Our ICU nurses, donned in red and green scrubs, smiled and cheered as we entered the hospital ICU. Angie, Jessie’s precious “angel nurse” had crocheted a colorful Christmas stocking blanket for our dying baby. For the first time since she was born, Jessie raised her tiny arm toward us as if to wave hello. I remembered another miracle baby born in a stable so long ago. This Christmas was bittersweet. Day after day, Roger and I made the trek to the hospital, never knowing if our daughter’s tiny heart would fail before we arrived.
Roger gleefully patted my burgeoning belly in anticipation for the birth of our first child. The nursery glowed with bubble-gum pink paint, the Christmas presents were bought and wrapped ahead of time. Caring for a newborn is an arduous job. My Mom and Dad flew from Dallas to Tucson to help with “rocking duty.”
But when I went into labor, Jessie’s fragile heart began to fail. Dr. Raphael performed an emergency C-section. Our kind obstetrician sadly shook his head when our little one emerged from my womb. Jessie was blue and limp, three pounds at best. All of a sudden, our tiny treasure drew a breath, coughed and rallied. Her heart muscle pumped through her brittle skeleton. I was still sedated when my husband Roger heard the grim news. “God,” he prayed, “I am your servant. Why us? Why is there a nursery full of healthy babies, some that were even unwanted, and mine is born to die?”
Later, Dr. Raphael gently clasped my hand and told me of Jessie’s fate. “Most Trisome 18 babies live only a week. She won’t last long. I’m so sorry!” Every part of her body created by her 18th chromosome was malformed. Her heart muscle was weak, her lungs were damaged, her little arms and legs were limp from lack of circulation. Roger placed her tiny form in my lap and we sobbed as we cradled her. Finally, we had to return her to Dr. Raphael. She was whisked away to intensive care. Jessica had to be fed with a gavage tube placed down her tiny throat because she was too weak to suck on a bottle. She lived in her “oxygen box” to make it easier to breathe.
I went home, devastated, and we waited for the grim news that Jessie didn’t survive the night. And waited. We doggedly drove twenty miles to the hospital-terrified we were seeing Jessie for the last time. But every day she rallied. After two weeks, doctors and medical students came to study her. No Trisome infant had ever survived this long.
The same supernatural power that formed Jesus in Mary’s womb sustained Jessie. God showed Himself mighty once again. The poet David penned these words in Psalm 139:
For you created my inmost being;
you knit me together in my mother’s womb.
Your eyes saw my unformed body;
all the days ordained for me were written in your book
before one of them came to be.
God knew Jessie’s future. No doctor could predict the impact her life would have. Answers to our prayers just kept coming. Jessie lived nine months longer than 99% of Trisome 18 babies.
At the end of December, we were able to take Jessie home. She was now a whopping five pounds. She never grew past that weight. I dressed her in ruffled doll clothes because baby PJ’s were too big for her delicate frame. She was too weak to cry, so she’d raise her tiny arms when she was hungry. We fed her formula through a gavage tube every two hours. Roger and I surveyed the colorful nursery where she slept, shell-shocked that our tiny girl was still with us.
As the days dragged on, we grew more and more exhausted. Roger kept up his pastoral duties and preached his socks off Sunday after Sunday. I taught piano to make ends meet. I kept Jessie in a bassinette next to my piano bench.
One cold Saturday night, Roger and I laid drained and discouraged in each other’s arms. The constant feedings left us sleep-deprived, and the stress of never knowing if she would be alive when we peered over her cradle left us frazzled and despondent. We prayed earnestly for strength.
As Roger said “amen,” we immediately heard a knock at the front door. Fourteen smiling church ladies filled our porch. Were they here to bring us goodies? No. They gave us the most incredible, selfless gift. Joy Artus grinned. “Roger and Julie,” she said. “We are the Mom Squad. Every night at ten o’clock, one of us will be at your door to stay up all night with Jessie so you can sleep.” We were speechless! Our families lived a thousand miles away, so we had no help with our ailing child.
Mom Squad ladies were doctors, nurses, university administrators, grandmothers, teachers…and in the nine months of Jessica’s life, they NEVER missed a night. When church members love you like that, they become your FAMILY. God had sent us our very own angels to comfort us in the darkness of our desperation.
Jessica Lynn Barrier went to be with Jesus in July. We kissed her cold little forehead and said, “Hello, Jessie. We’re your Mommy and Daddy. We can finally tell you how much we love you as you smile down on us from Jesus’ lap.” We wept at her homegoing. I still cry when I remember that first Christmas with her.
Thirty-three years later, with holiday lights twinkling, I tearfully put my pen to paper to write what I would say to Jessie today.
“Dear Jessie,
My precious little girl with Jesus, I can hardly remember how it felt to hold your delicate frame in my arms. I thought I would forget you, but you’re with me every day. There are so many questions I want to ask you as I look heavenward. Do you miss me? I wish I’d known you as a grown-up girl-my dearest confidant and friend.
The longer I live, the grayer the line between here and hereafter. There’s my indomitable father-full of faith and cheating death at least twice every year. Just when he thinks he’s headed toward Home, God turns him around, marches him back to us and tells him he still has more to do. No matter what disaster or physical challenge he faces, he simply finds another more creative way to express his love for you. The consummate artist, he finds beauty where others fail to look.
And then there’s your Daddy. His earthly heart may not be strong, but it beats with a passion and power that few men have. He always sees heaven before him, and he’s never been afraid to go there. But like the Good Shepherd, I think he is still here because he’s so good at taking care of everybody else.
Your sister Brianna has seemed to walk so precariously through this world, touching heaven and fighting for breath day in and day out. She spends her waking moments serving God tirelessly, but the more God uses her, the more she seems to suffer. But that doesn’t surprise you, does it, Jessie. I weep for her agony.
I wish you could have shared some face time with your baby sister Bronwyn while you were here. Although I know you watch her, her antics and her puppies must make you giggle. The pain she has suffered is the deepest and cruellest of all. Yet she sees the world most clearly and loves so honestly and deeply. Her pain has made her real. Her pain has made her strong.
Earth-dwellers live in a fierce battleground, and those who don’t see it are simply looking the other way. Suffering must look so differently to you from heaven’s parapet. Hannah Hurnard in Hind’s Feet on High Places wrote that her protagonist, little Much Afraid, could only reach the high places by grasping the hands of Sorrow and Suffering.
You see the glory side, don’t you Jessie? I
As I ponder life and death and love and such, I long to see through your eyes. What must it be like to look upon Jesus’ face every day? How wonderful must it be to never have unanswered questions, to fear nothing and no one?
At times, brief moments during my day, I catch a glimpse of that shining place where you live and feel oddly homesick. Save me a place by your side. I’ll see you soon. Merry Christmas.”