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Important life lessons from the death of a child

Dr. Janis Gonzales shares a joyful moment with daughter Cariana, who died in 2004 of leukemia at age 2. Gonzales shares her journey through grief and healing in her book, “Lessons from a Gentle Life.” (Courtesy of Dr. Janis Gonzales)

Always the butterflies.

In those aching days and weeks and months after the death of her 2-year-old daughter, Dr. Janis Gonzales started noticing them, fluttering yellow sprites around the cemetery in Santa Fe where her little girl was buried.

She accepted them as a sign, as a gift from Cariana, her beautiful little girl with the twinkling brown eyes who was diagnosed with acute myelogenous leukemia in her first year and who died in her second.

She has a tattoo now of a butterfly on her shoulder. It is another way to carry Cariana with her besides in her heart, her mind, her soul.

I tell her that many of the parents I have written about who have lost a child also speak of butterflies as messengers. The big swallowtail that landed on a couple’s porch they took as a sign that their recently deceased son had earned his wings. The mother at a gathering for parents who have lost a child to opioids who painted a butterfly on a memorial stone because they appear to her in her darkest moments of grief.

The University of New Mexico Hospital’s pediatric hospice program is called Mariposa, the Spanish word for butterfly.

Gonzales, a pediatrician and now the director of maternal child health at the state Health Department, was among those who helped create that program.

A hospice that specializes in the care of a dying child was one of the many things Gonzales said she wishes had been available when Cariana died in 2004.

One of the other things she wishes she had then was a guide book to help her navigate through her grief.

So she wrote one.

Gonzales’ book, “Lessons from a Gentle Life – Reflections on Love, Loss and Healing,” was recently published, but it has been years in the making.

“I wrote a lot of it in the six months after Cariana died,” she said on a chilly morning in Santa Fe. “Writing is a helpful way for me to cope. But then I put the writing away for a long time, and I realized later that if I made my writing more about the journey and the universal experience of grief and coping then maybe it would be helpful to other people.”

While part of the book remains a memoir, it is also that guide book, filled with research and the wisdom of the sages.

It is both easy and hard to read. It’s short enough to finish in a weekend, is well written (Gonzales majored in English and is a voracious reader) and is so full of wise thoughts that it’s hard to choose which quotes to include here. My copy is already dog-eared and highlighted like a textbook.

But it’s also painfully honest, and those who are dealing with the death of a child will see themselves on nearly every page.

“Everyone’s story of loss is unique, but I think the book will help people realize that they are not alone,” she said.

Too, she said, those dealing with a child’s death need never feel they must justify how or how long they grieve.

“It’s not like you go through grief and then it ends and you are happy again. It’s not linear like that,” she said. “But grief and joy can coexist.”

As Gonzales writes in her book: “Maybe that is the real purpose of grief, to break us down and make room for those other things we need in our lives. By having a capacity for so much grief, somehow it enlarges your capacity for joy at the same time, so that eventually they can exist side by side. The grief never leaves, but somehow it also makes room for joy.”

There are other lessons in her book – the gift of a special needs child (Cariana had Down syndrome), the science of prayer, the shortcomings of the medical world, the awkwardness of others who don’t know how to approach our grief, the search for meaning in death, the signs our children give us to comfort us.

“It’s very interesting as I talk with people and do interviews to see what part of the book different interviewers ask about,” she said. “There are so many things there and I think that’s good because it means there is probably at least one lesson that any reader can relate to. For me, one of the biggest ones was giving up the idea that I had any control. I had to accept my own powerlessness and just sit with that, which was really the start of my spiritual journey.”

And then the butterflies. Gonzales said she has received other gifts from Cariana, too, like suddenly finding heart-shaped rocks everywhere and waking up with the feeling that she was holding something warm and heavy and very familiar in her arms.

It was, she thinks, Cariana reaching out with love to comfort her and soften her pain with one last hug.

“I do think signs occur – to comfort us or reassure us or help us know we are on the right path,” she writes in her book. “And I still feel blessed when I receive those gifts of signs or a little help with discernment. I keep an eye out for heart-shaped rocks and clouds shaped like angels and the little yellow butterflies that will always be, to me, a sign of Cariana’s presence.”

Look up. They are there. Always.

UpFront is a front-page news and opinion column. Comment directly to Joline at 823-3603, jkrueger@abqjournal.com or follow her on Twitter @jolinegkg. Go to www.abqjournal.com/letters/new to submit a letter to the editor.

 

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