Lanee’s Legacy gives parents comfort

A mother’s memories of her infant son are held tight in a cardboard box. Wisps of platinum blond hair that never got a chance to grow longer than a few centimeters. A little brown bear too big for his tiny hands to clutch. A sky-blue outfit and blanket in which his final photos were taken.

When thoughts and prayers don’t help, Rayel Smith of Mesa pulls the pale blue box out of her bedroom closet, sometimes for a private peek, but often with her family as they remember a loved one who lived for just 48 hours.

Garrett Lynn Smith would have turned 3 this year, but a fatal placental abruption in what had otherwise been a healthy 34 weeks of pregnancy suddenly cut short Rayel’s joy of becoming a mom one more time.

Garrett survived in intensive care for only two days. But the box that went home with his mother from Mesa’s Banner Desert Medical Center has been her life support ever since — a way to remember her baby with a physical reminder that he too was her flesh and blood.

“This is all I have left, but I’m so grateful for it,” said Rayel, as she pulled out from the box tiny plaster hand and footprint molds, wrapped in crushed tissue paper, which have been opened and rewrapped “a million times.”

Losing their infants to stillbirth or soon after delivery is an experience many parents across the East Valley share every year. And, said San Tan Valley resident Becky Norris, the boxes are a comforting source during the hardest time of it all — when they have to leave the hospital without a baby in their arms.

Norris, 33, has donated about 400 such pink and blue boxes to Banner Desert Medical Center, ever since she lost her daughter, DeLanee, in 2004. She was 28 weeks pregnant at the time.

Early into her pregnancy, Becky learned her baby had little chance of surviving after being diagnosed with Dandy-Walker Cyst, a congenital brain malformation. She only got to spend three hours with DeLanee, bathing her, holding her, her entire family taking photos with her.

“The baby goes to the mortuary and you leave without your baby,” Becky said, her soft, gray eyes welling up with tears, as she recalled that January 2004 day. That’s when a leftover Christmas box, which the hospital staff filled with DeLanee’s belongings to take home, took on special meaning.

“I had that Christmas box on my lap which had everything. Every memory that was linked to her, was in that box,” Becky said, her voice cracking a bit even now, five years later.

VALIDATING A LIFE

Close to what would have been DeLanee’s first birthday, but with no party to plan and no invitations to send, Becky remembered how healing the box had been for her. So she decided to make 20 boxes for other parents who might need them. And the ritual has continued ever since.

Now, she’s part of a group of four, including Rayel and two other strangers who became friends after hearing Becky’s story. Together, the women want to expand this program into something bigger by starting a nonprofit organization. Through that, they hope to reach out to many more parents at hospitals statewide and ultimately even nationwide.

Each special box costs about $20 to fill up. There’s a metallic plated tiny footprint on the lid. Inside is a one-time-use camera for parents who may be unprepared and may not have a camera with them to take photos, a necklace with tiny footprints the size of a 10-week fetus, a CD with music to help through the grief, a packet of Forget-Me-Not flower seeds, a journal and pen, some candy, a small photo album ... and Kleenex.

The women are putting together a pancake breakfast and raffle in October to help pay for expenses, with plenty of local businesses pitching in already.

A Facebook page, “Lanee’s Legacy,” was started about four weeks ago and already has nearly 500 members.

Suzanne Helzer, a registered nurse who coordinates the pregnancy and infant loss program at Banner Desert, said Becky’s boxes have touched many parents’ hearts during some of their most difficult times. The hospital sees an average of 10 to 15 infant losses every month of the 500 or so deliveries.

According to the state health department, in 2008, spontaneous fetal losses at 28 or more weeks of gestation totaled 293 in Arizona. There were 339 infant deaths of those less than 7 days old.

Helzer said such losses are “very common,” but not talked about much.

“A lot of people don’t understand how to support grieving parents. They’re expected to move on, but that’s not easy,” Helzer said. “Becky making these boxes helps to validate there was a life. A presence there acts as a linking object connecting parents to their baby.”

Things like cameras are often what parents, unprepared in cases of emergency labor, don’t have with them. So having those in the boxes is very important, Helzer said.

