Calgary family learned much in 39-day life of their daughter
Lucy-Rose was greatly loved all 39 days she was here
Lucy-Rose Kmiec lived for only 39 days. But her parents, Calgary Shepard Conservative MP Tom Kmiec and Evangeline, say their little girl’s life has had a profound effect on her family and the community.
“It’s strange,” said Tom from the family’s Auburn Bay home in Calgary’s deep southeast, “but she taught us a lot.”
Born on July 5 at Peter Lougheed Hospital, Tom and Evangeline were told just one week before her birth that she might have a hole in her heart that was fixable. Unlike their previous three children, who all were born late and naturally, Lucy-Rose was born six weeks early and by C-section.
As soon as she was born, Evangeline knew something was even more seriously wrong when doctors whisked her baby away for treatment.
“It was torture not being able to be with my baby,” said Evangeline as Maximillion, 10 and Jolie, 7, played quietly in the kitchen filled with flower arrangements while three-year-old Enoch slept soundly on the family room sofa.
Tom followed their daughter to the neonatal intensive care unit at Alberta Children’s Hospital and learned that Lucy-Rose was in serious trouble with trisomy 13, a chromosomal abnormality that at its most severe can lead to children being born with no eyes, to less severe deformations like those of Lucy-Rose, who looked so beautiful, but had a three-centimetre hole at the top of her skull that exposed her brain.
“We were utterly devastated to learn about what was wrong,” said Evangeline, 35. “All of our pre-birth dreams for her were destroyed by this diagnosis. They told us not to Google trisomy 13, but we did, of course, and we were horrified at what we saw and read.”
When the doctors finally explained everything to them on July 9, four days after their daughter’s birth, grief flooded over the young couple.
“I couldn’t stop crying that whole time,” Evangeline said.
“I felt like someone just killed a part of me. They were really professional about it and very kind and compassionate about it, but you can’t really sugar-coat a diagnosis like that.”
For the first 34 days of her life, Lucy-Rose lived and was loved in three different neonatal units before the couple brought her home to spend time with her siblings.
“The diagnosis was brutal,” Evangeline said. “But from a faith perspective, we realized that we don’t get to control her diagnosis ... I just had to submit to God’s will.”
Tom says the love the family received has been awe-inspiring.
Every day, breakfast, lunch and dinner was provided by the Auburn Bay Angels, volunteers who showered the family with love and have become dear friends. The family’s church, First Alliance, stocked their freezer with casseroles, prayed and supported the family, as well as provided child care.
“You know, in the 39 days that our daughter was alive we tried to give her as much love as we could because we didn’t know how long she was going to live,” Evangeline said.
“And our neighbours, and community and church, gave us so much love. Even though we were so overwhelmed with pain, they overwhelmed us with love.”
The death of Lucy-Rose received nationwide attention after Tom revealed the news about their special daughter on his public Facebook page.
Cards and condolences poured in from across the country, including from former prime minister Stephen Harper, whom Tom interned for in Ottawa many years ago while Evangeline interned for Jason Kenney, which is how they met.
“We know it’s not goodbye forever, it’s just goodbye for now,” Tom said. “That gives us comfort knowing that we’re going to see her again, this is not the end. Everybody dies. It’s the great equalizer.”
Tom says he often acknowledges the accomplishments of his constituents with certificates and letters.
During her life, Lucy-Rose taught them that “even though she was disabled and she probably would not have been able to walk and she’d never get a job or accomplish great things like everybody else values, she did plenty.
“The day that she died, Max was the one taking care of her and Jolie was using the tube feed. Two months ago, I wouldn’t have trusted them with anything,” added Tom, with Evangeline chuckling at the comment.
“They really, really matured so quickly and we didn’t have to teach them anything. They just picked it up,” Tom said.
“And the love that they gave her,” Evangeline added. “The amount of kisses that she got and hugs and encouraging words for her to continue fighting. They would tell her, ‘We love you, we’re proud of you, you’re doing so well.’”
Pastors James Paton and Ray Matheson came to the family home on Aug. 12 to anoint LucyRose, who was named after the couple’s paternal grandmothers, with oil and to pray over her and dedicate her to God.
The next day Lucy-Rose died. “Suddenly she made this weird sound, like her last breath and all three of us just looked at her. We didn’t think that sound could come out of a baby. I picked her up and she was completely limp. She wasn’t breathing.
“I panicked,” Evangeline said. “I started doing CPR and Maximillion called 911. Within minutes, police, paramedics and firefighters arrived.
“It was chaos, but when she passed it was peaceful and she was surrounded by love.”
Ironically, Tom has been working on legislation, Bill 399: The Fairness for Persons with Disabilities Act, that is designed to leave more money in the pockets of Canadians with disabilities, to cover medical costs.
Because of Lucy-Rose, Tom has become even more aware of the costs associated with a specialneeds child — even one who lived just 39 days.
On Tuesday at 3 p.m., a memorial celebration for Lucy-Rose will be held at First Alliance Church, 12345 40 Street SE and the Kmiecs invite everyone to celebrate little Lucy-Rose’s short life of love so filled with vital lessons.
Our neighbours, and community and church, gave us so much love. Even though we were so overwhelmed with pain, they overwhelmed us with love.