The year Tasha Ives celebrated Christmas in October was the toughest she ever faced.
It was her 11-year-old daughter Sydney’s last. She was dying of a brain tumor, and she knew it.
“I remember she looked at me and said, ‘Mom, I’m ready to go when God wants me.’ She was unafraid,” she said. “Our hope became more about quality of life. Days. Moments in time with our daughter.”
That year, her daughter painted each family member a piece of artwork, saying how much she loved them.
“Seeing my daughter have such (resolve) made me want to keep the traditions going,” Ives, 47, told USA TODAY. “Christmas is my favorite time of year and I didn’t want to let the loss rob me of that.”
Since Sydney has passed, Ives has continued to celebrate Christmas early. She puts up her tree on Nov. 7, the anniversary of Sydney’s death.
“During the holidays, grief and loss are going on in all forms, whether it be loss of a way of life, not seeing people you love, losing jobs or losing loved ones. I think the key is finding a source of hope to cope.”
In the years after they lost their daughter, Ives and her husband Dean have counseled other bereaved parents at St. Jude Children’s Research Hospital, where Sydney received treatment.
“We all grieve in different ways as parents and moms and dads,” Dean Ives said. “I’ve learned it can be so healing to ask someone about their child they’ve lost, to mention their name. It’s one of the very best ways to honor someone to someone who is grieving. I’ll say, ‘tell me about them. What did they like about Christmas?'”
Tasha has written about parents’ grieving and loss for the medical journal, Pediatric Blood & Cancer, and the Ives have used their empathy for other grieving families as a healing measure for themselves.
“When the pain in your heart starts to break for others, then your heart starts to heal at the same time,” Tasha Ives said. “We don’t pretend our pain isn’t there. We just compassionately feel for others.”
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Navigating the ‘fog’ of heartbreak
Katie Witsoe said she was in a “fog” of heartbreak after losing her son, Sean, at age 5 following an 18-month battle treating medulloblastoma.
The exuberance everyone else was feeling during the holidays was off-putting for Witsoe and her husband Craig, as they tried to navigate a happy experience for their other four children at the time, including Sean’s twin brother, Matthew.
“In those early years, the grief is so strong and we were just trying to get by,” Witsoe said. “After you lose a child, nothing seems normal at all.”
Perhaps the most challenging part of the Witsoes’ grieving process, in the aftermath of the loss, was sensing people who didn’t know what to say to them in public settings during the holidays.
“It’s hard to watch somebody grieve,” Witsoe said. “People want to make you feel better. And nothing they do will make you feel that much better. Because all you really want is your child back – desperately.”
What’s most helpful, Witsoe said, is when people actually mention Sean. “When someone just recognizes his name and says ‘tell me about him,’ that actually gives me a lot of hope. Because then he’s not forgotten or not talked about to make other people feel comfortable. He’s still with us.”
Eventually, the fog of sadness began to lift.
“Now I experience a different type of joy when I think of Sean,” she said. “I don’t think about when he was sick and dying. I remember happy times. I can watch videos and I don’t just sit and cry. I can look at them, laugh and smile at the joy he experienced when he was with us.
“As long as we remember him, who he was and what he was about, what he meant to us, then he’s very present in our lives.”
About a decade removed from losing Sean, Witsoe said her evolved hope derives from her son’s everlasting impact on her heart.
“When Sean died, the hope for his recovery was obviously gone, but our hope changed for our family to survive the loss of our beautiful son and brother and to become a source of compassion and hope for others like us who are suffering.”
Jesenia Perez was pregnant at the time when she lost her infant son, Sebastian, at 10 months old of acute lymphoblastic leukemia. After an emotionally grueling fight at St. Jude, which included chemotherapy treatment on Sebastian’s small body, Jesenia just needed to be home in Santa Clarita, Calif. Her husband, Hector, used the holiday season to propel his family forward after the devastating summer loss of their son.
“I had double the emotions grieving and being pregnant. It was so tough leaving the hospital without my baby, going home empty handed,” Jesenia Perez, 36, said. “We lost him right before the holiday season and didn’t have the energy to do anything, I wasn’t in the spirit. But my husband was always getting me out of bed … you need to have that person who can help you to not get lost in those deeper, painful thoughts.”
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Nowadays, a memorial of Sebastian is displayed in their home and Jesenia takes pride every December in decorating his marker at the cemetery with a Christmas tree. Sebastian will have a stocking along with his other siblings, and an image of Sebastian is even held up in family portraits.
“He’s still with us, watching over us and smiling down,” Perez said. “I’ve learned how much I love to decorate because it’s one of those things I can do for my son, giving him a beautiful Christmas set-up. That to me makes me happy, it helps me with my grieving. For my other kids, I want them to see that it’s something happy about their brother.”
Justin Baker, a palliative care doctor and chief for the division of quality of life at St. Jude, said the marriage between grief and hope is essential for families, and that unifying families of similar losses can be cathartic.
“Hope is one of the most important things we have in life,” Baker said. “We encourage (families) to continue in and with a relationship with their deceased child – hope through the continuing bond of the ongoing relationship.”
Jesenia said she’s learned that her emotions come in “waves” through the grieving process – at one moment being perfectly fine and then the next, completely breaking down.
“Anything can trigger it sometimes,” she said. “But it helps to talk about my son, to know he’s OK and at peace. He’s no longer suffering. Sometimes people don’t know what to say. But I try to explain that tears rolling down my eyes is a good thing. It means Sebastian’s still with us, he’s still here in my heart.”