Archive of ‘Team Danica’ category

Dear Dan. On Father’s Day

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Father's Day

Dear Dan,

I hate I wasn’t there yesterday to celebrate you. Delaney and I are in New York for surgery and you are in Arizona with Danica and Twix. We’ve been apart for so many ‘special’ days I quit trying to quantify the loss, but it still hurts. As I read other’s facebook posts about their husbands and fathers and even wrote something to my own dad I realized painting your love with a broad stroke and a few words wouldn’t do. I refuse to romanticize the way you care for us. This kind of long faithfulness is hard and messy work. Last night I searched all the blog entries you wrote on the old Team Danica site and ugly cried my way through them. Your unique voice in all this suffering is necessary and true.

Less than a month ago, on the night of Delaney’s ‘actual’ graduation, you picked up tacos for dinner on your way home from work. Delaney was hurting that day and made the decision she couldn’t physically go to the graduation watch party planned. We all felt a strange grief choking us. When you arrived the girls were grabbing paper plates and napkins and getting glasses for drinks and there was a general sense of rushing to eat. Danica sat on the end of the bench at the table and Delaney pulled out the other end quickly. Danica fell backwards off the bench and hit her head. You lost it. You didn’t curse or yell. Instead, in a pained sarcastic way, you clapped loudly. The incident triggered something in all of us and dinner was over before it began. After we were sure Danica was physically okay Delaney ran to her room and sobbed her heart out. You retreated to the hammock in the back yard feeling awful. You explained how almost every minute of every day you are holding your breath waiting for the accident that breaks Danica’s hardware and fusion again. Most of the time you are able to keep this feeling out of reach but when something like the fall happens your heart is split open for us all to see. I carry this fear too, but I shine it up with faith to make it more bearable. There is something about Delaney’s Chiari diagnosis that’s exposed us in new ways.

The mood stabilizer I take keeps me steady most of the time. Once in awhile I open the flood gates with you. You let me say the same things over and over. I tell you how I don’t think I can embody this pain one more day or continue to watch our girls suffer. You see me and you hear me, and it helps me go on. I wipe my tears, blow my nose and make a plan for the next impossible thing. I go over the appointments, the insurance battles, the money that isn’t there and the bills I’m prioritizing. I talk about the girls and their emotional needs on top of the physical stuff. This is my way of trying to maintain some control in a life that is almost nothing like we thought we wanted it to be.

Somewhere in the midst of our mess, you have this other world to manage too. You leave the house at 4:30 am every day to work. I don’t think you’ve taken a true sick day in over a decade. You have never complained. Our family has always come first and any personal ambition or desire for success has taken a back seat to the need for steady insurance coverage and a schedule that allows you to be there in the afternoons and evening when my spoons are gone. Moving to Arizona to start over with a company that has no understanding of our complicated medical journey has made it even more difficult.

No one really knows the Dan I first met and fell in love with. The Inner Circle award winner. Your life with the trips and recognition. The bonuses and stability. The social network. The friends. Golf. Your luxury car. Your boat. Your motorcycle. Things that made a life outside of what I was to you. I have seen you sacrifice everything down to the most humbling day when I gave you my beautiful diamond solitaire in the red and gold box to sell for bills. The stone you studied and chose. The perfect carat with perfect color and clarity you had worked so hard to pay for and gave me on the beach in Kauai. You brought me the setting back empty, and we both cried. Nothing was sacred in our desperate attempt to stay afloat.

I have never seen or heard or read in a fairy tale or real life about a man who loves like you do. A chronically ill woman once compared her steady husband with you. She said something that shocked me. She said, “Most men would have left women like us.” Here’s the thing. I have never once felt like you would leave me. Your love is that sure. You are a mirror of God’s love. When I can do absolutely nothing to be your help you still cherish me. When the only physical connection we can make is less than a hug because of my pain you sniff my neck deeply and sigh, not out of frustration but as if you are still intoxicated with something only you know resides in this shell. You treat me like a soul. You respect me. You forgive me over and over again for the hard edge I carry most of the time. You are so fierce in your commitment it frightens me, because I still can’t believe it’s possible.

