How to Care for Your Terminally Ill Child

Over many years, we’ve found that people who have used CaringBridge are often willing to share their experiences with the hope of helping others. And while the very thought of losing a child makes the mind shut down and the soul weep, some parents who have been through the worst thing that can ever happen have nonetheless opened their hearts to reflect on the honor, agony and also the joys of caring for a child living with terminal illness. Here are some things parents had to say, with a heartfelt wish that you may never walk this path:

Cherish Every Moment

“Enjoy each day with your child. Little things matter. Have fun and make memories. Take time to do things that they enjoy. My son liked collecting Beanie Babies and action figures, watching movies, comedy, country and rock music, video games and being on the computer. After he passed, we donated most of his collections to help others. It helped me with the grieving process. I get out some of the things that I kept from time to time and it’s like having a piece of him still with me. Sometimes I cry, but a lot of the time the memories bring on a smile and even some laughter. Life is short; enjoy.”

—Linda R

Keep it Colorful

“My son was born in Tennessee, so he liked to have a lot of orange around … it is the color for the University of Tennessee. We had orange tea kettles, planters and flowerpots. All my garden still has orange and white flowers in it. It’s a nice, bright color, and Zachary just loved seeing it. It made him so happy. He was 16 when he died of cancer in 2012, but whenever I see the color orange it still reminds me of him. It lets me know that he’s here in spirit, even if I can’t touch him.”

Kat S

Look for Light in Darkness

“We always tried to examine the joyful moments of life against the backdrop of darkness. Doing this let us see our lives—and our son’s life—in a new light. As we took care of him, we did everything we could to just let him be a teenager. During this time, I used writing as an outlet; it became a way of reining in the wildness of the landscape of the cancer life, where monsters lurked around corners waiting to throw our lives into another tailspin, and somehow tame it and make it a little less scary.”

Laura S

Don’t Worry About Tomorrow

“On the Sunday following our daughter’s cancer diagnosis, we sat together in our church, holding hands as a family and listened to a sermon entitled, ‘No Worries!’ On that morning, we were reminded not to worry about tomorrow, as tomorrow will worry about itself. Worrying does not add a single hour to your life (Matthew 6: 25-34). Our daughter lived her life on the front row throughout her initial diagnosis and treatment, and each subsequent relapse. She was 14 years old when she took her last breath on this earth. She is greatly missed, but rather than leaving a huge hole in our lives, she left us with so many meaningful and funny and inspirational memories and experiences that our lives overflow with joy and love and peace and hope. Even in her absence, we feel her presence.”

Vicki B

Love, Love, Love

Mary Farr, a now-retired pediatric hospital chaplain in Minnesota, and author of the book, “If I Could Mend Your Heart,” has deep experience in caring for children for whom cure is not a possibility, and also for their parents. She said she has always kept in mind something said to her by a supervisor when she was training to become a hospital chaplain: “Caring for another during times of grief is all about the ‘interruptions,'” she said.

These “interruptions” can take many forms, from small moments of quiet and loving kindness to larger losses, endings and upheavals.

When Mary was a chaplain at Children’s Hospital in St. Paul, MN (now called Children’s Minnesota), she provided emotional support in 1997 to JoAnn Hardegger and Darrin Swanson, a young couple from Wisconsin, as they awaited the birth of their first child. Baby Brighid was born prematurely, at 26 weeks, weighing just 1 pound. Her health was so fragile, she lived just 9 days.

Looking back on the time she spent with JoAnn and Darrin, and their precious daughter, who never left the hospital, Mary said she was again reminded that the way you care for a child who will not survive is exactly the same way you care for any child—with an abundance of love.

Legacy of Baby Brighid

The CaringBridge team with founder Sona Mehring, right, and JoAnn Hardegger and Darrin Swanson, parents of Baby Brighid, for whom CaringBridge is named.

The launch of CaringBridge in 1997 is a direct result of the abundance of love channeled to Baby Brighid during her brief life. Our founder, Sona Mehring, is a dear friend of Brighid’s parents, and when they asked Sona to let everyone know how the baby was doing, she created a website called “Caring for Brighid.” That single website has since evolved into CaringBridge.

“You don’t ever fully heal from the loss of a child,” said Brighid’s mom, JoAnn. “But our daughter has a legacy. And may the love that came to us through CaringBridge be felt by everyone who needs it.”

External Resources

In addition to finding comfort in the words of CaringBridge users like you, you might also find such resources as the National Hospice and Palliative Care Organization and the American Cancer Society to be helpful.

Your Wisdom is Welcome

If you’d like to share a story or describe something that helped you care for a child with a terminal illness or injury, leaving a comment below may help other families feel that they are not alone.

If you are a parent or caregiver to a child with cancer, CaringBridge invites you to join our public community on The Mighty to find support, connection and resources from those on a similar family cancer journey.

Start a CaringBridge Site

When you’re going through a health journey, CaringBridge replaces the time-consuming task of sharing your health news over and over. It’s a free, easy to use online journal for sharing health information with your family and friends.