Ann Arbor — Tammi Carr and her youngest son, Chad, the bright towhead with the big smile, used to talk a lot about heaven.
The day before he died in November from diffuse intrinsic pontine glioma (DIPG), an operable tumor in a small of the brain stem, he spent hours dividing his candy for family members.
“It was like he was sorting his possessions,” Tammi said.
Everyone eventually left, and Tammi was alone with her son, who along with his parents had prayed for a miracle.
“And when we realized that was not the plan, we prayed for him to not be in pain,” Tammi said. “I told him that whole time, ‘Go to heaven, honey, we’re going to be OK.’ ”
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.”
It has been more than six months since Chad died — he was 5 years old — and this will be Tammi’s first Mother’s Day without her son.
She doesn’t want to be home Sunday. One of her sons, C.J., has an opportunity to play in a basketball tournament in Indiana, and she jumped at that plan.
“I said, ‘Let’s go, that’s where I want to be,’ ” Tammi said. “I want to watch my kids. That’s my joy. That is my saving grace. We’re booked every weekend baseball or basketball tournament until July 4 and I am fine with that.
“For me, idle time isn’t good.”
Emotions defy consistency
Time can be an enemy.
Sometimes it seems there are too many hours in a day, and any free moments become absorbed by mourning.
“Grief is tiring,” said Tammi, wearing an orange cardigan (Chad’s favorite color) and a silver heart necklace with fingerprint impressions of her sons. “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.”
Each person grieves differently and, certainly, there are no rules.
One day follows another, and while that’s consistent, there is no consistency in terms of her emotions.
“I have watched and been proud of Tammi and Jason and their family for the way they have handled the unrelenting pressure that they lived under for those 433 days,” former Michigan coach Lloyd Carr said at the celebration of Chad’s life in November. “I have watched and gained appreciation for the deep and abiding friendships that lightened their burden.”
Six months later, Carr is encouraged watching his son and daughter-in-law and grandsons. He frequents the boys’ practices and games.
“Both of them have done really well,” he said. “They’re strong.”
Tammi has maintained her poise throughout, inspired by something she remembers her father-in-law telling his players years ago when they would visit Mott Children’s Hospital.
He would remind them to “find a cause greater than yourself.”
“So much of what I do is focused on the foundation, and I know I’m thinking about his legacy a lot,” she said. “We just worked on his memorial stone and took the boys with us because we wanted them to be part of that decision.”
Tammi has learned children can grieve differently.
She and Jason, a former Michigan quarterback, take their sons (Tommy and C.J.) to Ele’s Place, a grief center for kids. Tammi, who runs another foundation and has worked closely with Mott, toured Ele’s Place before Chad was diagnosed.
For her sons, who don’t like to talk much with their parents about losing their brother, this has been helpful.
“They come out of there and I ask them what happened and they look at me and say, ‘What happens at Ele’s Place stays at Ele’s Place,’ ” she said, laughing. “And that’s OK because they’re talking and they’ve got kids there who have lost people.”
Jason Carr always has marveled at his wife’s energy. And the situation with Chad, he said, heightened that.
He said the night they received the diagnosis, Tammi crumbled to the floor.
“She laid out on the floor, and we couldn’t get up,” Jason said. “That scared me more than anything.
“But within 24 hours, she went from that and she said, ‘I’m going to get a million kids to pray for this kid.’ Once she had that as her focus, it just turned into this amazing thing.”
Chad Tough’s legacy
There have been lighter moments the past six months for Tammi and her husband.
Jason recently was coaching Tommy’s baseball game when one of the young players tapped him.
“Is it for real Chad Tough’s brother is on the team?” the little boy asked.
Jason smiled and said it was true.
And Tammi was out collecting a loose dog in the neighborhood when she ran into a new neighbor and her son. He asked where Tammi lived and she pointed to her home.
“You live in Chad Tough’s house?” he said incredulously.
“I told him, ‘Yep, you’re right, that’s Chad Tough’s house,’ ” she said, smiling.
Tammi Carr is strong in her belief God works in mysterious ways. She and Jason believe their previous work with Mott prepared them, in a sense, for coping with Chad’s loss. And they believe doors are constantly opening as she and Jason work to ensure Chad’s legacy.
Shortly after Chad’s passing, she visited Tecumseh Middle School to receive a $500 check for the foundation from three girls who made and sold finger scarves after one of the girls saw an ESPN feature on Chad.
Not long after, while driving home from Ohio after receiving the Lauren Hill Award given to the person who most has changed DIPG, they learned of a speech the head of the National Institutes of Health had given.
The man, who controls the purse strings for all government funding for research, shared a story about his granddaughter in Tecumseh, who along with her friends made scarves to honor a little boy named Chad Carr.
“She called her grandfather and asked, ‘Why is there no research for this disease?’ and he said, ‘I’ve learned a lot more about DIPG because of her,’ ” Tammi said. “I was bawling. ... You hear something like that and God’s telling you you’re doing the right thing.
“The way we look at it, it’s the hardest cancer, and if you focus on the hardest one, imagine what would trickle down if you solve it. The fact they’ve paid zero attention to it in 50 years and now there is momentum and people are listening, if Chad’s a part of that, that’s what is important.”
‘Never going to forget’
And that’s why the Carrs will continue to work as long as it takes to find a cure. The ChadTough Foundation has received more than $1 million in donations.
“The worst thing a parent who lost a child can ever feel is that their child has been forgotten,” Tammi said. “I don’t want that. Neither does Jason. That’s why being able to know he’s not going to be forgotten and our goal is for him to make a change in this world.
“We’re never going to forget. ... I’m going to live every day with that hole in my heart. Every day. It’s a huge misconception to think, ‘It’s never going to be me.’ Even if it’s cancer, you say, ‘OK, how do we fight it?’ You don’t with this one.”
Tammi always has been vibrant with a big personality.
She still smiles easily, but she knows she is forever changed with the loss of her youngest child.
“I am so not the same person I was on so many levels,” she said. “Things change when this happens. Friendships change. Motivation changes. Perspective changes. Family changes. Priorities change. I’ll never be the same person, but in some ways I’ll be a better person. But it’s a horrible way to learn how to be one.
“There will be good things that come out of it. That’s the only way it’s bearable.”