I want to do something huge for you. I want to give you a break. I want to spend a week with just you and feel even a fraction better than I do now so I can give you all my attention. I want you to know friends again and have something to say to anyone besides how hard it is all the time over here. I want you to experience recreation or pleasure without a single shadow overhead. I want to sit in the sun with both our faces burning and feel the exact same release at the exact same time and say together, “This is good.” I want you to feel the escape you loved about riding your motorcycle alone on a spring day in Maryland down an open road lined with flowering pear trees. I want to have a meal with you and not think about what it costs or what in it might make me sick or how long we have before I crash. I want to taste every single ingredient and talk about them and sip the notes in our wine like a symphony and tell the truth in the clear way we used to on special nights alone. I want to be healthy for just one more night so I can make love to you the way I used to, when our bodies and spirits were so melded it was as if you were wearing my skin and I was wearing yours. I want to laugh out loud and not have it catch in my throat like a knife. You always make me laugh. I love how you make me laugh.

So much of your love is about Delaney and Danica too. I don’t know any other man who works all day and comes home to work just as hard. You don’t sit down until you have a load of laundry in and the dishwasher emptied and coffee ready for the next morning. You run the vacuum and ask me what else you could possibly do to make something easier or less painful for me. On nights I know you are starving, you will eat a bowl of cereal without complaining because I just couldn’t make dinner and nights I do cook you tell me how much you appreciate it. “Good job, Monki.” And in those words you are saying so much more because you know how much it hurt to stand and stir and lift and open and shut to make a simple meal. You step in for carpool and shopping and every endless outing moms have to make when I can’t. When I try to go along you have my back and see the look in my face when I’m done. You protect me even from our children on my hardest days. This hurts us both, and I don’t know any other man who is this brave.

I pray for you. I ask God to give you the strength you need to keep doing this impossible thing you have somehow made possible for us. I beg Him to bring you rest or relief or joy of any kind. I thank Him for you so many times every day and every night.

I know we quit looking for the reasons all this happened to us. I know we stopped believing it was punishment for something we did. I know we quit asking almost all the whys and have learned together to take it minute by minute, hour by hour as it comes. I just have to say it over and over. There is no one else who could have stood in the stormy waves this long and not turned and swam to save themselves. You were made for me. You were made to love Delaney and Danica. Every part of your life until our life began made you ready to be the man you are.

Thank you.
Two silly words.

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A New Nest. A Longing Fulfilled

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“Hope deferred makes the heart sick, but a longing fulfilled is a tree of life.”-Proverbs 13:12

My last post, exactly four weeks ago, spoke about how I drove to a little house that was for sale a few miles north of here. They’d just dropped the price, and it was maybe something we could afford. I cried and I prayed. I asked God to make a way. I begged Him to gently scoop our family up and set us down somewhere we could stay for awhile and even put down roots.

Later that evening my parents and Dan and I toured the home with our realtors. We knew. The six of us stood by the front door before leaving and my dad prayed. Nothing is too hard for our God. I don’t want to fill this space with the challenges we face buying a home. If you’ve read here or at Team Danica’s old blog you know our deep and abiding medical debt and the way we’ve lived off manna the past decade, manna often placed outside our tent from God through you. You may know the beautiful home we’ve rented here was literally a miracle gift of time and place to start over, something we never could have afforded to rent on our own. You may know that any house payment is a stretch because our need for access to specialized medical care and surgeries will not end and year after year the out of pocket costs are more than Dan makes. They just are.

It’s day 599 living here. I asked God for a year. He gave me so much more. He graciously let me settle into a rhythm of being fully alive. We’ve suffered gratitude and we’ve sucked the marrow out of every day. It has been ALL GRACE.

We closed on our new desert home yesterday and should receive our keys today. There is so much hope but also understandable grief, and we are letting ourselves sit in this messy emotional space. The grief of leaving a home where I’ve healed the most ever in my life is compounded by all the hard work and physical effort this move requires. And it’s all happening in a pandemic world. It’s all happening when my Delaney Jayne is losing everything we dreamed the end of her senior year would be while needing brain surgery. She’s needing brain surgery in a city with the most Covid-19 cases and deaths in the United States.

I received a message from an Ohio friend last week. She shared Psalm 84 with me. I read it in bed on my phone. I opened my Bible and read it with my coffee in my little nest corner, the only part of my home still intact. I carried my Bible outside and read it again while eating breakfast in the sun.

How lovely is your dwelling place,
Lord Almighty!
My soul yearns, even faints,
for the courts of the Lord;
my heart and my flesh cry out
for the living God.
Even the sparrow has found a home,
and the swallow a nest for herself,
where she may have her young—

a place near your altar,
Lord Almighty, my King and my God.
Blessed are those who dwell in your house;
they are ever praising you.

Blessed are those whose strength is in you,
whose hearts are set on pilgrimage.

