Archive of ‘Motherhood’ 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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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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Dear Delaney…On Chiari and Seeing and Staying with Pain

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

My darling girl,

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

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

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

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

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

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

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

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

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

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

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

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

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

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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

by

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

Day 571.

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Our Hope remains.

Rainbow

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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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Fear is a Liar. God is Enough

by

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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Dear God, (About Laney)

by

LaneyLookAZ

“Be alert, be present. I’m about to do something brand-new. It’s bursting out! Don’t you see it? There it is! I’m making a road through the desert, rivers in the badlands.”–Isaiah 43:19

Dear God,

I found a letter Delaney wrote to You. It was a gift, because all mamas wonder where their children’s hearts truly lie. I’m loving my girl in a more desperate way lately. Each day is one less I have with her across the hall. I question if I’ve loved her in the right ways, and if I’ve pointed her to You before anything else.

I’ve sat in this tiny corner of the world for so long now. She’s seen my faith in private ways. My open Bible in the morning. Music streaming about You. My knees on the floor at the bench where I go for the crying kind of praying. She’s seen my service to others through piles of letters waiting to be mailed or care packages sitting out until I get them just right. She’s listened to me take phone calls late at night from people I’ve never met, sharing our story, helping them take the next brave step in their own. She sees my eyes light up when I talk about the Option EDS retreat. She’s seen meals show up on days I could not feed her. She’s seen checks come in the mail from all over the world and understood they were Your provision for us through other’s hands and hearts. We haven’t been in church regularly. She doesn’t have the muscle memory of every Sunday worship and preaching. Instead we mostly gather around the living room and have “home church.” She says it’s one of the most special things about our family. I hope she knows the Body of Christ is as big as we’ve been loved, but the local gathering of believers is important and necessary too. I’ve failed her there. I’m sorry.

You’ve cared for her all those times I’ve packed my suitcase and went away. I always left her a letter to find. Surgery after surgery I wrote her as if I might not come back. I never wanted her to guess about how much I love her or how much peace she could find in You if it was time for me to go. You’ve given her a way of moving forward with joy even when things were so painfully stuck here at home. She’s seen me in unspeakable pain. She’s watched her sister suffer. She’s felt her daddy’s breaking heart for it all. And still she gets up and does life with a fierce expectation of good.

Lately I’ve felt the world pressing in on her. I’ve seen her scratch her head about people who call themselves by Your name but do and say things that look and feel so completely different than Jesus did. I’ve had to talk about nuclear war, sexual harassment and abuse, divorce and drugs. I don’t know if I’m getting any of it right. She is thinking about her future. I haven’t raised her to be looking for a husband or dreaming of having babies at fifteen. She knows my greatest calling has been in my role as a wife and a mother. I think this is enough. You’ve given her gifts. I tell her over and over again if she seeks You first all these things will be added unto her.

A few weeks ago I felt Delaney’s spirit hurting. Looking through her eyes I could see how small this cold and snowy street in Ohio seems. I was in so much pain. I was paralyzed with the fear of my brain shunt failing again. You made the way for us to travel to Arizona together. Just my girl and I. She fell in love with the desert. She could scarcely believe how happy and well I was when we were there. We spent every moment together, and it seemed to fill in empty spaces of time we thought we’d lost.

She talks about all this in the letter she wrote You. Moving our entire lives across the United States feels too scary. Four times I’ve left Ohio in February to find relief and heal. Four times I’ve come home knowing I could have a more well life in that place. But I was afraid. She believes us staying here. Me hurting like I am today. Me risking another invasive brain surgery. Me not being able to lift my head some days. Me biting my cheeks to try and hide the suffering. That it’s not the role of a martyr so she, Dan and Danica can have the better choice here. She believes what Dan has always said. She is only as well as I am. Why would I not take the risk to have the best life?

God, It’s true. I’m scared.

On our last hike through the saguaros we built an Ebenezer. “Thus far the Lord has helped us.” I believe You direct our paths through providence and provision. I know for sure with You all things are possible. I want Delaney to see You make the way in the wilderness. I want her to see You doing a new thing.

Give us the faith. Show us the way.

From You. Through You. To You. Glory forever.

Amen

Ebenezer LaneyandIAZ SaguaroShadows

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