When I write about my daughter, I often feel I need to bookend it with (but she didn’t die).

Still, within that parenthesis there is so much of death, I can never quite unpack it all even though years have passed, and frankly, it’s difficult to find where to dump such messy baggage. Little things pull me back to that hospital room, to that time and place, to the before and after of her brain stem mass.

I can hear the words again from the lips of the doctor, “There is no hope.”

I stare another time at the dangling stethoscope cord, snaking from his white-coat pocket. His somber words still hang in sterile hospital air. and I feel mommy terror fill my soul.

She was only 26 with two babies and a young, adoring husband. They huddled at the head of the bed, husband and wife, mommy and daddy.

“No hope” ricocheted off the marble walls.

My son-in-law wrapped broad arms around her, swallowing up her small body in big protection. Their baby cooed in the crook of her arm where he’d positioned her. Her big sister climbed over the white hump of her body, tangling tubes and setting off alarms.

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“Mom,” she hissed to me. Its familiarity the same as once upon a time when a little girl motioned and whispered, “Mom, I don’t like green beans,” or “Mom, I don’t want to go, can you say I can’t?”

I hurried to her side.

“When I’m gone, I want them to know my family too,” she fingered the edge of my shirt as I leaned close.

Speaking had become difficult. Breathing taxing. Moving almost stilled.

“I want them to know you and Dad.”

I wiped the drool from the corner of her mouth.

“My sisters, brother, their cousins too.”

I understood how important it was to her to stand in that gap.  

I nodded. Then I leaned all the way down. Put my face into the hospital pillow my cheek against her cheek and we wept.

But she didn’t die.

Life looks different than it did before our daughter’s long illness. Quadriplegia is a unique path with extraordinary blessing, but it is still quadriplegia. She handles it with Jesus and grace.

Although we learned a lot about death, it was a seed planted for germination while life lessons continue to sprout and grow.

Even in a cesspool of bereavement, we learn to live. In oceans of grief, grace overflows. It is indeed possible to smile through tears, laugh in sorrow, and hope for eternity. In an odd way, Scripture becomes more alive. Paul’s words, “for me to live is Christ and to die is gain,” take new meaning (Philippians 1:21).

Spiritual life fuels physical breath, and through it, we discover Who is greater than why.

It isn’t a unique club, near-death experiences happen daily, but it is a peculiar one. While we teetered on the edge of our daughter’s death, others whose children had died came around us. They held out hands from an uninviting shore we’d not yet reached. Their comfort felt therapeutic and terrifying, testimonies of never-healing, yet survival. Though our fingertips brushed, they drifted apart.

In the community of grievers, ours is unworthy of membership. Yet, life changed drastically after almost losing a daughter but not quite.

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Loss and gain, pain and sorrow need to be revisited at times. Before and after acknowledged. Within those pauses, we grasp again how deep is the mundane gift of daily life, and how tenuous and tender is breath itself.  

Today I stop and stand again in my memory in that space, to grieve over what is lost, feel guilty for what I have, and rest in thankfulness for all He gave.  

I’m snuggled into the cushions of a couch, my daughter’s next to me in a power chair. We marvel as we talk, that we can. I ask questions. She answers. We laugh, we love . . . because life must be embraced. I run my hand across her shoulder to touch her skin, to feel her bony shoulder, just to know she is still here.

Sylvia Schroeder

Sylvia Schroeder serves as Women’s Care Coordinator at Avant Ministries. Mom to four, grandma to 13, and wife to her one and only love, she enjoys writing about all of them. Find her blog at When the House is Quiet. Like her Facebook page or follow her on twitter.