Archive of ‘Book Reviews’ category

Shame and Gratitude. A Dan Post

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Note to Dan
“I was usually filled with a sense of something like shame until I’d remember that wonderful line of Blake’s-that we are here to endure the beams of love-and I would take a long deep breath and force these words out of my strangulated throat: ‘Thank you.'”-Anne Lamott

Over the past thirteen years of unrelenting hard I have experienced a roller coaster of emotions, but the two I feel the majority of the time are polar opposites.

In-between acute shame and astonished gratefulness lies Grace.

The word ‘numb’ is described as being “deprived of feeling or responsiveness.” After experiencing three brain and spine surgeries for Danica, dozens upon dozens of surgeries and medical procedures for my wife, and now a brain surgery for Delaney, numbness is a necessary survival tactic I must employ to get through all I’m asked to do. My life is work that will never provide enough for my wife and daughters. My life is loving through service that will never overcome their suffering. My effort will never be enough. I’m ashamed. I stuff it deep down inside to carry on with the next thing.

K.J. Ramsey writes in her book ‘This Too Shall Last. Finding Grace When Suffering Lingers’:

Deep down, our greatest fear is that if we express how broken and scared we really feel, we will sink into complete darkness. We fear that expressing the depth of our discouragement will separate us from God. This is the knife edge of shame in suffering, the Enemy’s favorite weapon in defeating us, depressing us, and holding us back from the love we were created to receive.

Gratitude for provision of this home is something I breathe. Access to the best surgeon and healing after Delaney’s Chiari decompression, her scholarship to ASU, Danica’s scholarship to Pusch Ridge Christian Academy, a job that’s held through the pandemic and continues to provide insurance for the girls, my wife’s working shunt and my own health are gifts. I consider them more than I worry about what is next, because God has been so faithful. There is no good thing I take for granted.

My wife mostly handles all the bills. Along with being sick she considers this responsibility of access to care her full time job. I see the way she opens the mail and adds statements to three stacks of papers on her desk neatly organized with binder clips. She has a sticky note on each stack with a total due: Monica’s medical bills, Delaney’s medical bills, Danica’s medical bills and bills in collections. She’s a master at paying what she can to keep access to their doctors and surgeons, making payment arrangements with others and letting some go to collections. The sheer number of specialists, hospitals, imaging centers and surgical costs broken down make me sick to my stomach. Somehow she has managed this weight since the months of hospitalization and Danica’s birth and NICU stay in 2007. I’ve been told we should never feel guilty about this, we did nothing wrong to end up here and no family, however wealthy, would be able to crawl out from under this never ending debt. Still I’m ashamed. I stuff it deep down inside to carry on with the next thing. Monica needs another major spine surgery. She needs to see several other doctors about serious mast cell reactions and her bladder. She’s been suffering with a mouth wound for ten months. She’s needed to spend days in bed lately from debilitating headaches. She’s stopped seeking help for now because of a laser focus on the girl’s needs and her unwillingness to create more debt or cry out for help. This breaks my heart.

About a month ago my trusty old Honda Accord needed two new tires, brakes and some other work. The total was $989.03. Our delicately balanced survival budget always necessitates these kinds of unexpected expenses go on a credit card. That same week a letter arrived addressed to me from a man I’ve never met. It was a check for $1,000 and a note that read: “Dan, Here is something to help you take care of your precious girls. You are a good man Dan Snyder!” This love, man to man, somehow took away the crippling shame of receiving. Our life is full of stories like this one. Monica has needed to stay quiet about mounting financial stress since Delaney’s surgery. I’ve always seen God providing when she humbly asked for help on Facebook or GoFundMe. This particular and personal provision was God’s reassurance we are not alone. He will continue to meet every need even when we are too tired or embarrassed to ask. During that same time we were waiting to get important genetic testing done for Danica based on new symptoms and her recent imaging. The box and collection kit from the company was sitting on Monica’s desk for weeks because we needed to pay before we sent the sample. Once again a check arrived in the mail. Just enough.

This consistent display of God’s faithfulness awakens my dull senses and gives me hope.

My life is a ‘Thank you’ greater than shame.
His Grace is always greater.

“And my God will meet all your needs according to the riches of his glory in Christ Jesus. To our God and Father be glory for ever and ever. Amen.” Philippians 4:19-20

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Dear Delaney…On Chiari and Seeing and Staying with Pain

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LaneyLemon“Finding grace in suffering is less about cognitively assenting to the truth of God’s goodness than about letting our souls and bodies be seen. If you are a sufferer, be seen. If you encounter someone’s suffering, tuck your words of God’s goodness away until you’ve first listened with the eyes of your heart determined not to look away from pain.”-K.J. Ramsey, This Too Shall Last: Finding Grace When Suffering Lingers

My darling girl,

I’ve been writing in a journal to you since before you were born. Many of the entries are full of wisdom I’ve collected through the years and want to make sure I share with you. Most of them begin with the word, “On…”

When you were almost three years old we enrolled you at a Montessori school in Akron, Ohio. I would drop you there on my way to work. It was the first time I’d left you with someone who wasn’t family. Just a few weeks into our new routine I received a phone call from the school. “There’s been an accident. Delaney fell and cut her head. We need you to come right away.” It was a twenty minute drive from my office to the school. You tripped while running and the corner of a cabinet split your forehead wide open. When I rushed into the school I gasped at all the blood. A pediatrician mom told me the head is very vascular and not to worry but to take you to the children’s hospital emergency room right away. Your dad met us at the school and drove us there. I sat in the back seat holding a cold cloth to your wound and tried to keep breathing. When the time came for them to hold you down and place thirteen stitches in your perfect brow I couldn’t watch. I couldn’t hold your hand. I couldn’t tell you it was going to be okay. I began to black out and a nurse took me out of the room to sit on the cold floor with my head between my knees. I sobbed while you screamed. Your dad stayed with you.

