Archive of ‘Tucson. A New Thing’ category

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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How Are You Feeling? Two Arteries

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Hope in the Desert
“This is not despair,
not the retreat into the deep wound
but a conscious living of each day

This is the placing of one foot before the other,
not the free stride of the unencumbered
but the careful tread of the initiated foot

This is learning how to walk
without familiar landmarks, alone
even in the company of others,
not ready yet for new direction

This is the living of each day, aware
that what you cannot predict
may still loose sudden tears, yet
that laughter too is possible

This is when you struggle
as plants in arid soil
strive without conscious knowing
to stay alive until the rain

This is a time for faith
that this most naked agony of loss
will ease, and not corride the spirit

This is the time to trust that day after
labored day you will move forward,
open to joy as well as pain;
two-sided coin, you proffer for remembrance.”
–Maude Meehan

I’m sitting in my new nest. I shuffle to my spot just before dawn and settle in to watch the pink glow grow over the Catalinas. Dan and I share coffee here most mornings before he leaves for work. These quiet moments together are an intentional touchpoint. It’s often the only time in a day we may sit face to face and focus on one another. He leaves, and I turn to my morning rituals of meditation, reading, journaling and prayer. To be home. To be in a kind of sustained rhythm is something I was made for. Something I longed for. I don’t take a minute for granted.

The life of chronic illness doesn’t set you up for regular soul nourishing habits. There are days you simply cannot get out of bed. Meditation is impossible unless you count focusing on the pain. Scratching down feelings often magnifies the ache. Prayer is mostly, “Please, Jesus.”

Everyone asks how I’m feeling. They want to know if I’m as well as I look in the sporadic photos I’ve shared on social media since arriving here in Tucson on August 25th. It’s a tricky question. It’s a difficult answer. I often say, “I’m healing but never healed…” Everything I experienced during my previous winter visits to Tucson has been realized. But I will always have Ehlers Danlos Syndrome. This genetic mutation is forever embedded in every part of my connective tissue. I know I am fearfully and wonderfully made.

I have significantly less pressure headaches and symptoms. This was the main reason we relocated here. My Intracranial Hypertension was unbearable. After nine various shunt surgeries we understood current shunt technology coupled with my challenging anatomy and EDS would never bring lasting relief, especially in northeast Ohio. Quite frankly I wanted to die. After surgery on July 4th and again on the 9th I was back home lying in my dark room in unspeakable pain, and I couldn’t see my way back to Hershey for a revision. I was done. I’d felt this hopelessness before, but the miracle that arrived in a text and a phone call on August 2nd gave me the courage to crawl back into the car and take the long turnpike trip back to Pennsylvania for another revision. Removing a mess of old tubing from my abdomen and rerouting the tubing to empty the cerebral spinal fluid into my heart was something I said I’d never do. I have a cardiac condition called Postural Tachycardia Syndrome (POTS). I have a Pectus Excavatum, a bone malformation of my breast bone that curves inward and pushes on my heart and lungs. I have chronic Strep infections (PANDAS/PANS) that cause heart inflammation. I have stenosis in my right ventricle because of multiple central lines placed for plasmapheresis. When my neurosurgeon came into my room and so calmly stated what he needed to do I didn’t think twice. The hope of the move gave me courage and faith. The surgery was a success.

Do I need my shunt here? Yes. I now have two working shunts. On calm and sunny days I still hear my brain shunt buzzing when I move positions, particularly from sitting to standing. On rainy days or when the pressure is changing more drastically, something that happens much less frequently here but is still a catalyst, I can feel it working overtime. I can also feel it in my heart. It cannot always keep up. I’ve a handful of days I needed to be in bed because of the pain and symptoms. If nothing else changed about my health except this one thing it would be enough.

The above poem describes the “conscious living of each day” my new home allows. It is a slow and careful movement through foreign or forgotten neuro pathways and literal paths too. The smallest thing can trigger the trauma and tears. Much of the reason I’ve been so still and quiet is to process and unpack the accumulated grief and suffering. But I am finally in a place where I can bury some of the hurt.

