Lily Bell: Worthy of Love

I remember the first time I saw Allyson. I honestly was not looking forward to meeting Scott’s six-foot-tall, gorgeous, supermodel-turned-interior-designer girlfriend. He had told us that he had finally met “the one” and needed to know what we thought. 

She was not at all what I expected. She was a perfect vision of grace and beauty as she walked toward us, but then she caught her size-eleven flip-flop in the wooden deck, tripped, and landed on her blessed assurance. I secretly thought, “How in the world did this girl make it down the runway in Milan?” But she got those long legs upright and started to laugh. I knew from that moment she was “the one.” 

From the beginning, I was drawn to Allyson’s gentle and quiet spirit. She listened more than she spoke, worked hard but expected no recognition, and most importantly, loved dessert.  Allyson was authentic. Over the years, our friendship became an anchor which held one another steady and accountable, yet at the same time gave us the freedom to speak truth in love without ever needing to mince words or filter motives. Our strong foundation, rooted in faith, grounded and prepared us for the storms ahead.

About ten years ago, we had the joy of being pregnant at the same time. Allyson and Scott were expecting their first child, and we were expecting our third son. Silas was our Thanksgiving baby, and Lily Isabella surprised us all by arriving one month early. She was precious. But it did not take long before Allyson starting noticing differences between Silas and Lily. Lily could not latch on, suckle while breastfeeding, or drink from a bottle. Whatever they got down, she would spit up. Her body was rigid and could not mold into the curves of Allyson’s body as she held her. There seemed to be little movement with her arms and legs, and she cried all the time. For almost four months, Scott and Allyson consulted with doctors in Florida, Mississippi, and Alabama. Some said she was a nervous new mother and was probably causing her baby to be nervous too. They blamed Allyson for not feeding Lily enough and her failing to thrive. All along, Allyson knew something was not right, so they put their hurt aside and kept searching for a way to help Lily.  

I will never forget the call we received from Scott to share the results of the MRI. The doctors discovered bilateral scarring on Lily’s brain which they believed was caused by a stroke in-utero during the end of the second trimester, resulting in cerebral palsy.  The report gave them an answer, just not the one they had hoped for. Experts prepared them for the worst. Lily most likely would never eat, drink, crawl, walk, sit, stand, or be able to do much without the help of others. The diagnosis was devastating. Yet somehow, courage and strength rose up inside Scott and Allyson, and they did not allow Lily’s diagnosis to become her prognosis. They knew that Lily’s life had a purpose, and she was worthy of love.

The past ten years have not been easy. Most days have been overloaded with school, physical therapy, speech therapy, occupational therapy, and endless trips to UAB to cast Lily’s legs for braces, measure for hand splints, inject Botox in her neck and hands to ease the dystonia, x-ray her spine and hips, and feed her “tummy water” and medicine through her G-tube which was surgically placed in her stomach. Scott and Allyson have spent hours filling out paperwork, making phone calls, and fighting for more inclusive coverage for special needs children from insurance companies and lawmakers. They also traveled to Duke University to participate in a clinical trial using Lily’s own stem cells which were extracted from her umbilical cord at birth. This motivated them to establish the Lily Bell Hope Foundation to assist other families who hope to collect and store their newborn’s cord blood which could potentially save lives and cure disease.   

When Lily was three, Allyson moved to Birmingham to work with a teacher who could help Lily thrive, not just survive.  In the depths of my heart, I knew this was the support Lily needed, but I was so sad my best friend was moving away. Commuting back home on weekends for three years was exhausting. Allyson and Scott sacrificed without complaint or asking for help. Family and friends helped to make meals, run errands, or care for Lily, but I felt I needed to help more. Sadly, during this time, Allyson’s mother, Lala, was diagnosed with terminal ovarian cancer. Now, it was even more important to find a way to help my best friend cope and heal.

Lily Bell: Worthy of Love was birthed out of that desire to help and honor Allyson’s mother. It was important to write the story in a way that children of all ages could understand.  During my quiet time, I would watch a father and mother dove outside my window. They would meticulously gather the broken twigs and crumpled leaves which had fallen to the ground to build their nest, gently lay their eggs, and hide them under the shadow of their wings. From three little eggs emerged three little biddies. How beautiful it was to witness the doves as they fed, groomed, nurtured, protected, and encouraged their biddies to spread their wings and fly. It was a picture of Lily, a story of beauty found in brokenness. 

Lily Bell: Worthy of Love is a story of hope. Lily Bell discovered that she could do all she dreamed of but just in a different way with the help of her friends and family. We are all created for a special purpose to fulfill a unique plan for our lives. We are all worthy of love.