As they pass through the Valley of Baka,
they make it a place of springs;
the autumn rains also cover it with pools.
They go from strength to strength,
till each appears before God in Zion.

Hear my prayer, Lord God Almighty;
listen to me, God of Jacob.
Look on our shield, O God;
look with favor on your anointed one.

Better is one day in your courts
than a thousand elsewhere;
I would rather be a doorkeeper in the house of my God
than dwell in the tents of the wicked.
For the Lord God is a sun and shield;
The Lord bestows favor and honor;
no good thing does he withhold
from those whose walk is blameless.

Lord Almighty,
blessed is the one who trusts in you.

Please rejoice with us as we move into our new nest, a deep longing fulfilled. Please pray for us. I heard from Delaney’s neurosurgeon this week. He still plans to do her surgeries on June 8th and 10th. Brain surgery is not elective. I cannot see my way from here to there. We need to raise money for her out of network deductible. How can we ask for help again, especially now? We need to find a safe way to NYC and a protected place to recover there after. We need to find a safe way home. Please pray for my own physical pain, the mouth issue that simply will not heal and my need for my chemo. It’s become more clear Delaney and I will be doing the New York trip, surgery and recovery there alone. My body and spirit will be pushed beyond their limits. I will need strength and endurance only God can give.

We look to God’s faithfulness and know He will make a way.

Our new nest is another stone in our Ebenezer.
Ebenezer

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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?

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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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For Those Paying Attention. Thank You

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Paying Attention
“Attention is the rarest and purest form of generosity.”-Simone Weil

It’s the quote I’ve been scratching on each new thank you note I’ve written since my latest brain shunt surgery not even three weeks ago.

I’m sitting on the back patio watching the desert sun sink westward through a hedge of sagebrush, a lime tree laden with bright green citrus and a large prickly pear. It’s mid November, and I am just now feeling the coolness of a fall night whisper against my bare skin. I will need a hoodie soon. It’s day 442 in Tucson, and I still catch my breath at the wonder of it all. I’d finally deleted North Canton, Ohio from the weather app on my phone, but I remember how quickly autumn turns to winter there. This morning a friend sent me a text saying it was in the fifties but will be snowing tonight and the low temperature in the teens. The blood in my heart froze, a kind of PTSD remembering how a pressure change like that could level me for days and how every year I wondered how I would hold on until I could fly away like a bird to this sun setting behind these mountains.

Even in this peace there is a cacophony of sounds begging me to listen. A coyote howling on the Catalina side of Oracle road. A family of quail making their way home for the night. A dog barking in the cul de sac across the big wash. A neighbor in the front whistling as he puts out the trash. Road noise as people make their way home from work. My faithful husband washing dishes just inside the screen door. And the softer sound the wind makes in the low lying plants and trees.

Each one begs attention.

My phone, often plugged in beside my bed on silent, is beside me now. My sister hit a deer this afternoon. I’m waiting to hear from her. A friend is very ill. I’m waiting for any kind of update. There is an inbox of emails full of mostly junk and some things I will need to address. I really should check before bed in case there’s something school related for the girls I need to know. There are Instagram and facebook apps on my homescreen. I’ve not checked them for hours, and I didn’t post today. They are the loudest, right? Shouting the never ending cry, “Pay attention to me.”

There’s the news. I try to avoid it. But it’s Veterans Day, and I should watch. I hope for a story of courage and kindness tonight. Monday night football begins early here. My Dan has so few things that relax him a little and bring him joy. It will be a good game. I should sit next to him and snuggle for awhile. He needs his wife’s attention. Danica is learning to crochet. She’s been out to ask me if I can help her order yarn and a different size hook on Amazon with birthday money. She needs my attention. Laney is in her room working on homework and art. She painted her Hydroflask brilliantly and now she has requests from her friends. Next November her room will be empty. I will not be able to knock on her door and lie on her bed for a few minutes just to talk. I will text her or call her or direct message her and hope she has a moment in her new college life to pay me a little attention.

Every day, every moment of the day, we are distracted, moving on quickly, our neuro pathways branching off in a hundred different ways. We watch short video clips, scroll ads, click to buy, forward a gif…QUICKLY, you have three seconds. If I’m not entertained or intrigued or appalled you’ve lost me. It’s why most of my brilliant writer friends quit blogging. The story never gets a true arc anymore. You’ve got to have a good picture and a staccato of words with an instant take away. Grab me. Give me something I can use NOW or I’ve got to scroll on. Maybe it’s why I’ve quit writing here too. What’s my word count now? No one will probably even make it this far in.

