The Power of Story When We Move From Grief to Grace
When a devastating diagnosis transforms into unfathomable beauty
I met sweet Sarah before I connected with her mama, Jeannie.
I stumbled across a precious photo as I was meandering through the Substack community. A sweet face, holding the most thoughtful note, stopped me in my tracks - literally. Purity and kindness shined through the eyes on the screen. I could not move on. I was touched… deeply impacted. I immediately set out to learn about this special girl and the mom who was sharing her story.
As a parent of a child who has also been diagnosed with an incredibly rare, incurable health condition, I sensed a kindred spirit in Jeannie. Sarah’s condition is clearly evident on the outside for everyone to see (and possibly misunderstand); while my daughter’s condition is hidden on the inside for no one to see (which can also prompt misunderstanding). There is nothing like watching your child struggle without any ability to mitigate their challenges. Our hearts grieve for the “uncomplicated,” “perfect” lives we dreamed for our girls. Yet, God’s grace has been poured out abundantly upon Jeannie and her precious gift, Sarah, as it has on mine. God has a unique call and purpose for each and every life, with unfathomable beauty to behold if we are willing to look beyond the surface.
We will all encounter grief at some point in our lives, but sometimes, we just need to be reminded that we are not alone in our struggles. There is companionship for the journey.
THE POWER OF STORY WHEN WE MOVE FROM GRIEF TO GRACE - JEANNIE EWING
The most profound and poignant turning point in my understanding of grief occurred when our youngest daughter Sarah was born in March, 2013. My pregnancy had been healthy, and I enjoyed it at every turning point. I had no suspicions of our daughter being anyone other than the perfectly imagined baby girl I had conjured in my mind. I fantasized about our two girls growing up with an idyllic sisterhood, one for which I had always longed as a child and yet one that never materialized for me.
But my triumphant joy quickly soured once my family doctor announced that a cesarean section was necessary for her birth. I had been in labor nearly twenty-four hours at the time and was exhausted, emotionally drained, and yet absolutely stricken with a paralytic fright of a c-section. It was the most dreaded fear I faced up to that point in my life. In that moment I felt God had abandoned me, but still I mustered a way to pray for help.
It was an interior illumination in the midst of the darkest of moments. My body was no longer my own; I was strapped to a table with my arms secured, and I was completely numb from the waist down. Voluntary movement of my lower extremities was an impossibility. I recall thinking to myself in between tears, It is as if I am in the position for crucifixion. So I wept privately.
Suddenly, however, my entire being was flooded with peace following my quick cry for help. My fear was transformed into a splendorous peace, a peace that transcends all human understanding, in this mysterious waiting and dramatic turning point of events.
No one knew my prayer, except God. I told not a soul, not even my husband, Ben. When the on-call obstetrician delivered Sarah, the room fell silent as she heartily cried to announce her entrance into this world. I was relieved to hear that her lungs were strong, but I saw the concern on Ben’s face as I was being stitched up post-operation.
There has never been a moment before or since in my life when I was rendered completely helpless. I couldn’t even see my own daughter. I couldn’t touch her or hold her, yet my heart ached to understand what was happening.
Ben gently told me, “Her hands look like the fingers are fused together, and there’s something wrong with her forehead.” I sobbed. He hastily added with his ever-present optimism, “But I’m sure it’s just because you had such a hard delivery. Maybe Sarah’s facial features will soften after a while.”
My maternal instinct knew this wasn’t the case, and yet through my tears of uncertainty and unknowing, this interior peace remained unfazed within my heart. Grace carried me through those initial days while I was convalescing in the hospital, because I saw Sarah’s (perceived) birth defects, and yet I loved her. Ben and I wept together as the pediatrician shared her suspicions of a diagnosis of a rare genetic condition called Apert Syndrome.
When Ben Googled it, we cried harder – a lifetime of corrective surgeries and a deformed face? This was our – and Sarah’s – future?
Upon arriving home, we were thrust into a world we neither desired nor expected: crisis management. Not only were we adjusting to adding a newborn to our family and I was recovering from a major surgery, but we were suddenly making frantic phone calls and diagnostic appointments multiple times per day.
We had minimal time to process this emotional rollercoaster. We had entered survival mode and were determined to understand Sarah’s diagnosis and prognosis. It was all that mattered, in addition to helping our older daughter, Felicity, adjust to having a baby sister in the house.
The first two weeks were a blur, and yet I was enshrouded in a particular darkness in which nothing made sense, and all I could do was ask God all of the questions we ask when someone dies: Why? Why did this happen to me, to our family? Why Sarah? Why can’t we just have a normal life like everyone else?
I haplessly and wearily dragged myself to my two-week postpartum appointment with the on-call obstetrician who had delivered Sarah – the second time in my life I had ever seen the woman. The appointment, however, uplifted and comforted me while oddly did not remove my unbearable agony. Dr. Annan told me that the delivery experience with Sarah was unforgettable to her. She was amazed at how flawlessly the cesarean happened, as if it were performed with textbook precision. She marveled at how, despite Sarah’s condition, she never needed to go to the NICU. But most notably, Dr. Annan told me she felt the hand of God deliver Sarah.
“It was as if something took over my hands as I was delivering Sarah from your womb. Someone took over. It felt like God’s hand delivered your baby, not mine. I will never forget that.”
Through tears mixed with bewilderment and appreciation, I smiled and thanked her. She continued, “Everything that happened in that operating room was miraculous. Every member of the medical staff who was present in that room remarked at how there seemed to be this incredible light in the room, a supernatural light. And we all noticed how you and your husband responded to Sarah. We agreed that you both were either Christians or in denial.”
I didn’t quite know how to respond to these comments at the time, because I was overwhelmed with conflicting emotions. But Dr. Annan spoke to me with confidence, with certainty. She did not waver in her belief that God was present and that the event was miraculous.
“Your daughter is a special child of God,” she concluded as we parted ways and I reiterated my gratitude to her.
Grief suddenly became an acute possibility to me. I realized that my internal and external manifestations of emotional peaks and periods of sadness mingled with hope were actually the complexity of grief. And the grief over losing the daughter I thought we would have suddenly morphed into the relief that, though Sarah was different and would always be different, she was still very much alive and such a happy little girl.
So I mourned my dreams, my expectations, and my hopes for a time. I permitted myself to encounter the process of grieving without censorship, and yet it was a lonely journey. It was often perplexing and grievous to navigate, difficult to explain and multifaceted in its manifestations.
That was twelve years ago, and I can’t say that grief ever leaves a person once it strikes the heart with its sorrow. What I can say is that it changes us if we are willing to listen to its guidance, take heed, and follow its direction. There is wisdom in grief. Grief draws us away from the quest for perfection and toward an acceptance of our humanity, that each of us is broken and hurting, and therefore we need one another. We need to hold each other’s hands, lift each other up, and walk together in order to find our strength to carry on.
Have you ever struggled with disappointment or grief when life didn’t turn out the way you had planned? How have you seen grief transform in to grace in your own life?
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This story is an adaptation from Jeannie’s book, From Grief to Grace, originally published in 2015.
Jeannie Ewing is a published author with a background in school counseling who writes and speaks about grief in motherhood, reclamation of one’s identity in midlife, existential ambivalence, giving ourselves permission to be human, and holding space for our tender needs. She can be found on her website or on Substack.
This is an incredible story; both heartbreaking, and encouraging. What a testament to God's grace to meet us in the valleys, and to lead us through by His own hand.
This had my in tears. Thank you for sharing! 💞