mother's day dipg

There Will Be A Heartbreaking Side of Mother’s Day for These 3 DIPG Moms

mother's day dipg

Tammi and Chad. Photo: The ChadTough Foundation

Mother’s Day is this Sunday. In light of that event, Angelique Chengelis wrote this beautiful piece to spotlight Chad Carr‘s mommy, Tammi. The story digs into what other mothers fear the most.

They were sitting together for a while when Chad told his mother he was tired.

And he pointed up,” Tammi said. “I said, ‘Do you want to go upstairs?’ And he shook his head no. And then he put out his arms for me to pick him up and I just held him. And he fell asleep and he didn’t wake up.

I don’t know if he saw angels, but it was a peaceful look on his face.”

The strength it takes to share something like that is insurmountable. For those who haven’t lost a child, reading it can be uncomfortable. We all want to remain in our bubble that doesn’t include loss – one that remains on the surface and doesn’t familiarize us with the sorrow of grief.

But it is that kind of sharing that brings about change. When those who have walked through such pain invite us into their journeys, they are giving us permission to approach. They are absolving that survivor’s guilt we let stand in the way of offering support.

In a way, they are taking us by the hand and reassuring us that it’s okay to be uncomfortable, okay to stumble over words. It’s extra effort they shouldn’t have to expend, but they do it for their children and they do it for the cause.

Making it Personal

mother's day dipg

Janet and Jack. Photo: Jack’s Angel’s Foundation

I met Janet Demeter through my work with The ChadTough Foundation. I cried as she recounted the moment her son, Jack, couldn’t play on the playground with the other kids because of Diffuse Intrinsic Pontine Glioma, or DIPG.

“Throughout all of it, the most important thing is just that he was here and he was an amazing little boy,” she said.

Even though Jack’s Angels Foundation – by Janet’s own account – isn’t a money-generating powerhouse like some of the other DIPG nonprofits, she does whatever she can to move the needle. I am in constant awe of her drive and determination to make a difference using what resources she does have at her disposal, most notably her time.

I followed her Facebook feed as she trekked 200 miles to raise awareness for HRes586 – Chad and Jack’s DIPG Resolution – which she has fought hard to pass. Then she marched up to the Hill to talk to politicians about funding DIPG research.

Her strength amazes me because she doesn’t care that she hasn’t had the monetary resources she would like to have. Instead of complaining or giving up, she has scratched and clawed for every bit of awareness she has generated.

“(It’s) the old argument that, ‘Well, we need more money for healthcare in general and we don’t like to single out specific diseases,'” she spoke in a video following a meeting with Bernie Sanders.

“I should have said, ‘Well, how’s that working for you?’ You’ve got $2 Billion more for the NIH for everybody. So you’re basically telling me the same thing: that my kid can just die, because he doesn’t matter.

“Until we get specific, people, until we look at the most poignant example of neglect in the medical research system, nothing’s going to change. I’m going to fight for it, damn it.”

Reality of Loss

mother's day dipg

Michael and mom, Jenny. Photo: Michael Mosier Defeat DIPG Foundation

Jenny Mosier was also on the Hill that day, lobbying on behalf of DIPG research. She lost her son, Michael, a week after Mother’s Day last year. Jenny, husband Mark, and sister Lila, have championed for Michael through the Michael Mosier Defeat DIPG Foundation ever since.

It has been a labor of both love and pain.

“Michael had been a healthy, active kid, loved playing basketball, soccer, and especially baseball,” writes Jenny in her article, What Motherhood Means to Me, One Year After Losing My Son, in the Huffington Post.

“He was an avid learner with an unbelievable memory that kept us on our toes. His smile lit up the room. One week after his sixth birthday and his first day of kindergarten, we learned he had DIPG, and our world shattered: inoperable, no effective treatments, no cure.”

It’s a reality that has been swept under the rug within the medical community because it affects so few children – 200–400 per year – in comparison to other diseases. But for those 200–400 families each year, there is legitimately no hope. These precious children are losing full lives to this disease and something has to be done about it.

For Tammi, Janet, Jenny, and countless other DIPG mothers, that “something” comes in the form sharing their grief with the world. It’s painful, unbearable, and ugly, but they see it as a necessity.

“Grief is tiring,” Tammi Carr told Angelique Chengelis. “We have two other kids we have to be moving for.

“But at the same time, we’re trying to keep this going. The (ChadTough Foundation, which raises money for DIPG research) is kind of like a baby. It’s Chad’s legacy. It’s what we have left of him. It’s our baby, too.”

Learn more about these foundations at: The ChadTough Foundation | Michael Mosier Defeat DIPG Foundation | Jack’s Angels Foundation

Worrying is toxic

Why Worrying is Toxic for Your Productivity

When you see a quote in two completely different places within a 12-hour span, it’s good to stop and reflect.

For me, it has been Max Lucado’s quote:

Feed your fears and your faith will starve.
Feed your faith and your fears will starve.

I saw this quote yesterday in the context of the fight against DIPG, an inoperable brain tumor found in children, and a cause close to my heart.

The second time I saw this quote, it was in an article on Entrepreneur, “Why Worry? Because We Do. But We Can Kick the Habit.”

This article stuck out to me immediately because I am a chronic worrier. There is something inside my psyche that allows me to believe that worrying equates to control, which may be the most ridiculous assumption I could have.

Lucado’s quote in the context of this article puts into perfect perspective how the act of worrying actually blocks out my productivity.

“A key part in reprogramming the mind for optimal performance and healthy thoughts is to kick the worry habit,” writes Matt Mayberry, a Speaker and Maximum Performance Strategist. “So many people love to worry about every little thing. Half the things people worry about are not even in their control. Most are worrying about things that they can do absolutely nothing about. They are creating stress and negative energy all throughout their entire body when they worry.”

Mayberry provides two ways to “kick the worry habit” in business:

1. Focus on what you can control

Worrying is toxicThis is so important for me. I love being in business for myself, but it wasn’t a gradual process that allowed me to wade in slowly. Considering my personality, diving in head-first is truly the only way I do things anyway, so being “forced” to do so wasn’t really a stretch.

But as I build success in what I’m doing, I find myself obsessing over the gap between where I am versus where I need to be. This is so toxic for my productivity and my psyche, and the ironic part about it is that focusing on my work — what I can control — is the only way I’m going to fill that gap.

“Each and every one of us spends more time than we should on things we have absolutely no control over,” writes Mayberry. “You can’t necessarily control an outcome, but what you can do is put yourself in position to win by focusing on the process and everything that you do have control over.”

2. Make progress every day, and then acknowledge it

This is something I have incorporated into my daily workflow and it has been critical to my mental health. Instead of writing down every single end-goal for every single project I have each and every day, I set small goals that I can achieve. That way I can check them off and feel a sense of accomplishment throughout the day.

“When you focus on making progress each day and then acknowledge it, you begin to feel good about yourself and instantly boost your self-esteem,” writes Mayberry. “You come to the realization that you are better than you were the day before – and that gives you a deep sense of satisfaction.”

I can’t stress enough how important it is to ditch constant worry and dread, whether it’s over the success or failure of your business, your finances, or your workload. The worry quite literally pushes away your ability to solve your problems by consuming your mind and draining your productivity.

So focus on what you can control, set your small goals each day, and get to work on achieving!