Archive of ‘Moving West’ category

Beautiful, Terrible Finitude

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Finitude
“…These are such small decisions, really. But aren’t they all? Trying again. Getting back up. Trusting someone new. Loving extravagantly inside these numbered days. Someday we won’t need to hope. Someday we don’t need courage. Time itself will be wrapped up with a bow, and God will draw us all into the eternal moment where there will be no suffering, no disease, no email. In the meantime, we are stuck with our beautiful, terrible finitude.”-Kate Bowler, No Cure For Being Human (And Other Truths I Need to Hear)

Finitude. The state of having limits or bounds.

I was introduced to this word in Kate Bowler’s newest book, and I’ve held it close as my girls and I continue to press against the physical limitations of our bodies while our hearts ache with a seemingly endless capacity for loss and grief wrapped tightly in gratitude. I’ve not written here or really at all. I have met the frustrating bounds of my own ability to process suffering through words. This has been perhaps one of my greatest wounds ever.

Early this morning Danica’s 8th grade class left for a week long trip to the east coast. Ninety-one students and chaperones are traveling to Washington DC, Virginia, Maryland and Pennsylvania to tour some of the most important places, monuments and museums of our country and to be together, forming bonds with one another they will carry into their high school years. She is not with them today.

Initially we didn’t consider her going because the trip costs thousands of dollars per student. We talked about the emails coming in over the summer. Danica has always been quiet about wanting anything. She knows how much healthcare two thousand, eight hundred and sixty-nine dollars buys. When I was in Ohio in early July for my Rituximab infusion a woman from Danica’s school called because she didn’t see her name on the trip list. I explained the particular constraints of our family finances. She prayed with me and told me there are generous people committed to helping with this specific trip. She urged me to register Danica and believe God would make a way. Of course, He did. He always does.

I flew back to Arizona on a Wednesday. The next morning I drove Danica across town to meet with the cardiologist who performed her tilt table test several weeks earlier. Her symptoms of Dysautonomia and POTS (Postural Orthostatic Tachycardia Syndrome) present differently than Delaney’s or my own. Her heart would begin to gallop dangerously while simply making her bed in the morning. She struggled to walk up the hill in our neighborhood. She would need to lie down and rest after taking a shower. She was exhausted all of the time. The doctor immediately prescribed her several medications including a very expensive drug used in rare cases like hers. He referred us to a Phoenix Children’s pediatric cardiologist to manage her long term. It was just a few weeks until school started. We knew Danica needed real cardiac improvement for her to be able to attend in person school at all. If you follow my now infrequent social media updates you know about our insurance company’s denial of the critical drug and how we cash paid week after week during multiple appeals and then ordered it from Canada and continued to cash pay waiting for it to ship and arrive. We saw our girl drastically improve on her medications. Her heartrate slowed, and she could handle more activity. She began school with additional restrictions in place but making it through entire days.

We seek to discern the will of God in our lives, especially when we are faced with big decisions regarding our health, through prayer and provision. This is the gift in the gauntlet. When the funds were anonymously given to the school for Danica to go on this trip east, a trip she secretly wanted so badly, we were all in. For those few weeks when Danica thought she might go she was lit up. My dad gave her a nice camera to take special photos. She made a list of clothes she would need for a week of real fall weather. The school was having frequent meetings with the kids about the trip and took roommate requests for the hotel stays. The excitement was building. Then we received the actual trip itinerary.

It was immediately clear to Danica there was no way she could physically do this trip. From early morning until late evening they would mostly be on their feet and walking or standing. There is very little if any time for rest between a packed schedule of touring. With limited chaperones and the bus dropping them in an area for most of the day there was no way to make accommodations for her either. We sat together that night and cried. Danica’s heart was broken. My heart was broken. But then my girl looked me in the eyes and said the thing I’ve preached for most of her life, “Mom, It’s okay. Option A is no longer available. We will find an Option B.”

Since then I’ve been thinking of something I wrote on the old Team Danica blog in 2013. It was a a post titled ‘It’s Just Not True’. It’s long, but I will share the entire text here:

“Before our children were even born we began dreaming for them about what their lives might be like. We hoped and prayed for health and happiness and some measure of success while doing something they loved. We wanted them to know the joy of giving back to the world in a meaningful way. It seems we began to whisper the “lie” to them in our arms as wee babes, “You can be anything you want to be.”