It’s almost dark. The birds are getting noisier. More coyotes have joined the chorus. The stars will be clear and bright soon. In Ohio the clouds are pressing down, but I will see Orion’s belt before I sleep.

Thank you friends.

Thank you for not looking away.
Thank you for praying.
Thank you for giving.
Thank you for giving again.
Thank you for sharing our story with someone new who met a different need.
Thank you for receiving from us knowing it’s a ripple of someone else’s love.
Thank you for trusting us to sit in your own fires.
Thank you for inviting us even when we can rarely show up.
Thank you for showing up because we can’t come to you.

Thank you for paying attention to the suffering and the dazzling Shekinah glory in our wounds.
This paying attention is rare and pure, and we are saved by it.
We will never stop thanking you.

I am healing slowly. The past few days I’ve not kept any food in my tummy. My stitches on my head and neck are raw. I’m not sleeping well or at all. But I’m so alive. I don’t have a headache. I’m born again like each time before when I was saved from the crushing pain. And you are part of this story over a decade old.

I read Shannan Martin’s ‘The Ministry of Ordinary Places’ for the fifth time this weekend. I pulled it out to find a marked quote for the book I’m writing about giving and receiving and all the kinds of currency we’ve lived and been loved by…more gift and less gauntlet. Once again I couldn’t put her story away. At the end of chapter seventeen, titled ‘The Discipleship of Sticking Around’, she writes:

Just as Jesus instructs us through parables, we lead by our stories. I want the search party story. The lighthouse story. The living-at-the-end-of-myself story, where I link arms with the ones I love, and we stand together, one foot jammed against the cross, the other on the cold, stone floor of the empty tomb. I want a story of beating heart interdependence with the saints around me, sharpening each other as we walk together through life, every day a bit closer to the heart of our Father.

I want to stay stuck in the story of God, shaping my last splinter of hope into a sturdy lifeboat, a bridge worn smooth by His goodness, a faith that’s warp proof.

This is long haul discipleship.
This is why we stay.

Thank you for staying friends.
Our Hope remains.

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Desert Rain. A Dan Post

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rainbow
If all of life were sunshine,
Our face would long to gain,
And feel once more upon it
The cooling splash of rain.
-Henry Jackson Vandyke

I was born in Kirkland, just outside of Seattle, WA. This fact alone is nothing special unless you consider my parents and siblings were all from Virginia. My childhood was spent playing from dawn to dusk in the city neighborhood of St. Charles, Missouri followed by my formative teen years in southern Maryland. My wife and I met in Northern Virginia where I owned my first home. Delaney was born in Rittman, Ohio and Danica was born in Rockville, Maryland five years later. “Glass half full” readers will appreciate how adventurous my life has been while “glass half empty” readers might look upon this never putting down real roots as a challenge. I tend to view the volume of liquid in my glass as what God has provided, nothing more and nothing less. But my soul aches against this simplistic truth.

Thanks to blessings beyond what words can describe, I live in Tucson now. My daughters attend a Christian school and my wife no longer suffers debilitating pressure headaches every day. Hours upon hours of mowing the yard, raking the leaves, shoveling snow or driving in inclement weather are of no concern here in the desert. I rise each morning with the light anxious to stare at the everchanging mountains as each peak slowly comes into focus while the sun travels across a pure blue sky. Desert tan ridges and valleys turn orange as the sun sets to sleep in the west. The firework finale is held each evening as the sun disappears exploding its prism of orange, pink and yellow rays of light far into the atmosphere. We step outside this borrowed home almost every night to marvel how He does it again and again. The photos we post online do not come close to conveying this experience in person. The many stars in the clear sky get brighter each hour. My soul is still searching.

I haven’t written here in a very long time, but if you read Team Danica you might remember I referenced my favorite book in the Bible as second Corinthians. Paul encourages the readers that God’s Grace is always sufficient, and His power is strengthened in weakness. My family and I’s hardships and faith struggles have been well documented by my wife. But my private weakness, something I rarely share, is in not trusting the Lord enough even after all I’ve seen Him accomplish. I feel like I have been left wandering in the desert for forty years fearing each day and what’s to come. Every morning my last words to my girls as I drop them off at school are, “BE SAFE, BE SAFE.” Energized by the Tucson climate and a true chance to be more well my wife is exploring more of her world, venturing off to the grocery store, a Bible study or the writing workshop she just began. When we sit and talk in the evening, I am always fearful she will tell me she’s twisted her neck or spine. I live just one breath away from her or Danica needing another surgery. When most men my age have achieved success in their career and may be thinking of retirement, I am still needing to update my job resume and plan for interviews. I’m faced with a feeling of shame and despair that I will never be able to fully provide for our complicated needs. When most families I know are secure in their home and saving memories, I am stressed about where we will live when our current miracle runs out. We have seven months left in this house. My soul is restless.

