Our third child, Pearl Joy Brown, was born shortly after midnight on July 27, 2012, following a pregnancy wrought with heartache and hope. She was diagnosed with alobar holoprocensephaly during a 20-week ultrasound. My wife, Ruth, and I were advised to induce labor, say goodbye and try again.
It was a belittling conversation, trying to convince the doctor that if Pearl was already alive but having trouble, then we had no interest in taking her away from the provision of Ruth’s womb. We knew what would happen if we did.
She was being sustained in there, and God was still knitting her together. It seemed cruel to take away the very system that helped her broken body do what it was incapable of doing on its own.
I’ve often wondered, if God had not written certain truths on our hearts long ago, would we have chosen life for Pearl? Honestly, I do not know. It’s daunting to be given a diagnosis that is not compatible with life, and everything seems hopeless. We fallen people have a long history of lacking hope and perspective, even when lives are at stake.
I suppose that makes it more important that we speak the gospel with compassion and understanding to one another and a world that desperately needs hope. Apart from Christ, our decisions default in directions that end in death. That should further invigorate us to shout from the rooftops what we know is true about every human life.
Dignity and purpose
As rattling as those initial appointments were, we remained confident God was executing a plan for Pearl written before the foundation of the world. I’d spent years reading on God’s goodness and sovereignty over suffering and disability. We were aware on the deepest possible level that He was working. I see it now as divinely orchestrated groundwork for the season God was preparing.
The primary reason to carry Pearl to term was not for her sake, but because we ought not interrupt the Master Creator while He is at work. It had nothing to do with some utilitarian prospect of a child who may be the next president or Mother Teresa, and everything to do with abiding and participating.
Potential for societal contribution, skill or productivity is hardly a reason to choose life. Those defenses can damage and dehumanize children who didn’t make it to term or live with severe disabilities.
We knew if we proclaimed God knit Pearl’s siblings together in Ruth’s womb – Brennan and Abigail – we had to say He was doing the same for her. He hadn’t stepped out for a break, or left her development to forces of nature and happenstance. This was God’s handiwork.
God gave Pearl an inverted nose on purpose. He gave her three kissable lips on purpose. He took away her vision, her hearing, her speaking and even her ability to intentionally move any part of her body, all on purpose. He lovingly gave her a tiny, hollow, single hemisphere of a brain at the tip of her brain stem.
He was calling us to trust Him. Although He didn’t necessarily call Pearl’s disability good, He was certainly working it all together for our good and His glory.
Sober and sustaining joy
We assumed the only two options would be miraculous healing or certain death. The doctors expected death in the womb, during delivery or within moments of birth. We prayed for a miracle, but with each new and more devastating ultrasound, we expected the doctors to be correct in their predictions.
I never truly considered that God had written a third way. I saw other families out and about, caring for their child with special needs, and I remember how badly I wanted what they had. I pleaded with God to give us the difficult life, rather than take Pearl’s.
I longed for the privilege of pushing around a wheelchair with an oxygen tank strapped to the side, but I had no idea what I was asking. If I had known how hard it would be, without grasping how rich life would be, perhaps I wouldn’t have pleaded Pearl’s case as vigorously. How grateful I am that God said yes.
The diagnosis “not compatible with life” changed everything about prenatal planning. We met with the palliative care team to discuss what it may be like when the coroner came to collect Pearl’s body from the delivery room. I met with funeral home staff, and we bought nothing that parents typically purchase when preparing for a newborn.
There were days Ruth dreaded going out, even to the grocery store, as typical questions and assumptions from well-meaning strangers can prove crushing in these situations. No one assumes the child you’re carrying has a terminal diagnosis.
But truly, it wasn’t all heartbreak. The way our community rallied was a sight to behold. I could talk for hours about the way they carried us: how our pastor’s wife joined us for extended ultrasounds; how friends paid our bills so I could quit a job that required travel; how for months our church cooked meals or cried in our living room, sharing how God was changing them through Pearl; how friends held a benefit concert before Pearl was even born to celebrate the life we were already living with her; and how they bought us a minivan, because our tiny sedan couldn’t hold all of her medical equipment.
Every time our family sat down for a meal, we were keenly aware Pearl was there. Certainly, that’s always true when you dine with a pregnant woman, but the awareness of such things became incredibly sharp. After being told she would likely not survive beyond her time in Ruth’s body, Pearl’s presence became tangible in a way we didn’t know to experience with Brennan and Abigail.