Yesterday our Danica had her last day of preschool. There was a time we couldn’t have imagined her independently learning and socializing and being safe. Because the weather was so cold and icky the preschool picnic was held inside. We all spread out blankets on the floor to share the last hour of time together with lunch and goodies. The kids began playing after eating. One of the little girls in Danica’s class had a rhythmic gymnastic kind of streamer. Danica was in love. A group of girls began doing somersaults. Oh my, Danica’s little heart was aching. She was dreaming. As soon as we got in the car to leave she began telling me all about how much she wanted to do gymnastics as soon as her neck was all better. I was quiet. I know we have said this too often. “When your neck gets better you can . . .” We never mean to be dishonest when we say this. There are some things she may be able to actually begin doing if everything is fused and stable in October, 2015, her five year anniversary. There are plenty of things she just won’t.

When we got home she asked to put on the American Girl movie “McKenna”. Later I heard thumping in her room and rushed in. I could tell she was trying to do some kind of gymnastic type moves on the bed. I sat down, and we talked about it. I reminded her how much we had invested in her neck and how well she was doing. I talked about how even though everything seems all better she is still growing and fusing. Now is just as important as ever to obey Dr. Crawford and be careful. I explained this was not a punishment for anything. It is just part of her special life. She told me there is a gymnastics place close to our house where her friends “train”. She asked if as soon as her neck was healed she could begin. With tears in my eyes I told her the truth. Finally, I was brave enough to say it. “Honey, you will never be able to do gymnastics. It is too dangerous. There are hundreds of other things you can do, but this isn’t one of them.”

It would have be easy for me to jump to some kind of story about kids in wheelchairs who are so sick they can’t get out of bed and remind her how incredibly lucky she is. This is the internal dialogue I carry on in my own head when I begin to feel badly about all the things I simply cannot do any longer. No amount of wishing or hoping or willing or trying will make most of my old dreams a reality. I know many who are worse off than I am. If I focus on that won’t I be more grateful? Theodore Roosevelt said, “Comparison is the thief of joy.” I used to think of this only in relation to people who had the good, better and best I desired. I realized yesterday comparison to people who have less can also be a bandit. Growing up my mom would often tell me how much worse something could be to try to bring my heart back into a right place. I know she meant well, but it frustrated me. Our family was in ministry. There were always people much worse off. This too was taking away cultivating authentic gratitude for my right now, exactly how it was, whatever it was. I’ve wanted to change this in my parenting, but it’s a strange default.

Last night Danica decided to have a sleepover in my bed. It wasn’t even dark yet and we snuggled under my covers. We entwined our fingers, one of my favorite rituals. Our breathing became the same. I never knew a child could be so connected to their mama in this many ways. Danica’s sweet little voice said, “My neck and my head hurt so bad, mom.” Yes, my child, I know exactly how it feels when you push your body to do something you want so desperately but God just didn’t intend. Tears welled up as I rubbed her little spine and the base of her neck.

We can’t be anything we want to be.
We can only be what God intended.

Aligning these two can only bring real peace and happiness when we admit the loss and grief are oh so real too. Our days are written. I have been feeling a little better (I promise to tell you about all this soon), and I find my head pushing my body to get as much mileage from what could be fleeting good days. I end up hurting and cycling back to discouragement and discontent instead of the real gratitude I should be experiencing. I am so much healthier today. This is my joy. I want to tell the truth about all this to my girls. I want them to believe in impossible things but temper this hope with the realism that brings them continually to God’s plan for their lives.

“Your eyes saw my unformed substance;
in your book were written,
every one of them, the days that were formed for me,
when as yet there was none of them.”-Psalm 139:16 ESV

DanicaTMA

Today Danica and I will pack for a little trip we’ve planned to San Diego. It’s our Option B. We’ve made a list of the few things we’d like to see or do there, but we will take breaks and afternoon naps and know it’s all flexible based on how each of us are feeling. We are admitting constraints. Oh how I pray we will fill our time together with curiosity and discovery while resting in our beautiful, terrible finitude.

