Living with Loss - Stella Verbena
Stella Verbena always prayed to the Virgin Mary, so when her first child was born in 1973, she chose a name akin to her faith.
She named her daughter Anne Marie, after Saint Anne, the Blessed Virgin's mother.
Little did Verbena know she would rely heavily on faith in a few short years, when her daughter died as a toddler.
"I was blessed with an angel, and I had her for a little while," said Verbena of West Leechburg, who helps grieving parents some 30 years later.
"They say there are angels on earth. We don't know who they are or where they are: She was mine."
Anne Marie was born with an inherited condition called Sjogren-Larsson syndrome, often characterized by premature birth, rigid muscles, stunted development and mild retardation.
"It was a shock, and we had no idea what was wrong with her before she was born," said Verbena, describing a newborn that weighed just over 3 pounds.
Although many children with Sjogren-Larsson live into their early 20s, Anne Marie died from surgery complications shortly before age 4.
She often chewed on a tiny giraffe, Verbena recalled, showing the beloved toy her daughter's tiny hand could hold. And Anne Marie never learned to talk, but she could make blowing sounds to signal she loved her grandpa's harmonica.
"She got her messages across easily," said Verbena.
"She would laugh. She would giggle. She was so full of life."
Initially after her daughter's death, Verbena escaped into books.
"I really don't remember the content of most of the books I read," she recalled, telling how she and her husband Albert seemed only to coexist in the house.
Even though future children had a 25 to 50 percent chance of having Sjogren-Larsson, Verbena became pregnant.
"I wanted another baby," she said. "My husband was very nervous. I put it in God's hands."
Anne Marie died in January 1977. Verbena gave birth to her daughter, Dayna, in 1979. Her son, Michael, was born in 1981. Neither was born with Sjogren-Larsson.Even though Dayna and Michael helped restore a sense of family, the loss was ever-present. The feeling intensified when Verbena's brother-in-law died prematurely of cancer.It was then she was introduced to the concept of grief support groups, eventually playing the role of leader."I felt I had something to give," she said."When I lost Anne Marie, I didn't know there were support groups out there. My family was always there," she added. "(But) people don't always have a strong family base anymore. The support group becomes your family," she said.As co-facilitator of the monthly Parent-to-Parent grief support group at the VNA Hospice in Butler Township, Verbena said the sessions still dredge up her feelings of loss."This isn't a one-time experience," she explained. "This is the rest of your life."It doesn't go away. They're still your child. Just because they're not with you now, you're still their parent."As part of the group, Verbena said parents might come only once or attend for many successive months. People can share their stories — or not. Kleenex is always on the table.Sharing her experience seems to ease her own grief — to provide a sense of purpose."I don't want anyone to feel alone and not connected," she said. "As a parent you connect: There's a connection with anyone who's lost a child whether they're 80 or 20 or 16."According to Verbena, helping others is a payback for the blessings she received as Anne Marie's mom."I'm at peace now," she said."That doesn't mean I don't feel the loss and the pain at times — but I'm able to look at the blessings I had with her."I wonder why (God) picked me to be her mom. What did he see in me that he gave me Anne Marie? I thank God for every moment I had with Anne Marie. I try to share that with others and let them know they're not alone and that there is a tomorrow. ... It may not come for a long time."
