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
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
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.”