“We were going to have to go through the hardest experience of our lives, but we were okay because we were in a place that was going to guide us through it.”
Perinatal loss and support
‘Little, tiny baby with the cutest button nose’
Katherine Clubine and Michel Schafer started their journey with Roger Neilson Children’s Hospice when their newborn daughter Norah encountered major challenges. After spending the first few weeks in the neonatal unit at CHEO, the family turned to Roger Neilson Children’s Hospice.
Katherine, Norah’s mother, says, “Norah was born in July of 2021. She had the cutest button nose and my chin dimple. She was this little, tiny baby. I think it became clear pretty quickly that she had some challenges. Her life was going to look very different than what we had envisioned for her when we first learned we were pregnant. But you know, we loved her anyway, we said we love you to the moon and back. We’re going to help you live the best life that you can.”
Family-focused care through the most difficult days
Norah started declining at about seven weeks old and it started to become clear that the challenges were just too much for one baby to handle.
The palliative care team at Roger Neilson Children’s Hospice became involved in their lives, caring for Norah. “But they also took care of both Katherine and I; they treated us as a family unit,” says Michel.
Katherine added, “We were going to have to go through the hardest experience of our lives, but we were okay because we were in a place that was going to guide us through it.”
Norah Schafer passed away peacefully at Roger Neilson House on September 2, 2021, with her entire family in the room to say goodbye.
The Roger Neilson House hug
“We spent the whole afternoon together as a family, and it was the most beautiful afternoon. I just felt like this ball of fear that had been in my stomach for weeks had started to lessen. That was the first time that I felt that Roger Neilson House hug that I call it now,” said Katherine.
Roger Neilson House gave the family a set of heart-shaped necklaces, with Katherine and Michel’s missing a heart, which went to Norah. “We wrote Mommy and Daddy on each of our hearts, and we gave those to her to keep forever. All three of us have a part. It is one of the most precious things I own,” said Katherine.
“I think working with the team here, and the counselling, has allowed us to process those memories because they have helped get us through that grief and rebuild elements of our lives,” said Michel.
The connection continues
Even though Norah has passed on, Katherine and Michel are still a Roger Neilson House family. “I feel Norah’s spirit here in Roger Neilson House because she was here. So, whenever I come here for an event it makes me feel like I am spending time with my daughter,” said Katherine.
Both Katherine and Michel have courageously shared their story as part of the Senators Community Foundation’s Ignite Hope campaign, raising awareness and funds for Roger Neilson House.
Our Stories
Discover the touching stories and journeys of children, families and caregivers.
