21: Abbie’s Serene Smile

21: Abbie’s Serene Smile

From Chicken Soup for the Soul: Miracles Happen

Abbie’s Serene Smile

Peace on the outside comes from knowing God on the inside.

~Author Unknown

“We’ve done all we can and… Sarah, we don’t think she’ll survive the night,” my daughter’s neurosurgeon told me.

I froze.

The team created for my four-year-old Abigail, sat across from me, showered and well rested, fresh. They each had on dry-clean-only business attire under their ironed white doctor coats. I glanced at the pajama pants I had pulled on this morning—one of three pairs I’d brought. They were stiff from washing them the night before with hand soap in the small hospital sink and hanging them on the shower rod to dry. I was wearing my husband Ian’s T-shirt. It was two sizes too big but still smelled like his Axe body wash. I ran my hands through my greasy hair and spun my wedding ring on my slightly thinner finger, as I stared at the images of Abbie’s brain above the doctors. I felt defeated and scared, but looked down to meet each team member’s gaze, then boldly said, “I won’t accept that. Find someone that will save her.”

I walked out of the conference room and back to the unit where my baby’s lifeless body lay. I paused in her doorway and prayed, “Dear God, please don’t take her.” Gada, her nurse, occupied the recliner that had been my bed for weeks. She was reading Abbie the book she had earned for the spinal tap she didn’t know she’d had a week ago.

Gada handed me the book. “She didn’t wake up,” she said. “I’m sorry.” I nodded and waited for the door to click shut before I reached for the phone. I was relieved when Ian answered. I explained that Abbie had developed aseptic spinal meningitis. “She needs a shunt but they don’t think she would survive the surgery. All she does is stare.” After a moment of silence, he reminded me it was a three-hour drive and he was on his way. I didn’t tell him to drive carefully; I knew he wouldn’t.

Abbie’s room was still, nothing but the steady beat of monitors tracking her every breath. I sat on the edge of her bed, picked up her limp hand and reminded myself that I would not cry. “I’m not ready to let her go,” I said. I closed my eyes and thought about how we got to this point.

Three months prior, I took Abbie to the children’s hospital in Pittsburgh because she had a migraine and 105-degree fever for three days; something was wrong. I could still hear myself explaining over and over that she was walking with a wide base, like she was trying not to fall. The doctor diagnosed her with mono and told me I could take her home to rest. I initially accepted the diagnosis, but by the time I received her release papers, I knew something more was wrong. I insisted on additional testing. Abbie was admitted; four days and every test they could think of later, she was diagnosed with an infection at the base of her brain and severe Chiari malformation.

We met with Pittsburgh’s neurosurgery team and they told us that the bottom of Abbie’s cerebellum had grown out the bottom of her skull and was fusing to her spinal cord. They explained that, in her case, it restricted blood flow to her brain and that until surgery was performed, she couldn’t run and play, that she needed to lie still. They described it to us like this: Abbie’s spinal cord was a straw; at the point where the Chiari was located, it shrunk to the diameter of a coffee stirrer. She could have a stroke or worse, they said, fall asleep one night and just not wake up. We took her home and interviewed a few neurosurgeons, deciding that Dr. Raffel of Nationwide Children’s Hospital in Columbus, Ohio was the best man for the job. The date for surgery was set.

“Surgery was a success. The Chiari was very tight but back where it is supposed to be. Once she is settled in the ICU, a nurse will take you to her,” Dr Raffel stated, and I fought back the urge to hug him.

When we walked into the ICU room, my heart sank; she was asleep, an IV in each hand and one in her main artery. The next day she moved to the neurology unit. Ian headed home to help with our other two kids, Jacob and Mackenzie, and return to work. Two days later, it was time to reduce the morphine and get Abbie up. As the nurse and I helped her sit without straining her neck, her eyes rolled back. Her body went limp and started to shake as she fell back to the bed. I felt like everything was in slow motion. I was afraid to blink while I watched the nurses check my baby girl’s vitals. The downhill slope had begun. With each day she got weaker; she stayed asleep with no interest in anything. Five days turned into five weeks.

Minutes after Ian walked into Abbie’s room, Dr. Raffel joined us. The three of us sat in silence until Dr Raffel said, “I made a few calls. My mentor suggested I give her this.” He held up a vial. “He said that twenty-seven years ago he saw scans similar to Abbie’s. All he had was this and massive steroids.”

Ian and I reached for the authorization form and watched as Gada added this vial of medication to Abbie’s IV cocktail. I’m not sure if any of us slept that night but in the morning Abbie’s vital signs improved. Every hour, medication went into her IV. Two days later Abbie sat. She smiled and said, “Hey Mum, when did you get here?” Then she asked for a brownie. Ian headed home and the meds continued. Abbie improved. A week later, Dr. Raffel loaded her up with meds before they unhooked her IV and Abbie waved bye to the line of staff that had come to see her off. That three-hour drive felt like five; we wanted to get home and I needed to hug the kids I hadn’t seen in almost six weeks.

Three days later, I was reading my kids their bedtime story when Abbie stopped me and said, “Mum? Where did Jesus go?” I smiled and said, “Jesus never goes anywhere. He lives in your heart. He is always with you.” She pointed to the ceiling on her left and said, “But he was right there, and now he’s gone.” I was stunned silent for a minute. Then I asked, “Well, he is still with you. Is that what you have been looking at… Jesus?” She smiled big and said, “Oh yes. He kept saying, you will be okay my child.”

Today, Abbie is a strong, healthy eight-year-old. She has a serene smile and peaceful way about her that only someone touched by God can have. I know that Jesus held my little girl when I couldn’t.

~Sarah Mitchell

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