My daughter's cancer is a tragedy. But her bond with her adopted nana is healing my heart

This First Person column is the experience of Julie Jewett, who lives in Nepean, Ont. For more information about CBC's First Person stories, please see the FAQ.

We were socializing in our church lobby on a Sunday after service when one of the parishioners — a kind lady with a sweet disposition — said, "Lily looks so much like her grandmother Debbie." 

It wasn't the first time someone had said that. They both have light wavy hair and huge smiles that can light up a room. When you see Lily with her nana, there is a distinct bond between them. It's not uncommon for grandparents to understand children in ways that even parents are not privy to, and nana Debbie is Lily's person. They even look alike, but they are not related.

Over the years, when introducing nana and Lily, many people have commented on their similar appearances. I smile in agreement and sometimes add that there is no biological connection. We get puzzled looks, but the simplest explanation is that Debbie is like an adopted grandparent. Adoption is an accepted part of parenthood, so why can't it be the same for grandparents? 

Nana Debbie came into our lives a few years after my husband and I had moved to Ottawa for my new job in the federal public service. Our daughter Lily was born in June 2017. We had waited five long years to become parents after a series of miscarriages so it felt like a fairytale. Our little beautiful baby was happy and clever, and other than some severe nausea, she was developing remarkably. But our fairytale quickly turned into a nightmare when Lily was diagnosed with a brain tumour four months later. I remember the chief neurosurgeon cautioning me that I might not want to see her MRI images because they were shocking even to him: a large tumour in the centre of a small baby's brain.

I fluctuated between abject terror, numbness and blind hope. Lily and I moved into the oncology unit at our local hospital and we spent nearly six months battling this beast. One of our neighbours, Debbie, visited us in the hospital. Debbie told me she clearly remembers looking at Lily through the bars of her steel crib and thinking to herself, "How can I help?" Nobody could have predicted that Debbie would end up becoming Lily's favourite person in the entire world. 

Debbie was approaching retirement and didn't have any grandchildren yet. At the time, my husband's parents wanted to help but they had their health concerns and both of my parents were living in long-term care in Calgary. I was naive about it then, and I thought I could take care of everything myself. But I needed help, and that help came to me organically as our relationship with Debbie developed from neighbour to nana. 

Nana Debbie has been by Lily's side at children's hospitals in Toronto, Ottawa and Montreal as we search for an effective treatment for her relentless disease. It's been traumatizing when I've had to hold down my screaming child countless times for blood work. Part of me wishes to be Lily's sanctuary, but I'm often not, and that's OK because she found it in somebody else. Nana is Lily's safe place and we have chosen for Debbie to have minimal involvement in Lily's hands-on medical procedures to maintain this trust. When Lily is feeling unwell and we don't know what to do, we call nana. Debbie lives across the street and often will show up in five minutes, which immediately perks Lily up. It is pure nana magic. 

Lily is now six years old, and she has had a stroke, significant vision loss, constant vomiting as well as intractable seizures. Eventually, she had a miraculous surgery called a hemispherectomy which stopped the seizures. She has one functioning brain hemisphere but that hasn't stopped her from learning the alphabet and she is thriving in Grade 1 at school. 

She is full of joy and loves to be silly. She and nana spend a lot of time together reading funny books, singing songs and taking walks. We're mindful that Debbie has her own family and responsibilities and we want to be respectful of her time and generosity, so we pay her as a personal support worker with some government respite and family support funding that allows my husband and I to take a break from caregiving with Lily's disability. It doesn't cover all that Debbie does for us and her dedication to Lily is priceless.

The immense responsibility of 24/7 caregiving nearly suffocated me on a few occasions. I have needed a lot of professional and peer support for my mental health but the main reason I am standing tall today is that I no longer feel alone. Nana Debbie has been in the trenches with us from the beginning. My husband and I even felt brave enough to attempt for a second child. Grace was born in 2022 and she brings immense joy and normalcy into our life. 

Lily has become a sweet big sister who is successfully learning to share her toys and her adopted nana who now loves both our girls like her own. Witnessing the fierce love shared between them has helped to heal my heartbreak over her illness. Amid the greatest possible tragedy, we found something indescribably beautiful. It is never lost on me that Debbie entered our world by choice. 

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