be noted, let alone celebrated. Therefore we never let denouement to invigorate the upward movement of a new story. And we will only love our story to the degree that we see the glory that seeps through our most significant shattering. To see that glory, we must enter into and read our tragedies with confidence they will end better than we ever could imagine.”

There is a new story. The words are hard fought. My brain is still broken in many ways, but I hear the call to return and remember. He’s binding up the brokenness and healing the wounds. It’s a “wide and wild inheritance.” Thank you for your great love and patience in this time of denouement. Glory is seeping through every suffering. I’d rather go blind than look away.

(Take a few minutes to rest right now. Be still and know. My childhood friend, John Albert Thomas, is a solo piano composer. His songs are the peaceful background of many of my days.)

 

 

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Surgery Again. The Complicated and Necessary Right to Suffer

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SafetyPins
“My feelings of pain and guilt for failing not to suffer became more unbearable. The physical pain seemed almost easy in comparison.”–Lucy Grealy, Autobiography of a Face

I’m sitting at chemo today. It hurts.

My spinal cord is re-tethered. It hurts.

I want the pain and guilt of being sick to stop even more than the actual physical suffering.

There is much to share about my trip to DC. Some hard. Some pure Grace.

I need spinal surgery again. It’s scheduled for Wednesday, November 8th. It will require 3-4 days in the hospital and 7-10 days in the area after discharge before I’m released in a post op appointment. It seems as impossible now as the first time. I have to allow myself to sit here for a minute and acknowledge how this feels to me, because it’s happening to me. I won’t stay in this place. I will move forward to all the planning and logistics and finances and caring for other’s emotions surrounding it. For now I will endure this chemo and the awful ache that follows. I will crawl into bed and cry until the tears run dry. I will wrestle with God through the night. Tomorrow I will rise and begin to do what must be done. He will make a way. I will write about it. I will tell about it. He will get the glory, but today I believe He understands my complicated and necessary right to suffer.

“As a father has compassion on his children, so the Lord has compassion on those who fear Him; for He knows how we are formed, He remembers that we are dust.”–Psalm 103:13-14

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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.

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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.)

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Kingdom Currency. Where Life is Found

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FamilyCorolla

“We didn’t need our own miracle to believe that God can perform miracles. His word already speaks this truth. We needed His perspective, sown into our inner understanding of Him, to be able not just to witness but to receive the real miracle He was working. Again, it was looking at Him, long and rightly, that was performing miracles. Adoration makes walking with God more than just reacting to a series of externals. Adoration calls the circumstances, no matter how high or low, into proper submission in our hearts. Adoration roots us in a reality that no amount of pain and no amount of blessing can shake. Adoration steadies us. It repatterns our thinking. It centers our lives around a God-man instead of forever trying to make sense of the God-man through the lenses of our circumstances. Adoration aligns us under Him. This is the place where life is found.–Sara Hagerty, Every Bitter Thing is Sweet: Tasting the Goodness of God In All Things

I am sitting in my bed with pillows propped around my braced neck and crumbling spine. I’m in pain. I’m in the kind of pain that makes me bite the insides of my cheeks raw and cry without warning. I’ve done basic hygiene and made my bed. I wrote a note to a friend who is struggling. I answered one text. I drove Delaney to Sable Creek golf course, there and back home, twice today. Driving is the hardest thing I do. I’m done. That’s all I have to give. It’s 4 pm. In my body’s demand to completely stop my mind begins to race.

The tree company arrived next door early this morning. They are still working. The sound of the vibrating machines is almost more than I can bear. Every synapse is firing. I’m so overstimulated I might go mad. It’s the third time our neighbors have had tree work done this summer. Both our homes back to woods. We have one towering dead tree on the hill behind our house. Dangerous branches have fallen during recent storms. It threatens us, but we can’t imagine a time we will have the money it would take to have it removed. We haven’t been sitting on our deck this summer because we can’t bear to look at the dead tree or the bank leading to it without mulch for the second year in a row. We haven’t grilled once because the propane tank is empty, and we don’t allocate the money to refill it. The ‘replace filter’ light is blinking on the thermostat. I’ve added it to a list of escalated things I need to rearrange the budget for. Delaney’s bedroom window is taped shut and literally falling out of the front of the house. We planned to replace it this spring, but there was my shunt surgery, and it never happened. We should not live in a home we cannot maintain. This little ranch rescued me. It saved our family in a hundred ways after living in my parent’s basement. It was a miracle, but it was a stretch. Five years later we are worn thin.

I was hospitalized two weeks ago. After finding out I was in serious adrenal crisis, most likely since my April shunt revision, I began taking a medication I’d used before after surgeries for Addison type symptoms. For some reason it began causing horrific peripheral neuropathy in my legs. I suffered in writhing pain for days until I surrendered to the fact I needed medical attention. The sixteen hours in the emergency room and days admitted there were traumatic. They are always traumatic. Only my EDS family can fully understand how hard we have to fight and how vigilant we have to be with every interaction. With all due respect to the wonderful men and women who give care in these settings, it is a brutal exchange for those of us with a rare disorder, a rap sheet of surgeries and accompanying conditions and a scary list of medications. I was released in less pain but completely broken. I am waiting for an endocrinology appointment while barely dragging my body around.