Ruth and I grabbed each other by the hand, scooped the older kids into our arms, and jumped headlong into the deep end of life. We were unaware of just how deep the water was, but felt that if we only waded where we could touch bottom, we would do everyone a grave disservice. God was inviting us in to change us. Abiding seemed like the only appropriate response.
What a sad mistake it would be to go through hard seasons with eyes closed and ears covered, chanting false platitudes and waiting for the storms to pass. We could avoid a world of pain, but in doing so, we’d miss out on everything else – especially the main thing, that God promised to be near the brokenhearted.
It is better to have His presence through tremendous heartache than frivolity in spiritual oblivion. We should run to where it hurts, to where our hearts break, and perhaps encourage our children to do the same. God promised to be in those places. I’m often more aware of His presence in the children’s intensive care unit than I am at the church carnival. Surely, He is in both places, but my heart is more acutely tuned to him during the seasons of suffering and confusion.
Tagging along, saddled on the back of the presence of Christ, is a disproportionate amount of joy, though not always a celebratory one. It is a sober and deeply sustaining joy.
If you have someone like Pearl in your community, scoot your chair as close as possible. For her sake, yes, as you likely have a gift that will help her on her way, but also for your own sake and the glory of the One whose image we all bear. If you know where suffering is happening around you, run to it. God is near, He is moving, and you have a place.
Blessings and burdens
Pearl has now been with us for five-and-a-half years. Honestly, the last few months have been extremely difficult. Recent complications aren’t the same seizure and respiratory problems she’s known. They are different, and we suspect, as do the doctors, that her body is growing weary. She doesn’t seem to be standing in line for a miraculous turnaround. Her best day will likely be our worst, but this looks to be the next chapter for our family.
Pearl cannot hustle or chase her dreams. She isn’t having her best life now. She can’t step into any sort of destiny, follow her passions or live adventurously. She hasn’t a clue what it means to try harder.
She was given these afflictions by the loving hand of a Creator, who knows her intimately and crafted Pearl for His glory and her good. The promises made to her will, in large part, not be fulfilled until after her final breath. He carries her as she bears His image. And she, like us, is completely helpless otherwise.
If the theology you teach or the banner you wave cannot honestly be preached to Pearl in her current state, then it is probably not true. At the very least, perhaps, you should hold it loosely.
Pearl takes a disproportionate amount of resources from most everyone in her life, but the good news, the great news, is that we all draw from the King’s coffers. It is impossible for us to exhaust what He has purposed, and we view such things as stewardship rather than ownership.
Pearl does not belong to us. Pearl is God’s. We are nonetheless charged with trying our best to do right by her, but it is freeing to realize her life doesn’t hang on our medical decisions. With everything, we are merely stewards, not owners, and I doubt God is upset or caught off guard when His people steward His resources to care for people like Pearl.
Folks remind us rather frequently that she is a blessing, not a burden. I get what they’re saying, but every one of us is a burden in some ways. We are all a blessing and burden, and that’s OK. Life, by design, is replete with give and take.
“Chicken Soup for the Soul” sentimentalities do not add dignity to Pearl, and overcompensations can hide Pearl’s innate and divinely portioned dignity. We are all gifts, given by God to one another. We are all needy.
I leave you with a quote from Allen Levi’s book, The Last Sweet Mile. Upon hearing of his brother’s terminal cancer diagnosis, Allen pressed pause on every endeavor in life, wiped his schedule and devoted himself to walking his brother through his last season of life.
He writes, “And yet, in the midst of it, I have sensed the quiet, humble, liberating invitation to an un-heroic life. Liberating because it might just free me to genuinely love people – individual souls up close, rather than big causes from a distance – and emancipate me from a slavish dependence on the praise and attention of others for some sense of validation.
“The vocabulary for my present season of life is hardly glamorous. Passionate, extreme, crazy, radical – these words don’t fit very well. Tedious, confined, tired, unnoticed (but also, joyful, restful, real) – those are the words that more honestly describe the landscape of my life these days. And unless I am sadly mistaken, those same words might well apply to the most significant of our human endeavors and to the most valued of human relationships.”
I think he’s right. Such liberation is one of the greatest gifts people like Pearl are able to give their communities, if they are open to receiving it.
(EDITOR’S NOTE – Eric Brown is a photographer based in Nashville, Tenn. This post is adapted from a presentation at the 2018 Evangelicals for Life Conference in Washington, D.C., co-hosted by the Ethics & Religious Liberty Commission and Focus on the Family. Used by permission.)
Watch Eric’s talk at the 2018 Evangelicals for Life Conference below.