For Desiree and Alex and their two children, life changed when their twin girls arrived early at 25 weeks, each weighing just over a pound. Skyla and Jayde were born three years ago on Father's Day. They spent their first 104 days in the Neonatal Intensive Care Unit at BC Children's Hospital. The girls were diagnosed with cerebral palsy (CP).
Desiree, Alex, Aodhan and Taiya spent their twin's first summer living in a trailer in the hospital parking lot to be close to the twins. "We tried to find a balance because at the time there was no child care offered for the older siblings," Desiree explains. "It's a difficult life for everyone at first - but we are here!" Desiree says with a smile. And "here" means home with plenty of help from loving grandparents, therapists, doctors, nurses, support workers and a community which is growing its understanding of cerebral palsy.
The girls are now three. They attend preschool and take naps, and enjoy family time just like their peers. Jayde loves molding playdough with her mom and listening to music, and Skyla loves shaving cream painting with her dad and outside time on the trampoline.
When the family is out and about, going to many appointments, running errands or driving to school, they get some stares - and sometimes the family feels under the spotlight, judged, and misunderstood. Desiree and Alex want the community to know they welcome questions and interaction. "Abbotsford is a great community and I want more people to understand just what cerebral palsy is," says Desiree.
The CP Association of BC states, cerebral palsy is a term used to describe a group of disorders affecting body movement and muscle coordination. Cerebral Palsy is typically caused by brain damage before or during a child's birth. Characteristics of CP may include:
lack of coordination
muscle tightness or spasm
difficulty with gross &/or fine motor skills
For Desiree and Alex it was a crash course in medical and therapeutic terminology for the family who knew very little about cerebal palsy at the time. Alex points out that the main day-to-day focus is all about the health of the twins. "Everything else revolves around the girls and how they are doing. If they have a respiratory problem or eating issues, it takes precedence over everything. Even a cold virus can be fatal to them". Adding to the complexity are equipment and supplies necessary to support the girls' growth and development. Skya and Jayde require wheelchairs and feeding chairs, orthodics and adaptive equipment, with the costs continuing to grow and often a huge strain on the family. This is where charitable organizations such as the Variety Club, generous individuals and companies like CKNW can really make a difference. Approaching organizations for support has become a part-time job for Alex - on top of his full time position in a steel mill in Surrey. With each stage of the girls' development they require new equipment and therapies, and the costs will continue to grow. Desiree and Alex are already looking at the need for an accessible mini-van, an elevator in their home and more.
The loving and supportive couple wants other families with special needs to know that in the beginning everything seems impossible, but there are always people there to help. "Where would we be without the Fraser Valley Child Development Centre?" Alex asks. "Being able to ask for direction every step of the way is so important," says Desiree. She admits she had a really hard time at the beginning. "I couldn't face it at first," she shares. "Now I am more confident". Our Infant Development Consultant once told us, "This is not a sprint, it's a marathon," and that's the way we have to look at it. You don't look down the road too far, you live day by day."
Today is World CP Day! Desiree and Alex have shared their daughters' story in support of raising awareness and understanding of CP. Wear green in support!
If you wish to learn more about CP and how you can support, visit BC Cerebal Palsy Association
Special thanks to Cate Pederson (Twitter: @catepedersen) for your help with this story.