In counseling I tried to explain this never ending life of ‘fight or flight.’ The financial part of this is as real as the physical. We cannot catch our breath or ‘rest and digest.’ We have reached a point where we must take stock of what we’ve lost, what is owed and seriously consider if this survival mode is sustainable any longer. If it’s not, where do we go?  What do we do?

I quit writing because my old, hand-me-down laptop crashed and died. A new one showed up on my doorstep just as I was needing to create a website for an exciting dream coming true. (I can’t wait to tell you all about it!) Delaney needed golf clubs to begin practice for school and a family we hardly know from Cleveland drove some down to her. Enough. My parents took Danica to shop for her school supplies. A friend texted me to let me know she mailed a gift card to help with some of the other things the girls need. Enough.  At Rolo’s first vet visit last week we found out he has a few health issues. I cried and hyperventilated as she went down the list of medication he needs. Checking out, I had twenty dollars left over after paying the staggering amount we owed. Dan was getting paid the next morning. Enough. A gofundme donation came through as a medical bill escalated in collections, and I could pay it. Enough.   

Our God has been ever faithful. He’s always provided enough. But what if His ‘Dayenu’ is a different currency? Would I recognize this kind of wealth? Would I call it abundance? What if enough is only ever found in knowing and adoring Him?

We had a family ‘come to Jesus’ meeting last weekend. We looked our girls in the eyes and talked to them as straight as we always have. We tempered the reminder of our reality with the goodness of God through the love of so many. We assured them we would be okay, but let them know we are at a crossroads that requires input from each one of us and a lot of prayer. Somehow we came to the question about choosing. If I could choose a fresh slate…all our debts forgiven…a new start for my family or complete healing for myself which would I pick. I answered too quickly. I would choose to set them free. I would take the pressure off Dan. I would have a college savings account for Delaney. I would hear the phone ring and check the mailbox without fear and panic. Even as I thought it I realized how flawed the question was. Either answer would be wrong, because this place of perceived lack is exactly where God wants each of us to be. He is working a thousand things we cannot see in my suffering and in our need. These are fashioned for Dan, Laney, Danica and I in a perfect way to train our hearts to know Him and depend on Him alone. He has been glorified in my pain and in the pouring out of provision over and over again. We are rich in Kingdom currency.

I’ve been living in the Psalms this year, and they have slowly retrained the way I see and know God’s character. I visit them first thing when I rise. Dan makes me coffee. I sit in my nest chair and open my Bible to a book of songs and poetry about God. Tim Keller’s little gem of a book, The Songs of Jesus, has guided me. Several days ago I was in Psalm 86:1-7:

“Hear me, LORD, and answer me, for I am poor and needy. Guard my life, for I am faithful to you; save your servant who trusts in you. You are my God; have mercy on me, LORD, for I call to you all day long. Bring joy to your servant, LORD, for I put my trust in you. You, LORD, are forgiving and good, abounding in love to all who call to you. Hear my prayer, LORD; listen to my cry for mercy. When I am in distress, I call to you, because you answer me.”

Tim ends the devotional with this prayer:

Lord, I am constantly asking You to give me Your strength, to change me and heal me. But nothing is more empowering and life transforming than simply adoring You. Inject the truth of Your wisdom, love, holiness and sovereignty down deep in my heart until it catches fire there and makes me new. Amen.

I’m grinding my teeth as I type. I have to focus to relax my face and my mouth. My neck literally twitches in spasms. It’s easy to stay fixated here, because my pain screams at me. This is when I call out in distress and believe He will answer me, because I know who He is. He is forgiving and good and abounding in love. And He is enough. His Grace is enough. And even this is Grace.  

Kingdom currency.

This is where life is found.  

(Will you please pray for us. We feel pressed to make some kind of change. We need wisdom to know each next thing. Please pray for my health. I have chemo next Tuesday, and I will see the new endocrinologist in several weeks. Until then I have to keep functioning. Please pray for Danica. Her scan and neurosurgeon appointment in Baltimore are on the 15th. Her neck has been hurting her. I rubbed it last night as I tucked her in and felt the all too familiar lumps of knotted muscle around her hardware. She is so hopeful for most of her restrictions to be lifted before school begins. Something in my gut says this is too soon. It will break her heart. Please pray for Dan. I see him crumbling in a new way. We have always stayed close in our hard, but this feels different, and we are both struggling to connect. Please pray for Delaney. Oh how I wish I could make this different for her somehow. Her compassion and empathy has grown. We talked candidly about her personal faith yesterday, and it reminded me again of all the soul business God is doing in what looks like a hot mess from the outside. I have to trust Him with the most precious currency, the hearts and lives of my husband and girls. Our Hope remains.)

Photo by Audra at 12th Street Portraits

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