Eric Brown: My name is Eric Brown. I am a photographer, and I am married to my wife, Ruth. We have three kids: Brennan, Abby, and we had a daughter named Pearl who passed away in 2018.
Ruth Brown: When it was time for the ultrasound at 20 weeks, we basically thought we were going to show up to figure out if we were having a little boy or a little girl. The technician started giving us weird vibes, but we still just thought that she couldn’t get a good angle. The baby wasn’t moving the way that she wanted to get all of the pictures. So, at first, she sent us on to the midwife and told us we’d probably need more pictures later on. But of course, the techs aren’t allowed to tell you anything.
The first inkling that we got that something was actually wrong was when the midwife came into the room to talk to us after the ultrasound. She barely got in the door and just started weeping. She was like, “Things aren’t what we hoped they would be. Your baby girl is not developing well. And this is out of my realm. I need to send you to a specialist. He’ll give you more information.” She had to Google the name of the condition before she came in to talk to us; it’s not super common. It was the first that she had dealt with this specific condition. So she sent us on to a maternal-fetal medicine doctor, and he was anything but hopeful.
EB: She had a condition called Alobar holoprosencephaly, which, he said, was not compatible with life.
RB: Basically, it means that her brain wasn’t forming properly. There was a lot more fluid and less brain matter inside her head.
EB: He advised us to head across the hallway and terminate the pregnancy and go home and be thankful we had two other kids.
RB: And while we were very much happy with Brennan and Abby, Pearl was also our kid, and our job was to protect her. And so that’s what we did.
EB: It seemed like he was just presenting us with, “This is the obvious thing that you do. There’s really not anything other than to head across the hallway and terminate.”
RB: We said that we couldn’t do that. We had just seen our baby girl moving on the ultrasound. She waved. I could not force her out of my body at that point and give up. I couldn’t do it. To us, the only option was to support our daughter as long as we could.
I remember having a conversation about naming her [while] sitting in the car with Eric. The name Pearl conjures so many different images of beauty coming out of something that’s not originally beautiful. And her middle name is Joy, and that was a prayer.
EB: I think about the Bible story of the pearl of great value. It’s a simple name. I liked that, and I thought it reflects who she was.
RB: Once we found out that Pearl’s time with us would likely be limited, and might be limited to only living inside my belly, then we started acknowledging her presence a little bit more than we had with Brendan and Abby during their pregnancies.
EB: We wanted to count everything and make sure that everything mattered and that her siblings wouldn’t make the mistake of thinking that Pearl was the sister that they almost had. She definitely was the sister that they already had.
RB: We ended up needing to induce labor about three weeks early. The plan was to have as calm and natural of a delivery as possible so that we could enjoy whatever time that we had with Pearl. Walking into the hospital, knowing that she was about to be born and not knowing what was going to come next, not knowing if Brennan and Abby were going to have a chance to meet her, not knowing if the photographer would get there in time to capture pictures of her with us, was a scary day.
EB: Pearl came out fighting. And we decided we would join her in the fight. The whole idea was to always follow Pearl’s lead, and she came out fighting. So we joined her in that fight.
RB: Once she was born, we were able to see that she had a cleft as well. She was a little bit smaller than the other kids her age, but the main thing was that her brain wasn’t functioning the way that most people’s brains do. And that affected the way that she would move her body. That affected the way that she breathed. It affected everything about her life.
When she was in what would typically be like the toddler years, she would kind of babble and wave her arms at us. It was sweet. She had bright red hair, and so one Halloween I dressed her up as Pippi Longstocking with the colored leggings and those sweet little pigtails poking out of the sides. Brennan and Abby would make a little pallet on the floor, and they would read books and sing to her. Abby would help with Pearl’s therapy exercises.
Many days, it was the five of us hanging out inside of our house, just being together. [They weren’t] the normal things that other families did, but we loved it. We loved spending time together.
EB: The morning that Pearl passed, we didn’t sit in her room and sing hymns to her. We weren’t quoting Scripture. I don’t know about [everyone else], but I wasn’t praying. It seemed like the four of us laid in her bed, completely lost and shell-shocked, for hours and hours and hours, because the process of turning off a ventilator for such a strong kid like Pearl was really, really drawn out.
RB: It was right at the beginning of Lent. So we spent that season waiting for a new Easter and feeling lament heavier than we ever had before.
EB: I’ve never felt a darkness like the darkness that I felt coming in waves that morning.
RB: And she passed away right before Easter.
EB: Some days the hardest part is just her not being here. Some days the hardest part is wanting to be close to her body and to spend time physically with her.
RB: I do have joy in the world, but I probably look a little bit less happy most days. And that’s an OK difference.
EB: Within the community of people saying choose life for kids like Pearl, for children with special needs and poor prenatal diagnoses, I feel like we are very equipped for how to choose life and how to say yes, how to advocate for life, and how to support. But if we’re going to advocate that children like her be carried to term, we’ve got to know that these children oftentimes are not long for this world. And, I could be wrong, but I think we need to be equally as invigorated with learning how and helping each other know how to say goodbye to these children.
We knew Pearl was never going to turn into a grandmother at some point or grow into old age. She was going to have a short life. But when the grief hit, I was not prepared. I felt my faith sliding through my fingers like sand. And it wasn’t like I was trying to deconstruct or explore leaving the faith, as if I wanted nothing to do with God. I wanted him, if for no other reason [than] I could find no other way forward. My friends couldn’t help me, therapists couldn’t help me, pastors couldn’t help me. Nobody could help me. So I knew that the only way forward was going to be Christ. And that’s only because he’s promised to finish whatever good work he had started in me.
And though I could see nothing at the time, I have a really long history of seeing God already having begun work in me. That was it. That was all I had. But it was dying and collapsing, and it seemed like the worst possible end to Pearl’s story:
Oh yeah, and then Dad’s faith just disappeared. It felt crazy to me, and I couldn’t make sense of it. I couldn’t see straight. I behaved in the way that you would think anybody who couldn’t see straight would behave. And then one day—I don’t know why he chose to start moving when he did—God just started to turn the lights back on.
It was a split second before it was too late. He waited till then to move. And then it felt like he rushed in and started turning all the lights in the room on. Stop, stop, stop, stop. Enough of the darkness. Enough of the sin. Enough of the unbelief. Enough of all of this. I never left. I was here the whole time, and I didn’t expect anything from you. I didn’t expect you to do this well. I didn’t expect you to do this missionally. I didn’t expect anything. All I want to do is to be your Dad.
That’s all. That’s all he wanted. And I’m grateful he moved when he did.
RB: It’s OK to really, really miss my daughter. And being upset or sad or emotional about that doesn’t mean that I don’t know that God’s going to make it all OK again. It’s just not going to feel OK tomorrow or next week. But I have peace in the thought that it’ll be OK in a thousand years, and the time that I will have spent missing her will be just this little blip in this timeline of what God’s been doing. That’ll make it OK.
EB: I feel like I had a really robust theology, and I had a really big view of God. I could clearly articulate the relationship between his sovereignty and suffering. None of that was enough to carry me through that dark night of the soul. None of that. None of my big perspective on him, none of my right theologies. But I have a God who was bigger than my right theologies then, and I have a God who was bigger than my wrong perspectives during that first season of losing Pearl. He was just so much bigger than even I know now. And that gives me so much confidence. He’s good.
View “The Pearl Brown Story” at https://erlc.com/about/pearlbrown/
