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Grief, healing and one photographer's final family portraits

Parents love pictures of their baby. That’s why we don’t complain, at least not to their faces, when they take over Facebook and fill up our email.

But when your baby’s life is cut short, those photographs can take on a whole new significance.

 This is the story of two moms, and how these final family portraits are helping them heal after the loss of a child.

These days, Sara Joy has more happy moments than sad ones.

You know that cliché about somebody lighting up a room? Sara actually does. 

She has huge blue eyes and this big, awesome laugh. She's the girl who was friends with everybody in high school.

These days, you get the sense she’s the mom other moms hope they bump into at the playground, when she's running around after her two-year-old twins, Maggie and Van. 

But just a few years ago, she was in what felt to her like the saddest place on earth: the neonatal intensive care unit of Beaumont Children’s Hospital, watching her newborn son, Joel, hooked up to beeping life-support machines.

This was the last place she and her husband expected to be. “I had this blissfully happy pregnancy and delivered a full-term baby,” says Joy. 

During labor, Joel’s heartbeat looked fine.  

During labor, Joel's heartbeat seemed fine. But as soon as he was born, doctors realized he wasn't breathing.

His heart slowed during contractions, but then it would pick right back up. 

Yet when Joel was born, he wasn’t breathing.

Doctors said it was hypoxia: his brain had been oxygen-deprived for too long.

He was as good as gone.

The nurses told Joy that once they took Joel off life support, he might have a minute or two with them before he passed. 

But his heart kept beating for 45 more minutes. 

“He had the toughest little heart. Oh my god, he just kept trucking,” says Joy. 

"That’s how tough he was. I’m like, he died because he was tough. Ask for help, kid!” she laughs wistfully. 

“If his heart had decelerated during birth, they would have done a C-section.  We would have been out of there. He would have been fine. But his little ticker kept going, even when he was in trouble. Just like it did when he died.”

Credit Kate Wells / Michigan Radio
Michigan Radio
Sara Joy holds Monkey, the stuffed animal her husband gave their infant son, Joel. Monkey comes with the family on road trips, and makes regular appearances in family photos.

In the days before Joel died, the nurses came to Joy with an unusual question: would you like a photographer to take pictures of you and your baby?

“I’m watching him die, and this stranger comes in. I could not care less about you and your camera," Joy recalls.

"I said, 'I don’t know that I’m ever going to want to look at these pictures. I may find them repulsive and disgusting. But if I ever want to look at them, this is my only chance. This is it. This is the end.'”

And that’s how Sara Joy met Monni Must, a photographer from Sylvan Lake.

Must is famous with the Beaumont nurses for taking intimate, warm shots of mama and child.

"I said, 'I don't know that I'm ever going to want to look at these pictures ... But if I ever want to look at them, this is my only chance. This is it.'"

Must says part of that comes from photographing every single inch of those babies. 

“Their hands and their feet and their tushies!” she laughs. “You know, that you can actually feel and touch that baby with your eyes.”

There’s a reason Must is so gifted at capturing what a grieving parent feels - the love, the sorrow, the tenderness.

Her daughter, Miya, took her own life at age 28. 

This was about six months before Must walked into Joy’s room.

She says it is expressly because of Miya that she now takes these photos for families.

Because like them, she’s trying to hold on to the memory of her child. 

“I needed to know that I wouldn’t forget little things about my Miya. The way that she sounded and the way that she smelled and the way that she looked. And that’s what they gave to me.

Credit Kate Wells / Michigan Radio
Michigan Radio
Must holds a portrait of her daughter, Miya. Miya took her own life at age 28, just a few months before Must met Sara Joy.

The byproduct was, I did heal. And I continue to heal. I can talk about her without sobbing. I can laugh about her and I can smile now.”

Joy is healing too, slowly.

What helps, she says, is making baby Joel a part of daily family life. 

On his birthday, she bakes a rainbow cake. On the anniversary of his death, she releases balloons. She and the twins also bring cookies to the Beaumont nursing staff.

 The pictures that Must took are everywhere in her family's house.

“When you walk into the house, first thing you see is that image of his face. Because, my kids come running up to you. Van and Maggie will come running up to you and tell you everything they did that day: ‘I woke up, and mommy let me have a popsicle,’ you know. But Joel doesn’t get to do that. So it’s my job, as his mom, to make him a part of things.”

"It's my job, as (Joel's) mom, to make him a part of things.”

Today, Joy sits beside Must on the living room couch.

They've become friends, two mom who contantly swap Miya and Joel stories. They move so easily between laughing, then crying, then laughing again. 

For Must, everything Joy feels is familiar. “Sarah could not save him,” she says. “But she could save his memory.”

Joy says right now, her twins are just two-years-old.

They don't really get that they had an older sibling who died.

But thanks to Must, Joy has the portraits of Joel.

And when the twins are ready, she says, those photos will let her introduce Maggie and Van to their brother.

Kate Wells is a Peabody Award-winning journalist currently covering public health. She was a 2023 Pulitzer Prize finalist for her abortion coverage.
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