“If I did not like the way the light looked at a given moment, I knew it would change. If I loved the way the light looked at a given moment, I knew it would change. I could not speed it up, and I could not slow it down…the light was my life…Paying attention to it, I lost my will to control it. Watching it, I became patient. Letting it be, I became well.”–Barbara Taylor Brown, An Altar In The World

I’m sitting at the Raleigh-Durham airport. Our flight should have been in the sky in time to see the sun setting from the windows. Instead we are on a several hour delay. I have traveled alone the majority of my life. I’ve flown many times for work, pleasure and health appointments. I have rarely minded settling in to people watch, read and write and listen to a favorite playlist. When I don’t have to manage other people’s emotions I can handle most anything and even find some kind of enjoyment in it. With Dan and the girls along I become acutely aware of their fatigue, their frustrations associated with boredom and waiting and their hunger and thirst. Tonight I sit with a bottle of Purell and a package of wipes. I’m anxious for them and with them. I take a Valium for my neck in spasm from carrying my bag and sitting so long in a strained position, and I pray. “God, don’t let this long day and night become an ugly ending punctuation on such a beautiful trip. Help us be kind. Help us be patient. Take us home safely. Amen.”

We’ve been in North Carolina on the shores of the Atlantic for a week now. It wasn’t a secret. It was a last minute, quiet gift from dear friends who know more than most what we’ve been through and what we are facing. It was perfect timing. The Tuesday to Tuesday slid between two tropical storm systems. We had beautiful sunny days. Every moment was Grace. Grace by definition is “undeserved merit.” People look at our hard and often say when we get a small break, “No one deserves it more than you guys do.” We don’t operate from this place.

This trip still pinches. The “cheap” flights come with baggage fees. The kennel for Twixie, the airport parking and inevitable eating out despite our many peanut butter and jelly sandwiches strain our “impossible” budget. I tried not to speak in terms of “not enough” to Dan and the girls. I live in the truth of DAYENU. Enough. This entire trip is MORE THAN ENOUGH. This is reality for me. I literally don’t take a single breath for granted. I want my family to understand this as fully as I feel it, but I’m not sure anyone can unless they’ve sat in the painful void as long as I have.

A little gnawing voice has whispered we shouldn’t be here at all. People donated so much money so I could go to UVA and have my latest surgery. I constantly run my fingers over the map of the winding skull incision where prickly new hair tries to grow. I feel the raised bump of my shunt and follow the tubing down the side of my head and behind my ear. I remember. This is why you’ve loved us over and over. This is what you prayed for. You’ve wanted a pain free day in the light for my family and I. God answered with a week of them.

There’s an email in my inbox from Danica’s retired orthopedic surgeon’s assistant. We are trying to schedule Danica’s new appointment in Cincinnati so we are able to see him after her scans and consult with the current head of orthopedic’s at Children’s. It’s never easy coordinating. Dan and I cannot wrap our heads around another trip with long drives on roads that hold so much dread. We can’t think about hotels, bad food, waiting and more waiting and most of all our Danica Jean’s eyes trying to be brave but spilling tears of fear about the unknown. I tried to stay in the HERE and NOW all week but sitting here tonight watching Danica hold her little neck in her hands with the pained look I know all too well I am scared of what comes next.

The light is ever changing. I’m always chasing it. I’ve come to know treasures in darkness. I thought I could write and publish a book about the gifts found in ugly packages. The more I read over my own words the more hollow they seemed. I didn’t delete them, but I hid them away. The same friend who gave us this trip asked me to pull “Gauntlet” back out and read it again. She challenged me to reconsider what I poured from my heart there…maybe not as it is written but at the very core. My vision has matured. What was myopic about Danica’s miracle and my own journey has new layers now. I was trying to write an ending that hasn’t happened yet. I was trying to speed up what could only be seen by slowing down.

I am watching.
I am paying attention.
I’m letting things be.
I’m becoming well.

“And I will give you treasures hidden in the darkness–secret riches. I will do this so you may know that I am the LORD, the God of Israel, the one who calls you by name.”–Isaiah 45:3

“If you live in the dark a long time and the sun comes out, you do not cross into it whistling. There’s an initial uprush of relief at first, then-for me, anyway- a profound dislocation. My old assumptions about how the world works are buried, yet my new ones aren’t yet operational. There’s been a death of sorts, but without a few days in hell, no resurrection is possible.” ― Mary Karr, Lit

The last time I wrote here I felt like I was dying. I wanted to die. My intracranial pressure ushered me into one of the darkest times of my entire life. The unrelenting pain felt as close to hell as possible without total separation from God. Without the “inch of daylight underneath my door” I might not be here.

