UPDATE: On March 28, 2018, Pearl Joy passed away just a few months before her sixth birthday.
Eric Brown calls his family “ordinary.” However, most of us would disagree, because the strength, love and wisdom they have displayed in the last few years have been nothing short of extraordinary. Brown and his wife Ruth were parents to son Brennan and daughter Abigail when they learned they were expecting their third child. At their 20-week ultrasound, doctors found a concern and baby Pearl Joy was diagnosed with alobar holoprosencephaly – the most severe form of holoprosencephaly – a rare congenital brain malformation in which there is no separation of the cerebral hemispheres. It is considered a fatal condition and doctors advised abortion.
“[…] we were advised on that day [of the diagnosis] to induce labor, say goodbye and try again,” Brown said in a speech for Evangelicals for Life. “It was a belittling conversation trying to convince that doctor that if Pearl was alive, but she was having troubles, that we had no interest in taking her away from the provision that Ruth’s womb was giving. We knew very well what would happen if we did and there was no way that Pearl’s body had developed enough to survive outside of Ruth’s body. She was being sustained in there and God was still knitting her together and it seemed cruel to us to take away the very system that was helping her broken body do what it was incapable of doing on its own.”
Before long, people who have entered the valley of humility feel themselves back in the uplands of joy and commitment. They’ve thrown themselves into work, made new friends, & cultivated new loves. They realize, with a shock, that they’ve traveled a long way since the first days of their crucible. They turn around & see how much ground they have left behind. Such people don’t come out healed; they come out different. They find a vocation or calling. They commit themselves to some long obedience & dedicate themselves to some desperate lark that gives life purpose. -David Brooks (The Road to Character) We’ve come a long way, baby girl! #PearlhasHoPE #SpecialNeeds #Fujifilm #x100s
Doctors told the couple that Pearl would likely die in the womb, at birth, or shortly after birth. Most children with the condition die prenatally, and of those who make it to birth, only three percent survive it, according to Carter Centers for Brain Research in Holoprosencephaly and Related Malformations.
READ: Mom fighting cancer refuses abortion: “I had someone else’s life to care about”
“We knew that if we proclaimed that God had knit her siblings together in Ruth’s womb then we had to say that he was doing the same for Pearl,” said Brown. “It’s not as if He stepped out for a break or if He left her development to the forces of nature and happenstance while He carried on with other tasks. Our hearts were overflowing with the sense that this was God’s handiwork and I remember just how clear certain phrases from hymns and scriptures began resonating in a way they otherwise likely never would have.”
While the doctors’ outlooks seemed hopeless, God and Pearl had other plans. After her parents refused abortion, they moved forward with life, knowing that they and God loved this child as they did the others. Aware that they could lose her at any moment, they found themselves more aware of the otherwise inconsequential moments in life that usually went by nearly overlooked. Now, they were precious snapshots in time.
“Every time Ruth and I sat down for a meal together we were keenly aware that Pearl too was sitting down for the same meal,” said Brown. “Certainly that is always the case when you dine with a pregnant woman but the awareness of such things became incredibly sharp with Pearl. After being told that she would likely not be born alive and assuming that the only time we’d have with her was while she was in Ruth’s body, her presence became tangible in a way we did not know to experience with Brennan and Abigail.”
Pearl was born July 27, 2012. She had bright red hair and blue eyes and what her father called a “three lip smile.” Doctors told her parents she couldn’t hear or see and she would never be able to speak or walk. She had a single brain hemisphere at the tip of her brain stem. The prognosis was so grim that Pearl’s parents planned her funeral and spoke with palliative care. However, Pearl didn’t die as doctors had predicted. In fact, she lived outside of the womb for over five years. The Browns’ community rallied around them in support of this unexpected blessing, cooking meals and even purchasing a van for the family who were unprepared to bring their baby home. And though Pearl’s life was complicated as she and her family dealt with seizures, respiratory issues, a feeding tube, and other medical issues and scares, her life was also filled with love and joy.
Still photographs don’t always reveal the whole truth. It’s one of the greatest strengths and greatest weaknesses of photography. Sometimes, it’s beautiful to let the viewer interpret and perceive on their own. Other times, it can be intentionally misleading. This photo tells the reality of what bedtime stories usually sound like over here. Don’t push play if you’re in public without earbuds. #PearlHasHoPE #SpecialNeeds #Fujifilm #x100s #AudiblePhoto
“Pearl’s life has been an explosion of grace, detonated by God and our community sending waves of perspective resonating through a fall out zone I could have never planned,” explained Brown. “And I feel nothing but a sense of privilege and awe for Him choosing us to be her parents. “
READ: This mother found out her baby had a heart tumor – and she chose life
Life, he said shortly before Pearl died, “is wonderfully rich.”
