ARUN RATH, HOST:
Our next story is about profound loss - the loss of a child and how parents grieve in ways that are deeply personal. So personal that what comforts one parent, may disturb another. Here's reporter Ari Daniel.
ARI DANIEL, BYLINE: Within two days of moving into her new home in southwestern Connecticut, Floribeth Roman filled the place with photos.
FLORIBETH ROMAN: So I have our wedding portrait. I have pictures of my boys on the opposite walls.
DANIEL: I counted over 80 photographs on display on the first floor alone.
F. ROMAN: And I have pictures of Isabella and the family.
DANIEL: Isabella, or Bella for short, is Roman's only daughter. She was born in 2005 - a beautiful little girl with brown eyes.
ISABELLA ROMAN: You see her at her christening. You see her at three years of age as her brothers kiss her - one on each side. You see daddy squeezing her.
DANIEL: When Bella turned five she was diagnosed with Tay-Sachs - a rare genetic disorder that gradually destroys the nervous system. It was at that point that Roman, her husband, her sons and Bella of course all began attending the annual Tay-Sachs family conference.
F. ROMAN: When you go to the conferences there's a photographer. Then within weeks you get this beautiful album.
DANIEL: And album created by photographer Lynette Johnson that's filled with family portraits. Johnson donates her time each year to this conference and the families who attend.
LYNETTE JOHNSON: We are there to beautifully record, as best we can, a life that may very well be short.
DANIEL: Johnson founded a nonprofit in Seattle called Soulumination. She and a few dozen volunteer photographers take pictures of families with infants or kids who are stillborn or terminally ill. And there are similar organizations elsewhere in the U.S. and around the world. Today Johnson's team has worked with well over 2,000 families.
JOHNSON: We have this idea, I think, that only long lives are good. And I hope that through the photos we show that every life has so much beauty in it.
DANIEL: Johnson saw little Bella twice and took photos of her and her family both times. And Bella's mom Floribeth Roman loves those portraits.
F. ROMAN: Lynette has a way of taking pictures. She captures the moment. Natural moments.
DANIEL: Roman became so enamored of the photography that when Bella passed away in 2012 at age six, she decided to hire a local photographer to document the funeral.
F. ROMAN: I want to show you almost 400 portraits from the funeral.
DANIEL: You're showing me one now of her lying there in the casket with the flower headband and of simple dress.
F. ROMAN: And she just looks like she's sleeping.
DANIEL: Roman says she flips through these photos often. They help her grieve. And they reassure her that she was a good mother to Bella.
F. ROMAN: I don't want to forget the good things in my life. And so my daughter's death hurts me but she doesn't hurt me.
DANIEL: One of the 400 photographs is different from the rest. It's of Roman's husband, Edwin. He's glaring at the camera. His wife had arranged to have the photographer at Bella's funeral without him knowing. And he was furious. Edwin grew up in Colombia where things are different.
EDWIN ROMAN: We were not going around taking pictures of the person who just passed away. For us it was something that has to be respect at the moment.
DANIEL: It's not the sort of thing that you feel like you document.
E. ROMAN: No. It's a thing that you are going to remember.
MARIA TROZZI: Brief goes in different directions. What works for one may not work for another family member.
REPORTER: Maria Trozzi is based at the Boston University School of Medicine where she directs a national program for families facing stress or loss. She says she understands both impulses - the desire to photograph the funeral.
TROZZI: I think it's a way of holding on until they are prepared step-by-step to let go.
DANIEL: And the desire not to photograph it.
TROZZI: Of course I would honor the parent that says, my memory is in my heart and that's where it will stay.
DANIEL: Floribeth and Edwin Roman haven't changed their minds about whether it's okay to photograph a funeral. So they've agreed to disagree. She looks at the photos almost daily. He almost never. But for both of them, they're family. Bella included remains central. For NPR News I'm Ari Daniel.