When Life Spins Out of Control (Bekah Bowman, Guest Contributor)
My eyes met the ground in an attempt to avoid contact with the doctor, who was sitting across from me and my husband. My mind was spinning. I was trying to process the words the doctor had just spoken out loud, but they wouldn’t compute. The warmth in my lap was from my nearly 5-year-old son who was sitting there holding the phone just a couple inches from his eyes trying to watch his favorite show. He was going blind. And now we had just been told he was dying and there was nothing we could do.
All we knew to be true about life was whiplashed away, changed in a millisecond of time, landing us in an entirely new world we had no idea existed. Our son had been very sick for some time, but up until this moment, we had hope there would be an answer with an action to fix it. Instead we left the appointment with promises of pain and symptom management and support. That and a piece of information that I couldn’t quite absorb in the moment, but hung in the back of my mind—this disease, Batten, was genetic. Could our younger son Ely have this disease silently lying in wait in his body too?
Two months later, after submitting a saliva sample to genetics, we got a call that confirmed our deepest fears. Ely, too, was affected by this disease and would follow in the footsteps of his brother. I collapsed on the sidewalk outside my mother-in-law’s house where we were vacationing. Crippled by grief, my legs wouldn’t work and all I could do was meet the hard, cold cement, coloring it dark with tears that flowed. I filled the air around me with wails that told the neighborhood a hard, cruel story.
Navigating circumstances out of our control
Life held rapid changes as Batten disease progressed quickly in Titus. There is no comparison for the learning curve all the machines, equipment and challenges brought through our door. We had to be fully present so we could dive in and participate, whatever the next moment brought us.
I found myself comparing our life to that of a flower in a garden.
Some days we felt the perfection of sunshine and a light breeze. Titus’s breathing would be steady, the oxygen tank off. We would hear his laugh, and even though his vision was gone, we’d see that spark in his eye. The one that told us he was ready for an adventure. Ely would jump in his brother’s lap and the two would giggle with delight. For a moment, we’d forget there was ever a thief in our home stealing our boys away. In those moments, it was just us, our family—connecting deep, with love and giggles communicating what we no longer could through verbal conversation.
Other days held wet, gray skies that poured down vengeance and drowning grief. The cries of mysterious pain from our son’s gut tore at our hearts. We scrambled to fix it, to make him better. We were reminded this can’t be made better. This disease was relentless. The oxygen concentrator would hum loudly at the end of our hallway, miles of tubing looped throughout our home to provide our son with the assistance he needed to breathe. The hum reminded us his lungs weren’t working right. Loss mocked us as Batten stole him away bit by bit. In these moments, it was unbearable to know we would do this all over again in a few short years with our youngest. This was no life.
Other days held a cold winter frost that caught us by surprise halting us on our journey toward fruitful blooms. We’d step back, reeling at the damage this cold frost had caused. We questioned the system in which we grew and the environment we were placed in to begin with. Days like this were the first time Titus had a seizure. The day we got his diagnosis. The day we got Ely’s diagnosis. And suddenly, the end of summer 2016 when it was clear our oldest son’s body had stopped working. End of life was near and we held vigil by Titus’s side, knowing soon he would be in the arms of Jesus. The anticipated separation we would experience brought excruciating pain to my soul.
The question remained on the lips of everyone watching, “How do they survive?”
This is a question you may have asked as your life endured rain storms, floods, droughts, and bitter frosts. No matter the storyline, you and I have had to figure out what to do with life when circumstances fly out of our control.
Learning to see beyond our circumstances
I love the name of Shay’s home here in the world wide web—The Spacious Place. God met her in a place of fear and what ifs, showing her a new perspective. As He shifted her eyes, she saw, in a place that had felt constricting and fear-ridden, there was actually a beautiful, soul-filling, spacious place. Similarly, God met me with a broken flower. As I experienced this life allegory of rapidly changing weather patterns, myself a flower bruised, beaten and broken at the stem—God held me deep in my roots.
Our circumstances brought me quickly to the end of myself, knowing I wouldn’t survive if I couldn’t see a way forward. In my darkness, I begged God for new eyes, holding on to the promises I had known since I was a child—that my God was faithful, redemptive and good. I had heard and experienced these truths over and over. It was time to remember them deep in my roots. As my leaves and stem took a beating no flower could endure, I saw the good, redemptive work of God forming an impossible joy-bloom hanging off a broken stem.
God showed me strength in claiming thankfulness, no matter how big or small.
I saw proof of that bloom by looking back and seeing how God had gone before us always and He would again! Looking back and remembering cleared my vision to hold on to His faithfulness in the uncertainty of my present circumstances.
The Body of Christ, our support system, showed me the power of roots. The ways in which we were bolstered by our faith community, as our leaves got hole-chewed and our stem cracked under the weight of our circumstances, brought us back to truth over and over again.
You and I—we can choose to exist in our gardens dictated by the changing weather patterns. Or, we can choose to see a different kind of brave living – that which exists beyond our fragile stems and dainty leaves, living instead deep down in our roots. And in that place, we are given new eyes to see goodness and redemption in our God-designed blooms no matter what’s going on overhead.
Read more from Bekah at cantstealmyjoy.com
Find her on Instagram @cantstealmyjoy2
Or Facebook: @Team4TitusEly