“Parents are touched. They’re so appreciative. They’re surprised we’d do anything,” she added.

Chandler Regional Medical Center, which sees about 12 to 15 infant losses each month, also gives out similar boxes, said infant bereavement coordinator Vicki Vandenheuvel. The Chandler hospital also holds a memorial service each year for parents to remember their lost babies. Typically, Vandenheuvel said, about 150 people attend the event, which is scheduled this year for Oct. 15.

A BITTERSWEET RITUAL

When Rayel lost her baby, she had no idea that Becky, a childhood friend, would become even closer to her through this tragic bond they now share.

On hearing of Rayel’s loss, Becky visited her at home, armed with a blue box to offer as comfort. Unbeknownst to her, Rayel had already received one of Becky’s boxes at Banner Desert, where Garrett had been in intensive care.

Rayel said when she opened the door and saw the box in Becky’s hand, she “just about died.”

Through her blog and Facebook page, Becky’s heard from others who also received a box with a back that reads, “Made with Love by DeLanee’s mom.”

Like 27-year-old Mesa resident Kami Milliron, whose daughter, Elizabeth, was stillborn in January when Kami was eight months pregnant. She blogged about the box, which Becky chanced upon online.

“It touched me that she takes the time to do something like that,” Kami said. She keeps the box in her room with Elizabeth’s blanket, a certificate of how much she weighed (3 pounds 12 ounces) and cards from friends and family.

C.J. Bowles lived in Gilbert when she lost her son, Nathan, in April 2006. She described going through her box as “part of a bittersweet ritual that means so much to me.” So much so that if ever her house were on fire, her “Nathan Box” is the one item she’d take with her.

The boxes that have become DeLanee’s legacy have touched lives in other ways as well.

Last year, 30-year-old Gilbert resident Erika Wright, an employee at a Scrapbooks Etc. store, became curious while helping Becky pick out yards and yards of ribbon. When she asked what the ribbon was for, Becky explained and left a URL of her personal blog.

“I read the blog, cried, called my sister and told her, 'You have to read the blog.’ She cried, and so we thought we wanted to help,” Erika said.

Neither Erika, nor her sister, Heather Morrison, 33, also of Gilbert, have lost a child, but both were instantly empathetic to the cause and volunteered to help.

Becky’s thankful for their support. Without it, she believes her desire to expand this initiative might not have been possible.

Becoming a nonprofit would help give them the financial means to keep making the boxes by allowing them to accept tax-deductible donations.

But they realize not everyone will understand why a mother would want to hold on to such painful memories.

“People tell us, 'You’ll have other babies,’ or, 'Why would you want to hold on to something you didn’t even have for too long,’” Becky said. “Many people don’t understand it unless they go through something like this.”

Kami, Rayel and Becky also said it’s important for them to talk about their lost babies, and knowing they’re not the only one with a box is a source of strength.

“It’s a club you never want to be in — ever, ever — but it’s an amazing club to belong to, because you feel the strength and support,” Rayel said.

Added Becky: “Hopefully that’s what we can help other moms with, that somebody else has walked that road ... and survived.”

If you go

What: Pancake breakfast fundraiser for Lanee’s Legacy

When: 8 a.m. to 10 a.m. Oct. 10

Where: Desert Mountain Park, 22201 S. Hawes Road, Queen Creek

Cost: $5 per ticket or six for $25

Raffle tickets: $1 per ticket or six for $5

Information: laneeslegacy.blogspot.com or search for Lanee’s Legacy on www.facebook.com

Other events and resources:

• Infant Loss Memorial Day

When: 7 p.m. Oct. 15

Where: Chandler Regional Medical Center, 475 S. Dobson Road, Chandler

• Walk to Remember and Memorial Service

When: 9 a.m. Oct. 17

Where: St. Timothy’s Catholic Community church amphitheater, 1730 W. Guadalupe Road, Mesa

Information: (480) 813-0907

• Parent Support Group at Banner Desert Medical Center meets the first Monday of each month at 7 p.m. at 1400 S. Dobson Road, Mesa.

• Support for grieving families: www.missfoundation.org