. . . the kingdom of heaven is like unto a merchant man, seeking goodly pearls: Who, when he had found one pearl of great price, went and sold all that he had, and bought it.—Mt 13:45-46
Misery loves company. A cynic might say that’s why I became obsessed with Eric Brown’s social media posts. Both the Browns and the Hennesseys chose to continue pregnancies despite alarming prenatal diagnoses. But while my daily concerns revolve around teaching life and academic skills to my 12-year-old daughter with Down syndrome—who otherwise lives a full and happy life—the Browns have hovered in survival mode for nearly six years.
In 2012, Eric and his wife Ruth, then the parents of two young children, learned at a 20-week-ultrasound that their third child had alobar holoprosencephaly, a condition in which the brain fails to develop into right and left hemispheres. Only three percent of similarly diagnosed babies survive to birth, and most of those die shortly thereafter.
Naturally, doctors urged the Browns to terminate the pregnancy. They refused. They fretted over the possibility that their baby would die in utero. But as Ruth came to term, they prepared to meet their daughter. They hoped for a few minutes with her. Perhaps an hour. They named her Pearl Joy.
Pearl fought hard and was eventually cleared to leave the hospital. Continuing to defy the odds, she lived to be five-and-a-half years old; she passed away on March 29th of this year after a particularly difficult stretch of ill health.
Since the earliest days of the pregnancy, Eric, a photographer by trade, has chronicled his family’s journey. Every day or so, he shares a stunning photo, often in black and white, of the Browns in an ordinary scene from daily life: Ruth on the phone with the insurance company, Pearl’s medical bed decorated with Christmas ornaments, the siblings on the couch watching a movie. Below the photo, in a few crisp sentences, Eric links the mundane and occasionally morbid details of family life with the magnificent. Eric rarely uses the word “pro-life” when writing about Pearl, and his work is blissfully free of politics and moralizing. Yet nothing ever seems as current, prescient, or apt as a new post by Eric Brown.
Pearl, in her short life, never walked, spoke, laughed, or did anything, really, that you or I would expect a small child to do. Breathing through a respirator and fed through a tube, she was what is called “medically fragile.” She required round-the-clock care. Whether she recognized her family was a mystery to the Browns. She spent most of her time propped up in a medical bed or chair. Yet, she profoundly changed many lives, including those of the Browns, their immediate community in Nashville, Tennessee, and a larger virtual community that became, as I did, hooked on the details that Eric shared almost daily on Instagram.
Eric’s posts infuse me with hope and joy, not because misery loves company or because I compare my life favorably to the Browns. No, there is deep relief in reading, in graphic detail, how a life of incredible compromise, sacrifice, and frustration can be one of great reward. Eric’s posts remind me that a life spent in service to another life—particularly a fragile one—is the definition of contentment.
From a recent post, written after Pearl’s passing:
She is not here and she was not on the porch tonight. I do feel her in these photos, though. I see the continuous playing out of who she helped us all to become. I see her in the intimacy and the sweetness that we share. I see her in our family’s contentment in, or maybe a better phrase would be “preference for,” simpler joys and quiet lives. She brought into our home a value system that I didn’t even know to want. She taught us to lean on and enjoy each other in ways I’m not sure we would’ve learned otherwise.
In words and pictures, Eric captures why his daughter’s life, like all lives, has worth. Eric never sugarcoats facts or minimizes the difficulties of living with and caring for Pearl. His posts are raw. Eric and Ruth cry tears of frustration, exhaustion, and fear. They rage. They doubt. They surrender.
Some in Eric’s position would resort to moralizing or to lashing out. His posts have none of that. They are also devoid of complaint, which is remarkable, considering the hardship and pain he and his family have endured these last few years. He never asks for help or money, yet it is obvious the Browns often need both. Telling the truth, and nothing more, is so hard for so many of us. We embellish. We minimize. We curate. We push secret agendas. Eric never did—or does—any of that.
Of course, Eric has a sense of humor, which helps draw us in and digest some of the unimaginable pain. Here’s a post from this past Mother’s Day:
Mother’s Day is a weird day. For some, their life has been lived thus far without too much trouble and it’s just the day they know they’ll go to Golden Corral after church and bring flowers for their mom. But for others . . . may I even say most others . . . there are feelings that pop up for a number of different reasons. Mothers, motherhood, the lack of mothers and motherhood, etc. . . . all of it involves feelings and experiences that cut to the core of who we are. It’s a mixed bag, this holiday. Brokenness tends to get magnified and felt deeply on these days. And this one is obviously weird in our home. Maybe not as weird as you’d imagine, but Pearl is heavy on our hearts and in our conversations. So it goes, I suppose. Golden Corral kind of sucks anyway.
So, yes, if I’m honest, Eric Brown’s Instagram feed helps keep my tendency toward self-pity at bay. The delightful details, the quick wit, the love that seems to fill and spill out of the Brown household—these things keep my spirits up. Selfishly, I crave my daily Brown.
But Eric has lost a child. He and his family are grieving. Whatever’s going on at my house seems trivial by comparison. I’m sure Eric and Ruth would gladly take on my troubles and petty concerns if it meant having their daughter back. They gave up a lot for Pearl, but I know they would agree that she was worth the price.