“I wish I
could say this desert
to you. But I
what I am, only
am not, what
occurs beyond me
beautiful here; wide-
open, empty. Come
with me. There is
-David Hinton, Desert Poems
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.
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.
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.
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,
(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.)