Brown chronicled that rich life in a series of photographs and blog posts. He showed the ins and outs of their everyday lives – both the fun and the difficult, but always beautiful. Whether it was Abigail and Brennan playing guitar for Pearl or reading her a story, or the sleepless nights in the hospital or dealing with the troubles of blood draws and medical tests, Brown showed the world that all life has value and purpose.
“What an incredibly sad mistake it would be for us to go through the hard seasons of our lives with our eyes closed and our ears covered, chanting false platitudes to ourselves and waiting for the storms to pass,” he said. “Surely with that approach we could avoid a world of pain but in doing so we’d miss out on everything else in the process and especially the main thing as God has promised to be near to the broken hearted.”
He says that while Pearl couldn’t “chase her dreams” and wasn’t “having her best life now” she was a blessing and her life was a blessing. As they realized that her body was getting tired and that she may not have much time left, they did not regret for a single moment the time with her they had been given. No matter how difficult some of those moments may have been, they were all worth it. We are each a blessing and a burden, he said.
Pearl died March 29, 2018, leaving her family with a hole that can never be filled. Brown said his daughter taught him “the beauty in being weak.”
I’ve frequently said that anyone paying attention at all, should be able to notice that this entire time, I’ve been documenting and sharing a story about Ruth. There have been plenty of other leading roles involved, but at least from my perspective, it’s mostly been a story about her and about motherhood. I still believe that. Much was said over the years about how none of the photos had me in them. And that is mostly true… my job as a photographer wasn’t to include himself in the frames but to make it about the subjects and stories in front of the camera. Even still, I do see me in most of all of the photos. And as a father, that is more important. They aren’t photos of people as much as they are photos of feelings and of hearts. And I remember with most every photograph what the room felt like in that moment. Especially with this one, I knew in my gut that this sort of levity was not long for this world. I knew it would likely be among the last photos that would feel like this one does. 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.
“It is the better way to go through life. When you are weak, everyone puts their hand in the air and says, ‘I, too, am weak.’ And you end up with a wonderful community of people,” he told The Tennessean.
And while they miss their daughter, they know that her life and death were God’s will and they are grateful.
“Things didn’t go wrong,” he said. “God has designed Pearl the way He wanted, for His glory and our good. […] If there is a chance, you say yes to that chance. The only thing I know about parenting is that you say yes.”
I’m opting not to share much here, about the ways that the rest of my family is grieving. It’s not my story to tell, as I certainly wouldn’t want anyone else sharing their take on my grief. But for me, most everything about grieving makes me feel self absorbed in a way that borders on narcissism. I hate that. In trying to let grief happen, rather than trying to direct the process myself, it dominates everything. It seems the only options are to coddle it, or avoid it all together. And we in the west have a history of either acting as though our grief is an ultimate thing… that the world should revolve around ourselves, or as if it isn’t a factor at all… that we never doubt God, and that Satan is impotent. Like right after 9/11, when the president told us to keep shopping and to not let the terrorists win. But the truth of the matter, is that they got us. They won on that day, and for a season. And Pearl’s death too, has knocked us down and there’s no merit to acting otherwise. I didn’t expect to encounter this early on, the subtle assuming from others that we should move on, if only a little bit. No one intends it that condescendingly, but it comes through. And in an inexplicable way, it feels like she was just here, that it’s been hours rather than weeks. It feels like just yesterday, Ruth and I were bathing Pearl’s body one last time, and soaking in every line and curve to try and secure a mental map of what was where. I’m not trying to rush the grief process; nor am I trying to slow it down. I’m not trying to do much of anything about it, other than feeling what comes and trying to keep a healthy gauge on what the grief is doing. Living life hour by hour to try and stay between the lines. Each one of those hours feels different, and these days feel doubly long. We miss Pearl. We miss being able to climb in her bed and find comfort next to her in the midst of heartache. But I am happy for her. I’m glad that she is free from the body that constantly fought against her. And as much as folks like to think that bodies don’t matter, Pearl’s body did define her in many ways. Now that she is separated from it for awhile, she can be more clearly defined.