Archive of ‘Team Danica’ category

Come after me. Meet me here again

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Ripening
“Even when we don’t desire it,
God is ripening.”

-Rilke, The Book of Hours I, 16

I’m sitting here at my desk watching my cursor blink as I rub my tongue over the aching gums around tooth six. It’s become the razor on my wrist. It’s the place I can touch over and over to distract from all the other pain. A few days before Christmas in 2019 I suffered a tiny injury from popcorn. Twenty months later I am not only resigned to this wounding, but it’s my darling.

I’m not exactly sure when it began. It was a slow fade during the eight weeks in bed recovering from my tethered cord surgery in March. Lent ended. Easter came and went. I wasn’t making it to my morning nest chair. The spiritual discipline and delight of beginning each morning in praise and prayer was lost. I was lost.

During this dark time a dear friend sent me a care package with a tiny canvas she painted. The above quote was hand written around the borders. How did she know? I had nothing left to seek Him anymore. I wrestled with childhood theology. The inkling of desire. The struggle with doubt. This was supposed to be the proof He’d claimed my heart. But what now?

Several weeks ago, as I was fighting for my Rituximab infusion and making plans to travel back to Ohio for treatment, I ordered the book of Psalms. A single volume. I counted the days left in Ordinary Time in the liturgical calendar and purposed to read one Psalm a day until Advent. My hope has been an honest soul reckoning and a strangled prayer, “If I’m yours, come after me.”

I cannot catch you up.

I can tell you what I did today.

My dad picked me up early this morning to drive me to pain management for occipital nerve blocks. Six deep needles under X-ray and ultrasound to avoid all the hardware and shunt tubes. If they help even a little we will ablate all the nerves in another procedure. Skull base headaches are just one brand of pain I carry, but this doctor has given me new hope. I was supposed to rest my head and neck when I got home. Instead I pushed myself to sit here in my office and fight.

Made my first entry in my post nerve block pain log.

Called the Phoenix Children’s pediatric cardiologist who did Danica’s echo to make an appointment. We are referred back to him because of Danica’s scary tilt table results. Got an appointment for September 14th.

Called the diagnosing cardiologist who prescribed two meds for Danica on Thursday to follow up on a peer to peer appeal because our insurance denied the very expensive drug that will be safe enough to slow her little heart. Still denied.

Logged pain.

Called the drug company. Yes, they have an assistance card that will help up to $160 a month for one dose daily. She needs two. It’s not nearly enough help.

Researched getting the drug from Canada.

Cried a little.

Called scheduling for imagining. Emailed the new order from Johns Hopkins for an MRI for Danica. Her X-Rays and CT show the slipping below her fusion. Got an appointment for next Wednesday morning. Called Hopkins to let them know she is scheduled.

Logged pain.

Called Delaney’s neurosurgeon at Weill-Cornell and left a message with her symptom diary. We see him virtually next Friday to go over her X-Rays and MRI.

Called our car insurance company about the $150 a month extra we are paying to insure Delaney who will be returning to college and rarely driving. Got it reduced to $100 a month because she will be over 100 miles away. I mapped it door to door. 104 miles.

Logged pain.

Called the local oncologist who has agreed to see me and consider my autoimmune encephalitis/PANS case. Made an appointment for August 19th. Called my Ohio oncologist to have entire history back into 2015 sent to him. Filled out new patient paperwork including an agreement I will pay 20% for appointments and any scheduled infusions knowing this access to care will mean several thousand dollars each treatment. But thank you God, maybe, no travel and collapsing in my own bed. Please.

Cried a little.

Logged pain.

Fielded interruptions from the girls trying to shop for back to school online. Why is this such a hard and joyless thing for us year after year? No, that’s too expensive. Go through your closets. What still fits you? Danica collapsed half way through with racing heart. Mom, I can’t do it. She needs her medication. Mom, I don’t need new shoes. Mom, Go lay down.

Called the cardiologist again. Fight dammit.

Logged onto ASU. Did the math. Texted Delaney her semester budget for food and miscellaneous expenses. Bought her a sturdy grocery tote bag on Amazon to carry her groceries in. Worried about her instability symptoms and if she can carry heavy groceries at all. She made an appointment on August 10th in Tempe for fingerprinting and an I-9 form for her new job at the ASU art museum. Worried about her physically being able to work and go to school full time.

Ran my tongue over the screaming gums around tooth six. Yes. That’s better. Focus there.

Logged pain. Called the pain management office to share my pain log. Did you feel relief? Yes. No. Maybe? It hurts so bad, but there were needles. No, I wasn’t resting. My arms and hands and low back and legs are sore and twitching. Right. Totally unrelated because you’ve never heard of this. Okay. Thanks. Made a follow up virtual appointment for Monday morning.

Laid down and watched an episode of Gilmore Girls with Danica.

Cried a little.

Texted Dan I can’t make dinner. Can he stop and buy me sweet tea? I can’t make any. I’m sorry.

Answered a text from a friend. Do you think your Ritux infusion is working? Ummm. I know it was too little too late after too long. I will need it again. Count the five weeks. The week of August 29th.

