Like any first-time parents, Chelsea and Dallas Schmeizel kept a close eye on their baby boy Kale, looking eagerly for any and every sign of development.
Unlike most parents, they didn't know what they were looking for.
Kale was born premature and underweight in June 2009. Shortly after birth, he suffered from bleeding in his brain, which eventually led to a diagnosis of cerebral palsy. But in the early days of his life, Kale's parents weren't sure how severe the damage from the bleeding was and what the final outcome would be.
After spending the first three months of his life in the hospital, first in a neonatal intensive care unit in New Westminster and then in Prince George, Kale was released and his parents were tasked with keeping a close eye to see how he was progressing.
"I already knew I was watching for something, I just didn't know what I was watching for," Chelsea said.
The first clue came a few months later when Kale started making strange, rhythmic movements with his neck. It turned out to be infant seizures. Months of specialized medication followed to correct the seizures, but the impact of the brain damage from the initial bleeding has turned out to be severe.
At four years old, Kale is unable to sit independently, walk or eat solid foods.
"Everything that they said was going to happen to him has happened," Chelsea said. "But he's happy, he doesn't know any different."
The Schmeizels are grateful to all the help they've received in raising Kale so far, including from Variety The Children's Charity. The charitable group started helping the family as soon as Kale was born by assisting in covering the cost of Chelsea's accommodation for the 11 days Kale was a patient at the Royal Columbian hospital in New Westminster and have helped with travel costs for medical appointments in the Lower Mainland since. It also helped fund the special drugs needed to deal with Kale's seizure disorder, which cost $70 every second day.
"They've really helped provide relief so I can focus on Kale," Chelsea said.
Variety will be holding its annual B.C. telethon this weekend on Global television to raise money so it can help children like Kale and their families as they deal with the challenges the surround raising a special needs child. The broadcast, which lasts more than 22 hours, will features acts ranging from Cirque du Soleil to Elton John to Adele.
Chelsea said before Kale came into their lives the family didn't know much about Variety, but quickly realized how important a role the charity would play in their lives when they set her up in a bed and breakfast soon after Kale was born.
"It was extremely helpful because I could just focus on Kale," she said. "I didn't have to worry about where the money is going to come from, how am I going to come up with $2,000."
In addition to Variety, Chelsea said the Child Development Centre in Prince George has been an excellent source of support. They're able to accommodate Kale's disability and have the expertise on site to ensure he's getting excellent care.
"I don't think he'd be where he is without them," she said. "They just know how to work with him."
As Kale continues to grow, Chelsea and her husband are still watching for any developments to indicate what he will or won't be able to do. He's now able to say hi and nod and his parents hope he'll eventually be able to use an electronic aid to communicate even more. One day he may be able to use an electric wheelchair.
Raising a special needs child is a unique experience and Chelsea said no two children are alike, which makes it more difficult to figure out what technology and equipment will work for her son.
As a family she said it also took time for them to come to grips with who Kale is and what his limitations will be.
When parents are expecting a child, Chelsea said they often subconsciously plan out their lives.
"They have a certain expectation, they're going to crawl, they're going to walk, they're going to ride a bike, they're going to draw you a picture, they're going to be able to say mom, they're going to go to school, they're eventually going to graduate, they're probably going to get married and you're probably going to have grandchildren," she said. "Without thinking about it you probably have their entire life planned."
For she and her husband, that won't be the reality they experience.
"It's a constant grieving process because that will never be Kale's life," she said. "But he just has another path and now it's about getting to know what that path is."
While Kale's cerebral palsy means he won't reach all of those life milestones, Chelsea is comforted by the fact their son is happy and content.
"He's doing really well on his own path," she said.
