When you’re a parent there’s a million little milestones to celebrate with your child. When you’re a Canuck Place parent, those precious milestones are often a little different.
Akiho Matsunaga knows this very well. Her son, Soskay was born in 2010 with a heart defect, liver complications, and Down Syndrome. His first few months were touch and go, a blur of surgeries and medical devices. It seemed doubtful that he would be able to leave the NICU. Countless childhood milestones seemed out of reach.
The Matsunaga family was soon introduced to Canuck Place Children’s Hospice. They were nervous at first, not knowing exactly what the referral meant for their son.
But once they arrived, their whole perspective shifted. Since Soskay was born, caring for him had taken up their whole lives, but now, for the first time, they could finally relax.
“We were taken care of fully by doctors, nurses, all the stuff here,” says Akiho. “We don’t need to worry about his medical needs. We could just spend time with him as a family.”
For Akiho, not having Canuck Place in their lives is simply incomprehensible.
“We don’t have family members here,” she says. “This is our family.”
“When we come here everybody is welcoming, Soskay is happier and it feels like it’s okay have him in this world. We have a space, we have a place to have him. He can live in this world.”
Since coming to Canuck Place, Soskay grew stronger. He slowly began to hit milestones that had at one point seemed out of reach.
He learned to scoot on a mini-bike, rolling down the halls and into the garden of Canuck Place, his infectious smile spreading to nurses and visitors he passed by, but he still couldn’t walk and needed to be carried wherever his scooter couldn’t go.
Until he was 5 years and 3 months old. He finally learned to walk.
“It changed our whole life,” says Akiho. “I don’t need to carry him anymore. I still love to carry him, but that changed our family’s life. Now he’s often running. I can’t catch up with him anymore!”
Seeing Soskay walk was a Best Day Ever for Akiho. But another day quickly came to mind as well, a milestone signified by silence.
Soskay needed a feeding tube for years. Dealing with the upkeep and regular beeping of the tube controlled their family. When that beeping started they needed to drop whatever they were doing to address it, at any hour of the day.
Eventually, it was decided Soskay no longer needed the tube. They had it removed. She remembers a time shortly afterwards, when they realized they no longer heard the persistent beeping.
“We just kind of stopped, and said ‘it’s quiet, what’s going on?’ We can go out more now, not worrying about that beeping sound.”
Spending time enjoying the little milestones as a family. That’s a Best Day Ever.
What kind of milestones have been extra special to your family?
You can help Canuck Place families like Akiho’s. Donate today.