Thank you for your continued love and prayers even when I am so very quiet in all the places I used to tell our story. November 1st Delaney and I meet with her neurosurgeon and will set a date for her December fusion surgery in NYC. We cannot see our way from here to there. My mother grief is a brand I’ve never tasted before. I’m broken in new ways. I am terrified this will be the surgery that takes medical trauma too far for my girl or derails her from her college classes or her job at the art museum. She is pushing herself past her bounds right now. I taught her that. I pray I’ve taught her as much about surrendering things that are no longer true, allowing herself to mourn them while genuinely trusting God’s Option B for her is the best. I will update here and on her gofundme when plans are made. We will need your prayers and help.

Audrey Assad’s Shiloh has been on repeat for weeks here. It’s my prayer for both my girls.

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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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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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Home. Returning and Remembering

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

Day 571.

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Our Hope remains.

Rainbow

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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

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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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Loving and Losing Place. Risking Roots

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AZHouse

“I wonder if loving and losing a place causes our hearts to fracture. Or does it enlarge our capacity for loving and making some other place well? Placemaking asks that we love a place with all of ourselves, but placemakers don’t always get to stay in the places they have made. Placemaking offers no protection from all the many forms loss can take. Am I brave enough to risk my heart again?”-Christie Purifoy, ‘Placemaker: Cultivating Places of Comfort, Beauty and Peace.’

We’ve been in Tucson 204 days. That’s 204 days without a hospital visit. Without an ER visit. Without a surgery. That’s 204 days my body has been healing instead of undergoing a new trauma. That’s 204 days I’ve been a wife and a mother to a family that truly felt I was slipping away. This is exceeding, abundant above all we could have asked or thought when God clearly made the providence and provision for us to come here. It still feels like a dream we might suddenly wake up from.

Everyone asks if things are really that much better here. Yes. So much better. There is hard. I’m just not posting about it, and I’m not writing about it, because that was the ONLY story for too long. I know this seems like a betrayal to some in my chronic illness community, because EDS and all the demons it spawns cannot be cured, especially by relocation. Those closest to me know the truth. I’ve had bad days. Stay in bed under my weighted blanket and take pain meds bad days. Monday and Tuesday were two of them. A front moved in with rain. The pressure was relentless. Perhaps the worst since we moved here. I was dizzy and nauseous. And my heart ached. I’m still keenly aware of every tube from my shunts and the whirring of fluid being pulled from my brain and spinal cord. But I didn’t feel desperate. I could see the forecast bringing warmth and sun and knew I could endure the suffering. Real hope changes everything.

We’ve had house guests and company since early February. I’ve been well enough to offer hospitality to dear friends and family. God is in the details, and I’ve loved serving and caring for others in the specific ways only having them in your home allows. Early in Dan and I’s marriage I had beautiful guest rooms. There’s something in me that thrills at the opportunity to say, “Come, rest here awhile.” Having the space to share these stunning views and new desert life has been gift. It’s also nurtured the dream I have to offer respite to other EDS warriors here. I won’t let that go. God won’t let me.

My parents were some of the guests we hosted. They were able to visit us for eleven days. It’s their second time out. They’ve fallen in love with the mountains and the sun. And they’ve missed us too. They were the ones who showed up whenever we called. Mom would stay with the girls. Dad would drop everything to drive me to Virginia or Pennsylvania for an emergency surgery. They gave us a place to live in their basement for a year and a half after Danica’s second brain surgery and fusion when I wasn’t able to lift my head and needed my own. They were willing to buy our sweet little ranch in their name and rent it but never made us feel like it was anything but our own. They know the absolute hardest part of our decision to move here was to let that home go and our greatest fear is we will never have another one.

They are retiring. They are wanting to move here. In all their love for us they have been trying to find a way to help us again. Beginning last May when they traveled here with us to explore even the possibility of moving we looked at new homes here in Oro Valley that allow two generations to live together under one roof with very separate living spaces. It seems like a great idea and a possible work around for the higher cost of housing here and Dan’s income relative to our medical debt and the reality of the cost of ongoing care. Perhaps we could make it work. This week we realized it’s just too expensive and Dan and I can’t contribute what we don’t have. It was painful and also a strange relief.

