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Hamilton Health Sciences Home
woman holding open a book with a large picture
January 3, 2020

Parents pen book to help children facing death

Saying goodbye to a dying child may be the hardest thing in the world. It’s even harder when you can’t find the words to express how much you love them in those final moments. When Carla Garrett’s son Xavier was dying, she couldn’t find the right words to say to him. So, she set out on a mission to write a story to help other parents comfort their child during a helpless time.

My love will follow you there

Carla and her husband Mark wrote and illustrated the book, My Love Will Follow You There. The short, heartfelt story is meant to be read to children as they transition from life to death. The book uses poetic language and calming imagery as a way for parents to express their feelings during their last hours together.

“Families often feel at a loss for what to say to bring comfort to their dying child. This is a book that a parent could read to their child at end of life. It offers the opportunity for the child and family to share a mutual understanding of their love” says Cindy van Halderen, who was the family’s social worker in the cancer program and now specializes in pediatric palliative care. “It’s about a shared commitment to stay together, despite the physical separation. It’s beautiful.”

In this light
there’s more joy and more love than
anyone could ever imagine. And
my love will follow
you there.
At a loss for words

Xavier was diagnosed with a brain tumour at McMaster Children’s Hospital (MCH) when he was nine months old. In 2017, when Xavier was eight, he passed away at home with the support of the palliative care team at MCH.

“As much as the palliative care team assured us Xavier wasn’t in any pain, I couldn’t stop this fear of him being in this darkness and the mental frustration of being between here and the place we go next. He wasn’t able to communicate. I felt really helpless,” says Carla. “Aside from telling him how much I loved him, I really struggled to find the right words to bring him peace.”

Six months after Xavier died, Carla started writing. Once they got the words down, she and her husband brainstormed the imagery. Their daughter, and Xavier’s twin sister Mackenzie, was the model in the photos. “It was a family project and helped us all through the grieving.”

Carla and her husband hold up a copy of the book

For Carla, the book opens the dialogue between the parent and the child. “It allows the parent to find their voice and gives their child permission to die, which is a really difficult thing to come to as a parent.”

An item on the comfort cart

The book will be available to families through the Comfort Cart project at MCH, launching early 2020. The portable cart will provide a variety of comfort items for families who need them, like soft tissues, music, books about coping with loss and grief, hand outs with information about practical matters, and items for legacy creation such as a digital stethoscope to record a child’s heartbeat.

“We recognize that every situation is unique and every family is different, but the book is just one resource available to families who would like it,” says Carla. “Not only does it bring comfort and guidance to the child who is going through the dying process, but it can also bring peace to parents who have to carry their child to the next life.”

The book was released digitally on May 13, 2019 on the second anniversary of Xavier’s death and is available at MCH to families caring for a dying child.