Grief isn’t a simple process. It comes and goes in waves and can strike without warning.
Cecilio and Isabel Torres have been coping with sadness and grief for nearly two years after the loss of their youngest child, Gabriella, who was diagnosed with Diffuse Intrinsic Pontine Glioma (DIPG) on March 17, 2015.
Gabriella passed away just one week before her sixth birthday on November, 7, 2015, and, while the following year was incredibly difficult, in many ways the second year is revealing itself to be even harder.
“I think that the first year we had a lot of friends and family that just would not allow us to be alone, and so we were very distracted,” recalled Cecilio of the months of October, November, and the holiday season.
“This year it wasn’t like that. It was just our family — our immediate family — and we really felt it. We live and learn, obviously, so we plan to be very purposeful this year concerning the time that she passed away.”
The overwhelming feelings of sadness are almost involuntary and can trigger at any time. The Torres family has had those triggers out in public but, for the most part, has felt that incredible grief the most when they’re at home.
“You try to put on a happy face, obviously, and we’re not moping around when we’re at work,” said Cecilio. “But when we’re alone and we’re at home, there’s definitely a deep sense of loss.
“It’s a little greater around the time she passed away than other times. It’s just very overwhelming.”
Always Remembering Gabriella’s Smile
Though it’s been more than a year since Gabriella passed away, the Torres family keeps her alive through photos, their conversations, and nighttime rituals.
“I just finished reading the kids to bed a little while ago and part of the routine is still putting (Gabriella) to bed so to speak,” said Cecilio.
“We still do her lullaby and things like that. It’s just part of the routine. So she’s kept alive that way.”
Gabriella carried a small, polka dot blanket around with her that Cecilio and Isabel decided to keep with their family. Their other daughter, Amaris, sleeps with it.
“There was a person that gave us a doll when Gabriella was still alive, and it had Gabriella’s name on the little skirt of the doll,” said Cecilio. “And that’s essentially become Gabriella so to speak.
“When we take out of town trips as a family, we typically will carry the doll with us, and the blanket. As a form of saying Gabriella is with us.”
The Torres family holds onto the tangible items that remind them of Gabriella, but they also talk about her all the time.
“The one thing we always talk about is just how bossy she was,” said Isabel with a laugh. “I think yesterday or the day before, one of my Facebook memories was about me calling her ‘bossypants.’
“I think it was one of the first times I called her ’bossypants.’ She just nonchalantly answered, ‘Yes, because I like to tell people what to do.’”
Gabriella, the Boss
Cecilio and Isabel honored their daughter’s love of being in charge through the foundation they established, Gabriella’s Smile.
“To some degree now with the foundation she is the boss,” said Cecilio. “Isabel and I, when we launched the foundation, we kind of determined we’re the founders — Isabel and I were the founders of the foundation — but over the period of the year that we’ve been with the foundation, we’ve kind of backtracked a little bit.
“The truth is she is the founder. So when we finally establish our foundation on our own and launch out from CharitySmith, the goal or the plan is that she’s going to be the founder and Isabel and I will be the co-founders.
“She’s living her dream now. She would be the boss. She’s the bossypants of our foundation.”
The mission of Gabriella’s Smile Foundation is to provide direct financial assistance to families of children diagnosed with DIPG, create DIPG awareness, fund research through foundations dedicated to DIPG research, and also provide support to pediatric brain cancer patients in San Antonio, Texas.
“In the midst of all the pain and the sorrow that we were going through, the one light in all of this was the incredible support from our DIPG community, the foundations that just helped us tremendously financially when we needed it the most,” said Isabel.
“So that’s what we have focused the foundation on. Right now, we are awarding $500 grants to these families and our goal is to one day double it to where we can give them $1000.”
The siblings of a child who has passed away often take on a protective role over their parents and Jadon and Amaris are no different.
“Jadon’s the one that gets a little more vocal about his feelings,” said Isabel. “He’ll come up to us and say ‘oh, I miss Gabriella,’ or, ‘I wish she was here,’ or things like that. He’s the one that gets sad. He lets us know he’s sad and misses his sister.
“Amaris, she kind of has that attitude where she doesn’t want to be sad. She wants to always smile and remember Gabriella in a positive way. She just tries to block it out when she sees Mommy (being sad).”
One way Jadon and Amaris have been able to honor their sister is through the children’s book the family recently published. Written by Cecilio and Isabel, Jadon and Amaris illustrated the book alongside artwork from Gabriella.
The family is now doing book signings in their local area to raise awareness around DIPG and tell the incredible story of their precious daughter.
“It’s hard to move forward,” said Cecilio. “We don’t want to stay in 2015. A part of us does, a part of us knows that we can’t. We have to move on, we have to live life not only for ourselves, but for our children.
“So it’s a little easier balancing that now, but we do find many times wanting to go back and wanting to remember that period of time and just grieving … grieving the loss of our child.
The conflict of wanting to stay in the past but move on with the present is one that so families grieving the loss of a child struggle with.
“We do have moments where the days are a little longer because of sadness,” said Cecilio. “It’s just the uncontrollable sadness. It just kind of comes on you and, when it does, you just kind of have to let it be, and then it goes away.”
What You Can Do
When it comes to DIPG, there are so many things you can do to make a difference. Remember, every cure started somewhere!
- Vote for Coach Beilein in the Infiniti Coaches Charity Challenge to win $100,000 for DIPG research. All winnings are going directly to Michigan Medicine’s accelerated pediatric brain tumor initiative.
- Share this and other stories about DIPG to raise awareness around the need for research and funding. Dollars flow toward the loudest voices.
- Donate to The ChadTough Foundation, which is focused 100-percent toward DIPG and pediatric brain tumor research.
- Become a ChadTough Champion or a volunteer!
As always, thank you for being ChadTough!