Julie Little is able to get through each day without too much struggle. Of course she misses Molly, who she and her husband, Peter, lost to Diffuse Intrinsic Pontine Glioma (DIPG) in 2015, but she has been able to get through the days.
It’s at night that she struggles.
“At night my body physically reacts to (the grief),” she said, “so it just won’t fall asleep. You have this fear, but you can’t connect it to a thing. I’m not scared. I’m not sitting there thinking, ‘oh I’m so scared to die or I’m scared of darkness.’ My body is just having this panic.”
Julie, Peter, big sister Sam, and little sister Clara have been without Molly for nearly two years. During that time, the military family (Peter is in the Air Force) has had to move from Tampa, Fla., the only home the girls have known, to Virginia.
“The move brought a lot of different emotions, as far as Molly goes,” said Julie. “The obvious one is just trying to carry her memory with us, but it’s in a completely different place — even though she’s really everywhere in our life.
“We have pictures all over and the girls talk about her all the time, but it was a very hard move for the girls because all they knew was in Tampa. That is normal for any child, but adding where Molly was and going to a place where she’s never been and people have never met her, was very hard on everybody.”
Conveying the Weight of A Loss
One of the most difficult things about moving for Julie was the struggle of telling Molly’s story to those who had never met the Little family.
That dreaded question of, “How many children do you have?” has created an enormous amount of pain and inner turmoil.
“Giving her justice in telling how brave and incredible she was — you just can’t,” said Julie. “It’s not possible. People who met Molly and were close to her, they understand it. People that saw how these DIPG kids really suffer. It’s just horrific, so you don’t want to terrify new people when you meet them.”
That inner battle of deciding what to say and what to share is exhausting to say the least.
“It would take weeks to sit down and talk about who Molly was, what she went through, what our family went through,” said Julie. “So, in the end, you just say something along the lines of, ‘We had another daughter. She died of a brain tumor.’
“Then you kind of move on because you can tell it makes people uncomfortable, for the most part.”
The Ache That Never Goes Away
Peter and Julie have coped with losing Molly in their own ways. For Julie, writing is her outlet. She shares her anger, grief, and frustration with life after Molly in her own blog, P.S. I love ….
“Grief is such an inconvenience,” she wrote in one blog post. “I wasn’t expecting to cry today. I wasn’t expecting to be brought back to the day they told me Molly was terminal. I didn’t want to re-walk those hallways, smell the antiseptic, feel the tightness in my throat as I held back bawling just so Molly could have a simple check up.
“But grief doesn’t care what I want today. It shows up uninvited. Sloppy, messy, rude, and intrusive. I plan on stepping out later and putting a smile on. Others will never know what’s going on inside, because honestly, it’s awkward.”
Julie has also been writing a book to share Molly’s journey with the world. She has always felt it’s a story that has to be told, though the process of re-living it all has been grueling.
“Honestly, I had to take a break,” she said, “partly because the deployment — it’s just been very busy — but I’m in this stage where it’s re-living her last days and I just mentally needed a break from it. It was too much to re-live.”
Putting on A Face for the World
Julie doesn’t hold back when she’s talking about having to put on a face for the public. She hates that she has to have one, especially because she feels there is an unspoken expectation that she get over her loss.
“Grief is just continual,” she said. “I feel so much pressure to be done — to be over it — and some days I feel like I’m just starting it. And that’s pressure, because you feel like — even though nobody has said anything you — like people are saying, ‘Well, you should be getting better by now.'”
Once that first year after losing a child has passed, that pressure mounts. Life goes on for those who don’t live day-to-day with the reality of a horrible loss and it can feel so lonely for the family.
“I think Americans hate emotions,” said Julie. “I think interactions through social media have changed the way we interact with human beings. People say things on social media that they would never say to someone’s face and it’s becoming more and more acceptable.
“I feel like interactions with people are so less humane and real and honest, and people think crying and grief equal ‘bad’ so they try to avoid it or they try to fix it and you can’t do either.”
Getting Good Out of the Bad
Despite her unending grief, Julie does see good that has come out of losing Molly. Just as the Carr family sees good that has come out of Chad’s battle with DIPG – awareness, research, and appreciation for life — Julie sees what has come after losing Molly.
“The biggest one is that I just see the world so differently,” she said, “and I’m thankful that I do. I see empathy and sadness and loneliness so much differently. If anything, that makes our family as a unit be able to notice it more, maybe help people a little bit more.
“Just because I’ve lost Molly doesn’t mean that I’ve never snapped at my kids or enjoy books that I read to them all the time. We’re human beings. But it does put a different perspective on things.”
Our Call to Action: Finding a Cure
The ChadTough Foundation is looking to be a part of the accelerated change happening within the DIPG research community by contributing money and awareness to the cause. The Inaugural ChadTough Champions for Change Gala will be a big part of that, taking place on Saturday, May 13.
You can make a difference by purchasing limited tickets now available to the public at chadtough.org/gala.