Here’s the most beautiful thing. My dad called me to talk about the dead end. What would we do? Would we stay in Arizona? Could we without the miracle help we’ve been given this year? Did we still want them to move here if we couldn’t make a housing fit work? I cried. Dan and I only ever wanted them to make the best decision FOR THEM. They’ve worked hard in education and ministry. They did not begin saving for retirement until very late. Nothing about them putting a large home loan for us both onto their plates at this stage in their lives seems right to us. Yes, dad, come. The same God who brought us here will keep us here and provide for us here.

Half of our time in this house is up. We promised we weren’t going to talk about it until March. It’s March 17th. We have 167 more days in this place. And then what? A man came to the door Tuesday night and said the mortgage wasn’t being paid by the lienholder. I broke down in tears. This house is rented under a trust for two children after their mother died in July of last year. She built it in 2005 as a healing place. I wanted to know the story of the family who lived here before us, and I’ve found out pieces and parts. It’s made me feel connected in a deeper way than I’d imagined. It’s made me let down my guard. Hang pictures. Scatter rugs. Unpack the last box. Exhale. All the while knowing there is an expiration date on this miracle. What if we don’t even have six more months? How behind are they? If this is true what does this do to our lease?

A little broken part of me frantically wonders if this is where the miracle ends. When there is no acute need are we finally on our own? Or maybe this is the most acute need we’ve ever had. Home is essential to be rooted. My heart’s cry for 2019. “Oh God, how I want a simple little place to settle in and exhale. Please God.” Home is essential to my continued healing and the hearts of my family, especially my Dan. It seems too hard. Our medical bills. My lack of access to insurance other than Medicare which limits my access to care and the need to come up with cash for continued treatments. Dan’s career. My disability. Danica’s braces, Delaney’s college visits and actual college…How can a family try for so long and come up empty?

But it’s never been empty, has it?
It’s always been Dayenu.
It’s always been enough.
More than enough.

One thing I know for sure about our God. He is always working behind the scenes preparing all the details long before He reveals the plan for deliverance. Isn’t this what the entire Old Testament teaches us? It’s always through a story we can best see how mighty to save He really is. The weaving of tragedy and heartache along with blessings and kept promises keeps us looking for the glorious Hope in the wilderness.

Christie writes:

“The wilderness is not necessarily a desolate place. It has to own unique beauty, and that beauty is enough. It does not need us. It does not ask for our participation…The gift of the wilderness is that this is the place where we go to simply receive. This is the place we go to listen. In the wilderness, we are given the opportunity to lay down the burden of our desire to make and remake so that when some other place invites our participation and our creative efforts, we are ready to offer those things in humility.”

Our Heavenly Father longs to give us good things. He is the top broker in desert real estate and specializes in wilderness homes. He knows what we need and the deep desire of our hearts. More than anything He’s changed these hearts to trust Him with whatever He has planned. If it’s a cleft in the craggy side of the mountain we will go. If it’s a tent by the wash we will go. We know who He is. We trust His character and see His faithfulness. We believe God will make a way, even though we can’t see it now. We also believe there is no way for us to coordinate this plan for ourselves. There is freedom in this trust. Help will come. “God, please bring help. You know we give you every glory.”

Placemaker

We’ve had the most lovely past few days as a family. Thursday we went to bake goodies for the Ronald McDonald House. Friday I took the girls for haircuts. Dan came home to us hanging on the back patio listening to a family favorites playlist. We stayed out to see the sun set and much later. I whispered under my breath, “God I’ll never take this for granted.” Saturday we went downtown to an art show and had dinner with one another. Danica’s friend came to spend the night and they giggled and goofed off and Dan made a bonfire for S’mores. This morning was church and then Dan and I went for a long walk together. That’s a lot of life. Life I would never have if not here. I whispered as we walked quietly, “God, I’ll never take this for granted. Not ever.”

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

Will you please pray for our family? Nothing is too hard for our God. Please pray for Dan’s work. That he will be recognized for his skills and commitment. Please pray for my sweet girls. They know the uncertainty about where we might live, and it’s hard on their hearts. Please pray for me. May I not miss a single glorious day in the place God’s given us and trust Him completely for everything we need for every good work. And I humbly ask you to pray for provision. Even so boldly as to ask for a secure long term home for us. Oh how I long to be rooted.

Thank you dear ones. You are God’s hands and hearts to us. 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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IMG_1450 (2)

“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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