Each of the eight candles on Brett-Granderson Arnalugaq Ikinilik’s birthday cake in Baker Lake last month marked one year the boy was never supposed to see.
It’s been a tough road for the special-needs child and his mom, Arlene Ikinilik, but the two continue to defy the odds together as Brett enjoys life every day, despite the challenges he faces.
Brett was born with a defective heart and faced emergency heart surgery during his first month of life.
Arlene, 28, said it was an incredibly difficult time, as she tried to deal with doctors telling her not to get her hopes up because Brett wasn’t going to make it.
Brett’s heart wouldn’t pump correctly and his blood would often flow the wrong way,
“The way Brett’s heart was pumping made it very difficult for him to breathe,” said Arlene.
“They didn’t say exactly when he was going to die, but they told me before his surgery, and again after it, that Brett wasn’t going to make it but we just finished celebrating his eighth birthday.
“He’s been strong enough to fight for his life from the day he was born and I know he’ll keep fighting for his life for many years to come.”
Brett still doesn’t talk but he’s an active young boy who, like so many other young boys in the Kivalliq, loves the game of hockey and cheering for his favourite team, the Winnipeg Jets.
He also loves to watch the TV show Family Feud, because he likes the show’s host, Steve Harvey. He would also eat chicken noodle soup every day and never complain.
Arlene said Brett, now in Grade 3, does interact with other kids, despite not being able to talk.
Sometimes, however, he will hit people if he gets too excited or really nervous.
“He’s able to use sign language to communicate with others. There are a few kids in town who can sign with him but mostly it’s teachers and student support assistants at the school, as well as my five-year-old baby, Cathy.
“I worry about Brett constantly. I really need a break, but there’s really no-one around who can handle him like I can.
“I’m very happy that Brett is fairly well adjusted and gets everything he needs at school.
“They really do a lot to help my boy, especially Pia Qaqqaq, who is the mother of Nunavut’s new MP, Mumilaaq Qaqqaq.”
Brett still faces another surgery in two-to-four years to, hopefully, correct his enlarged blood vessels.
Arlene said the doctors are amazed he’s doing so well, especially his neurologist, who never thought Brett would ever be able to walk.
Brett also has to deal with a seizure disorder.
Yet, despite all the prophecies of doom, Arlene said Brett is a content, happy boy, who enjoys life.
“I think about his next surgery every day. I try to cope with it by praying and singing to Brett every day. He gets really happy when I sing This Little Light of Mine or You Are My Sunshine.”
As much as Arlene loves her son and would do anything in the world for him, the strain of being a single mom and shouldering the load by herself for the past eight years has taken its toll.
She chokes up, trying to fight back the tears, when she says Brett may be going to the Naja Isabelle Home in Chesterfield Inlet.
“I would be able to work and be a better provider for my family if I did that, but Brett doesn’t know anything about it. I’m not sure he’d understand or accept it because Brett and I can’t go a single day without each other,” she said.
“I’m a single mother and I’ve been doing this on my own since day one, eight years ago, and there’s times I feel like I just need a break.
“But, then, if Brett was in Chester, I’d worry about him every minute of every day because I love him so much.
“So, I still don’t know if that’s the answer or not.”