Sometimes Love breaks through in unexpected ways to offer wisdom and to remind us that we are always accompanied by invisible goodness. On a crisp October day, God burst forth, gifting us with a new word. Here is how it happened and what it means for us.

Our family recently loaned our barn to Well for the Journey to host a program to honor the earth with sacred drumming and dance. With other deadlines pending, I skipped the workshop but was delighted to hear the rhythmic drumming from a hundred yards away. At one point, it sounded like hearts beating together, echoing across the land.

My dear soul friend, Maggie, was attending, so I snuck in during their lunch hour for a quick hug and check-in. When I saw Maggie’s puffy, downcast eyes, I knew something was wrong. “What has happened,” I asked?

Tears welled up in Maggie’s eyes as she stood just outside the barn door describing concern for her beloved granddaughter. Little Lucy, now five years old, was born with STXBP1 encephalopathy, a rare genetic neurological disorder that is caused by a mutation of the STXBP1 gene. The condition results in severe intellectual disabilities, motor and behavioral impairments, and an unpredictable array of seizures. There are no known treatments or cures. I am among countless souls who have been praying for Lucy for years.

Maggie explained that she had spent five hours the previous day on a video call with other families whose loved ones have STXBP1. It was encouraging in that the call was with leaders from the FDA who were considering investing funds into research to treat and cure those with this neurological condition. It was discouraging, however, and heart-wrenching to listen to the families’ stories: the regressions, the day-to-day challenges, the shortened life expectancy, and the long-term implications for Lucy and others like Lucy. It was an exhausting, emotional day, followed by a teary, sleepless, night.

It is important to note that Lucy’s family remains deeply grounded in hope, the kind of hope that has real muscles. Day in and day out, they are striving for new treatments, therapies, and a cure. Lucy’s Dad, Ben Prosser, PhD, is an expert in cardiac molecular biology at Penn Medicine, who following Lucy’s diagnosis, shifted his focus to developing new therapies for STXBP1. Meanwhile, Lucy’s mom, Erin, is a talented marketing professional who shares Lucy’s story powerfully through pictures and words. Between the two of them, they are devoted to raising awareness, hope, and funding for all the children and families impacted by STXBP1. Miraculously, an anonymous donor recently gave $25 million to Penn Medicine and Children’s Hospital of Philadelphia for research in genetic therapies for neurodevelopmental disorders such as STXBP1. Lucy’s dad will be the director of the new center devoted to research. Remarkable progress has been made since Lucy was born.

Even with all the hope, hearing the heartbreaking stories and challenges brought the fears, concern, and sadness to the surface.

“It was just so hard, Mabeth.” Maggie lamented.

I responded, “It sounds just brutal.”

She nodded, tears streaming down her cheeks, and blurted out, “It was just BREAUTIFUL!”

Wide-eyed, we looked at each other in shock. Where did that come from? It was the PERFECT word. Breautiful!

We took turns repeating the word. Breautiful, breautiful, breautiful. Then, we burst out laughing. Laughing because we knew that word was gifted to us from beyond. Laughing because we knew we were not alone. Laughing because God knew just what we needed. Laughing at the audacity of the experience.

A few days later, standing outside my door beholding the sunrise and the clouds painted in brilliant pinks and lavenders, I offered prayers for those embroiled in the horror of war in the Middle East, Ukraine, and beyond. I reflected on how so much of life is both beautiful and brutal; breautiful.

My friend, the exquisite poet Rosemerry Wahtola Trommer, awakens us to breautiful writing about the paradox of emotions after her beloved 17-year-old son, Finn, took his life. Her book, All the Honey, contains a grace-filled assortment of fierce, tender poems including one titled “For When People Ask.” In it she describes her desire for a word that means “devastated and stunned with joy.” She concludes with these profound words:

The heart understands swirl,
how the churning of opposite feelings
weaves through us like an insistent breeze
leads us wordlessly deeper into ourselves,
blesses us with paradox
so we might walk more openly
into this world so rife with devastation,
this world so ripe with joy.

Perhaps it is a life lesson to learn how to hold the beautiful and the brutal together: the joy and sorrow, the laughter and the tears, and the hope and the despair. Each of us can name and claim the breautiful in our lives. Perhaps this is how Love breaks through, opening, expanding, and caressing our hearts. Perhaps this is how the light gets in. It’s breautiful.

Much love, Mabeth

To read Rosemerry’s poem in its entirety, visit ahundredfallingveils.com/2022/03/13/for-when-people-ask/