I’m suddenly in Psalm 6 with David.

“Be gracious to me, O Lord, for I am languishing;
heal me, O Lord, for my bones are troubled.
My soul is also greatly troubled.
But you, O Lord, how long?
Turn, O Lord, deliver my life;
save me for the sake of your steadfast love…
I am weary with my moaning;
every night I flood my bed with tears;
I drench my couch with weeping.
My eye wastes away because of grief;
it grows weak because of all my foes…”

Come after me.
Ripen me.
I’m not enough unless you come.
Meet me here again.

This song has been on repeat day after day after day.

(Steadfast love. Friends, you are His for sure heart for us. Until there are new words. Thank you.)

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Less to Say. Clinging to Good

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All things hold together

“I wish I
could say this desert
to you. But I
cannot say
in words

what I am, only
what I

am not, what
occurs beyond me
and is

therefore
knowable. It’s
beautiful here; wide-
open, empty. Come
with me. There is

so much
less to
say here.”

-David Hinton, Desert Poems

Day 857.

We’ve lived in this desert place for twenty-eight months now.

This year began with my usual scribblings of a word to guide me and things I hoped God would do in and through me. Everything fell away. I sat here with only one pressing call.

Say less.

There were two passages of Scripture I tied my days and nights to. They became like breath to me. They were my holy yes.

“He is the image of the invisible God, the firstborn of all creation. For by Him all things were created, in heaven and on earth, visible and invisible, whether thrones or dominions or rulers or authorities–all things were created through Him and for Him. AND HE IS BEFORE ALL THINGS, AND IN HIM ALL THINGS HOLD TOGETHER.-Colossians 1:15-17

And “Cling to what is good.”-Romans 12:9

Delaney’s Chiari diagnosis and travel to NYC in March, the week Covid exploded, was a hard stop. Her brainstem compression was as invisible to us as a deadly virus. Both faced off with my visible idols. I was losing the rental home I’d begun clutching. I was sacrificing the plan to host another Option EDS retreat in Corolla, specifically for women who are leading awareness and research, fundraising and community efforts. I was filing away the 501c3 paperwork and my dream of establishing a respite non profit here in Tucson. All of it fell to dust in my desperate prayers.

God, Please heal my girl.

Dan’s dad, our Curt, our PeePaw, left this world, and like many we’ve had no time or space or connection to grieve. It’s a cavernous loss. Funerals matter. Delaney’s senior year of high school and traditional graduation were ‘canceled’. I didn’t realize in the dozens upon dozens of life events I’d missed I was so looking forward to this one. Celebrations matter. Our first truly consistent practice of attending church as a family, partaking in the Sacraments and being involved in a local Body in other ways came to a halt. I prayed year after year to be well enough to see this deep desire of my heart realized. I don’t know when we will go back, but we need it. Community matters. Most of the measures of healing I’d experienced since moving here were overcome by a cruel mouth wound and retethered spinal cord and no help for either. The layers of suffering strangled me in a new way. Hope matters.

And the world got desperately ugly.

Everyone had too much to say as loud as they could. I didn’t recognize the God tied to anyone’s thrones and dominions and rulers and authorities or the need to be right more than kind. Social media was the most unbridled tongue I could imagine, and it broke my heart.

I sat with the call.

Guard your mouth.
Say less.

I breathed in the peace of Him who is before all things and in whom all things hold together.

And I clung to the good.
There was so much good.

Our sweet little home. A sturdy roof. A skilled neurosurgeon. Your donations providing access to specialized care. Protection and provision traveling and while in New York City. The miracle of a safe and beautiful place to stay. The kindness of strangers. The understanding none of us are strangers. Our Amy coming to be with us. Healing. The stability of Dan’s job. Daily bread. Hunger for the Bread of Life. Delaney’s scholarships. Delaney’s brave heart to begin at ASU no matter the challenges and isolation. Danica’s scholarships. The wisdom and courage of PRCA as they committed to in person learning. Danica’s fusion hardware holding on. An anniversary of one year without surgery for me, the first time in thirteen years I wasn’t cut. A working shunt. My parents just down the road. My sister Rochelle’s visit for my birthday that saved me. The sun in my face every time I lift my eyes to the hills. Rain as mercy. Grace to endure the pain that will not let me go. Love on top of love at every right time giving us enough and always pointing us to Him. Lessons learned in how to trust Him more in abundance and in need.

You.
Yes, you.

It’s risky to be quiet. The fear of being forgotten is real. You kept praying and encouraging and giving.

I’m not sure how long I am to whisper, but if you listen closely you will hear the two silly words I say over and over again,

Thank you.

(I know I’ve shared this before, but it is one of my life songs and is my prayer and praise now more than ever.)

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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 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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5343AE46-1245-4A60-A1B3-89909E1C239D
“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

by

Chiari Lightning

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

God is meeting me in this dark place.

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

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

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

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

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Team Delaney. How Can I?

by

Laney Red

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

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

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

I got Delaney’s story wrong.

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

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

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

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

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

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

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

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

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

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

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

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

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

Our Hope Remains.

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For Those Paying Attention. Thank You

by

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

by

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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