I catch myself laughing. Even out loud. I’ve stopped biting my cheeks. My face has relaxed from the constant furrow of pain in my brow. I walk past a mirror, and I see a woman living not just surviving. Ann Voskamp wrote, “Joy and pain, they are but two arteries of the one heart that pumps through all those who don’t numb themselves to really living.” For oh so long I was necessarily numbing myself. Now I lift my face to the sun and listen to the strong beat of a heart that knows joy and pain and can celebrate them both equally. The rise and fall of my chest is a new song of praise. I don’t want to forget. My God wants me to remember so long as I tell the story rightly and point to the healer of the heart’s eye through which He is seen and glorified.

“Come and hear, all you who fear God; let me tell you what He has done for me.”–Psalm 66:16

(For those of you specifically interested in the other areas of healing I’ve found since moving here I will slowly continue unpacking them in future posts. My heart’s desire to invite you into a respite place in Tucson is perhaps the most real calling I’ve ever had. I’ve seen miracles. Nothing is impossible with Him. Stay tuned.)

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In Returning and Rest

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Sunset

“Quietness is a receptive emptiness. Only the meek will inherit the earth because only the meek have room within themselves to receive such a wide and wild inheritance.”–Christie Purifoy, Roots and Sky: A Journey Home in Four Seasons

“In returning and rest you shall be saved; in quietness and trust shall be your strength.”–Isaiah 30:15

This was my favorite verse as a child. I didn’t fully understand the context of Isaiah 30, but something in me knew even then about how easily my heart and life could slip away from my deepest need and purpose. The clamor of the world so easily fills up sacred space reserved for relationship with God. “The bread of adversity and the water of affliction” get noisy too.

It’s been one hundred and forty-one days since I’ve published anything here. I had the fourth shunt surgery this year, and God quickly and decidedly picked up our family and carried us to Arizona. The time away from this blinking cursor has been a season of necessary retreat. I’ve leaned into the Lord who waits to be gracious to us and exalts Himself to show mercy to us. Since late August I’ve stepped outside my tent to breathtaking desert and mountain vistas. The sun rises over the Catalinas and sets behind the Tortolitas. This is my manna. This is my promised land. This is my home.

One of only five posts in 2018 was in early February. I was finally regaining my memory from the November spinal surgery and Aslan was on the move. I never could have imagined just how powerful the hope I felt would be worked out in the months to come.

There have been dark days of doubt in this Gauntlet, but deep down I’ve always known every single detail of our narrative was more about Him than us. We’ve pleaded with God for a break in the suffering. We’ve begged for a time of peace and restoration and an end to this story. We’ve ached for something new.

I’m telling you now. Something is ending. God is doing something new.

In Dan Allender’s book To Be Told: God Invites You to Coauthor Your Future he writes about how our culture fails to celebrate endings. He talks about the literary idea of denouement.

“Denouement is an ending that serves as a prelude for a new beginning; there is always a next turn in the road. A new story begins the moment an old one ends. But a denouement is a respite that calls us to stop the journey for a brief interlude–to eat, drink, sing, dance, and tell our story to others…One of our greatest failures in our busy, driven culture is that we don’t celebrate the temporary untying of a complex narrative…We don’t allow endings to be noted, let alone celebrated. Therefore we never let denouement to invigorate the upward movement of a new story. And we will only love our story to the degree that we see the glory that seeps through our most significant shattering. To see that glory, we must enter into and read our tragedies with confidence they will end better than we ever could imagine.”

There is a new story. The words are hard fought. My brain is still broken in many ways, but I hear the call to return and remember. He’s binding up the brokenness and healing the wounds. It’s a “wide and wild inheritance.” Thank you for your great love and patience in this time of denouement. Glory is seeping through every suffering. I’d rather go blind than look away.

(Take a few minutes to rest right now. Be still and know. My childhood friend, John Albert Thomas, is a solo piano composer. His songs are the peaceful background of many of my days.)

 

 

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