Vicki Biggar draws a string of “treasure beads” out of a cloth bag with the help of one of her twin daughters, Keira, who lays it on the floor.
It belongs to Vicki’s other daughter, Kaley. The hundreds of colourful beads along its considerable length represent a “poke,” blood test or medical procedure marking this eight-year-old child’s journey. The image is striking.
“It’s been a long, rough eight years of caring for her,” Vicki says.
Edmonton’s Stollery Children’s Hospital sponsors the Treasure Bead Program, Vicki explains. For every procedure a heart patient undergoes, they are given a distinct bead to add to the string. The beads form a chain that describes each heart patient’s unique journey, allowing families a way to talk about it.
“It’s not always easy to look at them,” she says, as her two girls play with the string on the floor. “This has been our life.”
During her pregnancy, doctors told Vicki and her husband, Brodie, that one of the twins had heart issues; it would be more challenging than that.
Kaley was born with Down syndrome, a severe heart defect and several other complications.
Her first two years of life were spent in the Alberta Children’s Hospital. She has had 36 major surgeries, and has a pacemaker, a feeding tube and an injection port for the blood transfusions she receives every four weeks to boost her immune system.
Biggar, who quit a job as an office manager to care for Kaley full time, says that while life has been difficult, she couldn’t imagine it without the inspiration her daughter brings.
I look at her and what she’s gone through, and I think, ‘I would have given up years ago.’ But not Kaley.
Vicki’s seen her daughter come out of heart surgery sitting up in bed with a smile on her face.
“She shows me what strength is really about.”
Kaley, despite her challenges, is a happy and playful child, and enjoys anything that involves climbing or listening to music.
She has had trouble talking clearly, but she can repeat words or phrases from songs as a way to communicate.
“When she heard Adele’s song Hello, she started saying hello to everybody.”
Keira is aware of her sister’s health needs, her mother says, because “as a family, we talk about it a lot.”
When asked what she likes most about her sister, Keira says: “Ummmm, she’s my best friend. She makes me happy – a lot.”
The sisters are inseparable, and attend Nose Creek Elementary. The school is the reason they moved to Airdrie from Calgary three years ago.
“We wanted to keep the girls together, and (Nose Creek) was able to do that,” says Vicki.
Brodie works in environmental monitoring and reporting and is often away, but Vicki says they agreed when the girls where born that they would make their family dynamics work.
“I won’t say it’s been easy, but we’re a strong couple.”
The two of them don’t get out much, but Vicki has a sister in Calgary who supports them. Respite services are limited in Airdrie, so the family utilizes one from Calgary.
“But it’s hard to get someone to come out here,” adds Vicki.
Kaley’s future holds more operations and more complications, says her mom.
“But we accept today, and just hope for tomorrow.”