Next Saturday you and I will fly to New York alone. You have Chiari and need a brain decompression. But it’s not that “simple.” We aren’t sure if your Chiari is being caused by something else like a leak of cerebral spinal fluid. Sixteen days from now you will be rolled away from me and have something called an ICP bolt placed. It will measure your intracranial pressure for twenty-four hours. Eighteen days from now you will have brain surgery.

One of my biggest fears is that you will wake up and look at me in the terror of post op pain and ask me why I didn’t tell you how hard it is.

I don’t want to take for granted you understand what will happen just because your little sister has been cut three times and we are just calling my surgeries “countless” now. I know the trauma of watching us climb into the car or on a plane and leave you behind all these years has settled into a hum of reality. I also know you have been protected from seeing the worst because we always needed specialized care so far away. By the time we made it home we were hurting but healing. You didn’t hear the screams when our IVs blew and no one could get a new vein. You didn’t see the hours without pain meds while we suffered and waited for IV therapy. You didn’t see the delicate dance with each new shift nurse and resident doctor fighting for the best care while not tipping the scales to crazy. You didn’t experience the dreaded day two, the day after the triumphant Facebook posts about being a warrior, the day when all the anesthesia wears off and we wondered how in the world this hurt could be better than the pain that brought us there. You didn’t see the endless parade of helpers that took our vitals and checked the equipment and cleaned the room and brought the meal tray and took it away along with the nutritionist and pain management doctor and physical and occupational therapist and social worker. You didn’t smell the antiseptic hospital odor that oozed from our pores. You didn’t taste the flush of the IV over and over or feel the tearing of the tape off skin while checking wounds. You didn’t see the desperate need to be released from the hospital just to be anywhere else just so we could finally rest.

Today I explained the process of hospital admission and getting ready. I talked about the questions you will answer over and over again. I discussed the awful moment when they will take you away from me and you will be alone in a freezing cold room with masked faces and cold hands moving you to the operating room table while placing sticky leads all over your chest. My body has become just a container for my soul but you are seventeen and no one has ever touched you like this. You are most worried about the catheter and knowing someone will be in your private places after you are put to sleep. It may be the hardest part. They will ask you your name and birth date one more time and do you have any allergies and what surgery you are there for. You will be scared and so ready for the mask and the gentle voice asking you to take a deep breath and another…

I will fight like hell to be there when you wake up. Because you are a minor and we will be at a children’s hospital they tell me I can. You will be confused and groggy. Your throat will hurt from the intubation and your mouth will be so dry. They will say your name and ask you if you are in any pain. And you will begin to grapple with what’s just happened. You will want to know how the surgery went, how large the incision is and when we can go home. From the moment you wake up you will begin thinking about your own bed, and Dad and Danica and Twix and every hard thing after waking up will be the next hard thing you do to make it there.

You rushed me through all this and began to cry. A Delaney cry. Your little nose quivered like a bunny and a tear slipped down your cheek as you quickly wiped it away and said, “It will be okay, right?.” You reminded me you are in pain every day and this is just something you have to do to move on to the life you want. You asked me while you were telling me. And I wanted to reassure you, but I’m afraid too. I’m most afraid of lying to you about any of it, because that’s not what we do. You and I have always been impeccable with our words to one another, one of the four agreements I raised you on.

It was easier for me to have faith with little Danica. I’d been fighting for her since I first heard her fetal heart beat. Laney, I always believed you were meant to fly away from all this chronic illness and suffering. You were to leave with a hard scrabble story of a character building childhood resting on the foundation of God’s faithfulness and the multitudes of kindness that were miracle to our family. I said a thousand times I was holding you loosely. It turns out I’m clutching you girl. But I know every impossibly hard thing I’ve lived and learned about Chiari has brought me to be your mother right now. I have seen the goodness of God in the land of the living. I’ve seen miracles. And I’m pleading with God for one now.

Laney, I promise you I will not look away even once during these next hard weeks and months. I won’t faint and be ushered away. I will not tell you how good God is to clean up the edges of the suffering. I will write this story exactly as it unfolds with the vulnerability of being seen. I will stay. And God will be there too. Nothing about Him will change. He will watch over us and be faithful and work out His great love for us through the pain.

Please Jesus. In the chaos of pandemic and the necessary and holy work of fighting for justice and change please see us too, a broken mother and a hurting daughter who will be far from home in a strange city fighting demons. Please be with Dan and Danica as they are left here. Comfort them. Protect their minds and hearts. Thank you for the community of love surrounding us as we move forward. Please continue to provide our needs and access to care through the generous hearts of others giving and sharing so many will pray. On Chiari, I’m begging you to lead us in the perfect plan for surgery and bring healing in the multitude of ways we need to make this a success. Help us show that honest suffering will always point to You and inspire hope. Our hope remains. We know this too is Grace. Amen.

(Friends, I’m humbly asking you to please add Delaney’s surgery dates to your calendar. They are Wednesday, June 24th and Friday, June 26th at Columbia-NewYork-Presbyterian, The Morgan Stanley Children’s Hospital. Please share her story and ask your friends and church to pray. Use the hashtag #teamdelaneyjayne. If you want to follow her story and receive updates while we are in New York please follow me on Instagram @MonicaKayeSnyder or through Delaney’s gofundme page at https://www.gofundme.com/f/help-delaney-jayne-overcome-chiari

Thank you for giving and making a way. Thank you for praying when we are weary and cannot find the words. Thank you for encouraging. This is such an incredibly hard and lonely place for all of us. We need our people to see us and stay.

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Home. Returning and Remembering

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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.

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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

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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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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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“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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“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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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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