our daughter has changed
the way we look at life and
has taught me patience
The other night, my daughter, Jaina, and I were snuggling on the couch. Jaina
is four years old, and she moved her leg for the very first time. This was a big first
step in her world.
When I was 20 weeks pregnant, Jaina had an anoxic brain stem injury, which was
diagnosed as severe cerebral palsy when she was born prematurely. She spent the first three-and-
a-half months of her life at the Stollery Children’s Hospital in Edmonton. Jaina’s injury affects her
ability to breathe and eat, and she also has hearing and vision impairments. We have home care
support in our home, as Jaina is on a ventilator to help her breathe.
When Jaina was a newborn, we were told she would likely never walk, talk or live a normal life.
My husband and I had many questions, including: What is ‘normal?’ Where does this leave us?
Where does our family fit in? Are there any other families like ours?
We may not be the typical family I dreamed of, but we are a special family and we do belong.
Before Jaina, I had no idea the special needs world even existed. As a result, my life has
expanded — I continue to work part time as a professional engineer and I also volunteer for the
Stollery’s Family Centred Care Network.
Jaina is a beautiful little girl, and her normal includes: living with her family in St. Albert, being
a big sister, having a pretty pink wheelchair and a bedroom decorated with purple butterflies. She
loves her little sister, Addison, her caregiver, Melissa, and attending music classes with me. And she
loves going for walks in her specialized stroller and cuddling with her daddy.
Jaina has changed the way we look at life. She has taught me patience. I know now that health is
fragile, life is short and it can change in an instant. I’ve learned to take the time to slow
down and look at the little things. The little things for Jaina are her big things — like
subtle eye movements, lightly squeezing my hand and moving her leg for the very
first time. — Christina Herbers