Alejandra’s favourite sparkly t-shirt says it all. “Always Dream Big.” My six-year-old daughter and I do that every day, in ways most people take for granted. When you hear Alejandra talk about the roller coaster she went on this past summer, you can tell it was her greatest adventure.
Born with Spina Bifida and Hydrocephalus, Alejandra faced many surgeries. Her first operation took place the day after she was born to close the hole in her spine and the exposed nerves. The second one shortly after, drained fluid from her brain. And most recently, an operation this past August modified her bowels and bladder.
She is affected from the waist down and has some movement in her legs. However 90% of her time is spent in a wheelchair. In the past year she has been able to walk short distances with her walker. It was a great accomplishment.
Since the early days of Alejandra’s life, Grandview played a key role in her journey. Referred to Grandview at just under one year of age through SickKids, she worked with occupational therapists, physiotherapists and speech pathologists in 6-week blocks on fine motors skills, crawling and walking. When she received a stem cell treatment out of the country, her Grandview physiotherapist assessed her before and after. She was crawling within days.
She likes going to Grandview. For her, it’s fun and hard work combined. There is someone there teaching her how to do things independently. Things like buttoning her jacket or doing up her zipper. Aside from the therapeutic services, Grandview has provided support, information and guidance to funding resources. I knew that our needs were looked after.
She went to JK at Campbell Children’s School at Grandview in Oshawa. Having therapy there every day for two years, she learned how to use the walker independently. She also knows how to get around her house in her wheelchair thanks to the Wild Wheelers program. No longer confined to crawling, she can move freely and even reach the light switch to turn it off by herself. Her next goal is to climb up the stairs.
Now Alejandra is in grade one. Her favourite subject is gym. We are currently working on her stamina, endurance and upper body strength. In the big picture we are striving for Alejandra’s independence, for now in mainstream school and down the road so she can figure out challenges on her own and advocate for herself. If she needs help she can ask for it.
That’s a big one. I’m originally from Oshawa, lived in Alberta for 15 years but returned home to have Alejandra. Grandview and all the support systems for Alejandra have kept me here. Looking back to the early, uncertain days of Alejandra’s life, I would tell myself not to be so terrified. There are great support systems in place that will help.
Grandview gave me answers. When you’re a first time parent you worry about the future. It overloads your brain. When faced with a disability it’s even more so. You just go day by day. Everything will work itself out. Be strong and be brave — just like I tell her.