Canuck Place mom, Michaela Evanow shared her emotional Canuck Place journey with over 500 guests at the 12th annual Gift of Time Gala on October 15th.
“Our daughter Florence Marigold, was four months old when she received a deadly diagnosis for Spinal Muscular Atrophy type 1,” Michaela explained to the crowd. “Babies with SMA type I face many physical challenges, including muscle weakness, trouble breathing, coughing, and swallowing.”
Michaela was quick to point out that while children like Florence need extensive medical assistance, the disease does not affect their mental development.
“These children are bright and possess a strength and wisdom that is evident in their eyes,” she said. “They speak volumes even when they say nothing at all… I wish my little girl didn’t die, but I also feel overwhelmed by her legacy and the bright flame of love that she left us. My life has been changed by her, in the best possible way.”
“I never imagined my firstborn, my daughter, would die before me. But she did. And she passed away in the most beautiful, loving environment. We will never see her grow up, but we were able to plan how we wanted to release her.”
Canuck Place helped Michaela and her husband come to terms with their daughter’s diagnosis, and let them be the best parents they could be for her.
“We could never have done it on our own, because no parent can be caregiver and be present when the time of death draws near. The whole experience was intense and agonizing, but we were never alone. We were always cared for.”
In May 2015, Florence’s condition worsened. Rather than put her through another grueling hospital stay, the family opted to spend her final hours at Canuck Place.
“We gave Florence dignity, love, and a king-sized bed for mama and daddy to cuddle her. The sheets were a soft sage green. They weren’t starchy white. She had a handmade patchwork blanket resting on her hips. There were play mats on the floor for our son Teddy, and toys and marigolds filled the room. The windows were open, and we could hear the birds and the gentle hum of the neighbour’s lawnmower.
“We played music all day long and eventually turned off all the monitors and machines. For once in our journey with our daughter, we did not worry.”
“In her last moments, we were able to be fully present. We were mama and daddy. We were a piece of her, moving as one, as she left this earth.”
Once Florence passed, the family was invited to spend a final night at Canuck Place.
“I tried to muffle the sounds of my crying, but I am sure the staff heard me,” Michaela remembered. “It didn’t bother me, because Canuck Place is not surprised by death or grief. I never felt safe to be emotional in open rooms of the PICU, but finally, after all the years of worry and tension, I felt I had permission to release the torrent of sorrow that had been building up within me.”
“I woke the next morning, on Mother’s Day, knowing my little girl was downstairs, waiting for us to bid her farewell. My heart fluttered with anticipation. I could see her one more time. This is possibly the sweetest gift Canuck Place gave us: one more moment with her. There was no rush, only deep respect for our wishes and for Florence.”
Canuck Place has continued to support the Evanow family in the year and a half since Florence’s death, through bereavement counselling, and regular visits to the house.
“We can introduce our two-year-old son to the magical world of Canuck Place and teach him about the sister he once kissed and touched and giggled with. When we visit, we feel at peace, knowing Florence had the finest care. Standing in the place where our daughter found rest and finally received a heavenly strength brings tremendous healing to us.”
“We remember her at the festivals and ceremonies, and we teach our son to remember her, too. But, I also remember this place held my wails and my sorrow and held us in at the most devastating and vulnerable time in our lives. When we left, the day after she passed, we were given a box of food and were reminded that they would see us soon.
“Our journey with our living, breathing Florence is over, but our grief journey is just beginning, and Canuck Place isn’t letting us go.”
The 2016 Gift of Time Gala raised funds for Canuck Place children and families. You can still support the Gift of Time Gala and families like the Evanows through the Friends of Gift of Time fund.