I knew my third lumbar shunt had failed. In addition to the mind blowing headache I had a knife like pain where the shunt was placed under my ribs on the right side. My face carried the expression of someone being stabbed over and over again. I don’t remember smiling for months. I don’t remember laughing. When I passed by a mirror I gasped at my reflection. It’s easy to forget who you are or why you are here when it feels like the demons of pain are inhabiting every part of your mind, body and spirit. You just want release.

Our March trip to Cincinnati for critical and overdue scans and appointments for Danica showed shocking images of her broken cervical fusion and hardware. They jolted me into an even more heartbreaking reality. A close friend visited me the week we returned. She knows in an intimate way how I suffer. I texted and asked her to wait a few hours later than planned before arriving. She told me she was prepared to perhaps find me dead when she arrived. She would be the one I wanted to find me. She wouldn’t blame me. My girls would just know their mommy was very sick, and my body couldn’t survive any more. She found me crumpled in my corner chair but very much alive. Couched in her compassion she reminded me I was the only one who could advocate for my sweet girl. I needed to live, and I needed to do whatever I could to be more well for the fight.

Deciding to live meant humbling myself AGAIN and asking for your help. You can’t know how gut wrenching begging is unless you’ve had to do it. I prayed for two things at the beginning of 2016. I wanted no new surgery, and I pleaded with God I wouldn’t need resources from you. He said “No” to both. He orchestrated the details for me to get an appointment with a very skilled vascular neurosurgeon at the University of Virginia right away. YOU gave us the money I needed to travel, pay for upfront medical costs and for the long hotel stay needed for diagnostic procedures and post op. I left my family and headed to the Blue Ridge. It was fitting I would find real help with dogwoods blooming all around. In a surgery not without complications my lumbar shunt and tubing was removed. I have two large incisions on my back and my upper abdomen from the tricky extraction. The surgeon then cut a flap on the top of the right side of my skull and implanted a VP shunt. The tubing begins in a hole drilled in my skull and snakes through smaller cuts behind my ear and down through my chest all the way into my abdomen where it empties excess cerebral spinal fluid that collects around my brain and causes the pressure. This shunt is different in many ways. Most notably it is adjustable. This means as pressure situations or my body’s reaction to them change we can re-calibrate without a new surgery.

I don’t have a headache. I haven’t had a headache since my surgery a month ago.

My pain was an incarceration. Most days I felt like I’d been thrown in the dark and bitter hole of solitary confinement. I’ve been adjusting to the sudden light and the sights, sounds, tastes and even smells of good. I didn’t know if it would happen. My husband and children didn’t know if it would happen. Every surgery and treatment has been like a parole hearing. The results of this VP shunt placement are a “YOU ARE FREE.” I know I’m out “on bond.” My body will fail in new ways and commit old crimes, but today, in the light, staring at the sun, I know for sure God heals. It is a mending that will come in fits and starts until heaven. I surrender to this, but I also believe He wants my resurrection to start HERE and NOW. He’s working out His kingdom come on earth in my heart and life. This is GRACE. Dear departed Kara Tippetts wrote these words in her book The Hardest Peace: Expecting Grace in the Midst of Life’s Hard as she slowly died from cancer.

“Jesus didn’t have to extend His love. He didn’t have to think of me when He went up on that cross. He didn’t have to rewrite my story from one of beauty to one of brokenness and create a whole new brand of beauty. He simply didn’t have to do it, but He did. He bought me. He bought me that day He died, and He showed His power when He overcame death and rose from the grave. He overcame my death in that moment. He overcame my fear of death in that unbelievable, beautiful moment, and the fruit of that death, that resurrection, and that stunning grace is peace. It is the hardest peace, because it is brutal. Horribly brutal and ugly, and we want to look away, but it is the greatest, greatest story that ever was. And it was, and it is.”

I’m remembering He loves me. He’s always loved me. In the hellish confusion I’d lost sight, but He was there. He’s always been there.

Resurrection is mine in Jesus.

Stunning Grace.

Changing light.