A note from the editor: Jacqueline would like to take this opportunity to publicly thank a number of managers here at CSC who have supported her through the difficulties of raising a child with severe disabilities while working full time. They are Piero Pavone, Ted Reinhardt, and Kathy Lavigne. To them, Jacqueline extends a sincere thank you for understanding her need for a flexible work arrangement.
For those of us with children, watching them grow and learn is one of the most rewarding experiences of our lives. Whether it’s the first time they roll over, eat solids, take those first wobbly steps on their own, or finally say “mama” and “dada,” we celebrate every milestone and look forward to the next one. It’s easy to take these moments for granted simply because they are expected as part of a child’s typical development process. But for parents like Jacqueline Burke, a Senior Advisor with the Information Management Services sector, her experience has been anything but typical.
Fourteen years ago Jacqueline gave birth to her daughter, Bronwyn. Bronwyn is a bright and beautiful girl with a beaming smile. She’s happy, energetic, loves school and is a social butterfly. Bronwyn also has Angelman Syndrome, a neuro-genetic disorder that causes intellectual and developmental delay, seizures, jerky movements, frequent laughter or smiling, and usually a happy demeanor. Bronwyn is non-verbal, cannot bathe or go to washroom on her own, has trouble walking, and requires help to eat. She was diagnosed at 18 months old.
“We went through test after test to find out what was going on with Bronwyn,” says Jacqueline. “It wasn’t until we met with a specialist who looked at her and knew what she had right away. He said that during his close to forty years in medicine, he had only met two children with Angelman Syndrome.”
Angelman Syndrome is caused by the deletion or inactivation of genes on the maternally inherited chromosome 15. It occurs in one person per approximately 25,000 people and is often misdiagnosed as cerebral palsy, autism, or other childhood disorders. There is no cure. For Jacqueline, a mother of one already and a career-driven individual, Bronwyn’s diagnosis brought her world to a crashing halt.
“Suddenly it was all about Bronwyn,” she says. “I immersed myself in caring for her while also trying to maintain a home, a job, and care for my other daughter. It was overwhelming but I loved her and I wanted to do everything I could for her.”
Though Jacqueline is no longer married to Bronwyn’s father, they share responsibility for their daughter’s care along with help from their older daughter Brooke and two caregivers. This gives Jacqueline the opportunity to rest, enjoy her personal hobbies such as playing the guitar and singing at a local pub, and recuperate from the physical and mental toll that caring for a child with disabilities can take on her. She is also involved in giving back to her community through the United Way’s Government of Canada Workplace Charitable Campaign (GCWCC) – something near and dear to her heart.
Not only is Jacqueline an active volunteer with the campaign, but she personally donates money every year to the Canadian Angelman Syndrome Society (CASS), a not-for-profit organization that provides support to people with Angelman Syndrome, their families and caregivers through education and social support.
“There are no words to express how important this organization is to families in a similar situation,” says Jacqueline. “One of the best things about the GCWCC is that you can choose where your dollars go.”
Jacqueline is passionate about her role in this campaign and the impact that every employee who chooses to donate can have on a cause that is important to them. She asks that everyone take the opportunity to research possible organizations they would like to support in their communities and do so through the GCWCC this fall.
As for Bronwyn, she just started high school. She is a vibrant member of the school community, loves helping the teachers, and waves to everyone she sees in the hallway. She will likely move into a group home facility in the coming years, a place where she can grow into adulthood and receive the care she requires. Though this will be a difficult transition for Jacqueline, she knows it will be best for Bronwyn and her needs.
When asked to reflect back on the day of Bronwyn’s diagnosis and the years since, Jacqueline is strikingly positive and optimistic.
“Bronwyn is a blessing and has grounded me,” she says. “Before her I was career-driven and always focused on the next best thing. She taught me to slow down, to be patient, and to appreciate what truly matters in life.
“No one stands up at the podium of your funeral and talks about how great of a worker you were. They talk about who you loved and were loved by. They talk about the kind of person you were. That is what I’m focused on now. Family is everything and they will always come first, no matter what.”
Merci de partager. Ça aide à mettre les choses en perspective... // Thank you for sharing. It helps put things into perspective...
Thank you for the positive feedback that I have received. I am encouraged and I know there are others going through similar situations. Those caring for aging parents, children with special needs or other situations. We have to have a heart. J