It’s been raining all day here in the desert on this Super Sunday. My wife has a headache though it’s a “Tucson headache” which means she can at least get out of bed, but her heart hurts where her shunt empties fluid. She is running mostly on adrenaline now. We will be driving almost two hours away for her first Arizona infusion on Wednesday. Her autoimmune encephalitis/PANDAS/PANS symptoms are worse every day. She’s gone too long between treatments. Medicare finally approved paying eighty percent of this very expensive drug. Driving far for health appointments is nothing new, but we feel the same dread every time. I plan to study the long six to eight hours during her drip for a new technical certification with hopes that I can find yet another job to support my family more adequately. Even if a new job just means being able to add primary insurance for Monica it will be better.

We read in the book of Isaiah this morning. In verse two of chapter forty-nine he says, “…in the shadow of His hand hath He hid me, and made me a polished shaft; in His quiver hath He hid me.” I feel like I have lived in the shadows most of my life. I’ve never seen them as protection or a version of grace. Only since our move here have I gained a perspective to try and understand all our hard and all your love as a kind of holding or covering and maybe even safe hiding. But I’m tired. So tired. My soul longs for rest.

Each morning I do what my father taught me. I wake up and slay dragons. I do the next thing one day at a time. I do not boast of my struggles, for when I am weak, for Christ’s sake, then I am strong. My gratitude for those who have walked with my family and I over the long years is unbounding. It is with deep appreciation that I strive forward. A wandering soul was born in the west years ago. Now when I see a shadowy cloud seemingly lost in the blue sky I will remember it can be shelter. When I feel the desert rain I will understand it is the watering of a rooting soul at peace.

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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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Fear is a Liar. God is Enough

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Fear is a liar

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Fear is a liar.
God is enough.

Our Hope remains.

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I Am No Victim

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Define yourselfI am having trouble finding words. Following each new trauma it’s taking me longer to recover, and I see pieces of myself disappear completely. There is scar tissue in my heart and mind where a rejuvenation simply may not take place. I am frustrated. I wish I didn’t have to keep writing, but I must try now more than ever.

I’m a month post-op from two shunt surgeries at Hershey Medical Center in Pennsylvania. Something is wrong again. The lumbar peritoneal shunt is hurting more than any brain pressure relief it could bring. My dad will drive me back to Hershey Sunday for a Monday surgery, my 4th since March. I’m broken. I won’t try to describe my pain anymore. It refuses to be named. I’m afraid for my life.

Months ago I walked into Delaney’s room and heard a hauntingly beautiful song by Kristene Demarco playing on her little bluetooth speaker. It’s become my anthem.

I’m desperate. I’m angry. I’m sad. I’m confused. I’m misunderstood. I’m lonely. I’m scared. I’m tired. Oh so tired. When these feelings try to define me I play the truth. Over and over again.

I am no victim. I am who He says I am. He is who He says He is. I’m defined by all His promises. Shaped by every word He says. 

In my suffering I am tested. I hear Him asking me, “Who do You say that I am?”

You are God. More than able, Ever Faithful. Always good.

There are beautiful stories to tell. He’s put His arms around me and called me Beloved. This would be enough. Dayenu. This is enough. But His Grace is greater.

I began blogging in 2010 on Team Danica because so many of you wanted to know how to pray, how to give and how to carry our hearts. It was a way for me to share information when I had no strength to share the emotions over and over on a personal level. I am in this same place right now.

God is making a way for our family. I will have surgery again next week. Somehow in the following weeks He will carry us to Arizona, a place where I feel the most well and will have the best chance to heal and live. Dan will take some time off work to care for me. There are a hundred details that are unknown. If there was ever a stepping out in faith this is it.

Thank you for praying and for loving. Your steadfast friendship shines truth too.

This song is on repeat as I fall asleep every night. This album is playing over and over again in our home, on my phone, on my Kindle and in my car. Find it. Download it. Stream it. Buy an old school CD. Know for sure. Whatever hard you are facing. You are no victim. You are who He says you are, and He is who He says He is. Believe it. Rest in it tonight. You are beloved.

Our Hope Remains.

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