A four letter acronym changed the course of Tammi Carr’s life in 2014 and continues to shape her future. Carr’s son, Chad was diagnosed with an inoperable brain tumor called Diffuse Intrinsic Pontine Glioma (DIPG) and three days later, he spent his 4th birthday at Mott Children’s Hospital in Ann Arbor, Michigan. Chad underwent thirty rounds of radiation at Mott and then participated in a clinical trial at Memorial Sloan Kettering Cancer Center in New York, but lost the battle fourteen months later.
Within days of being diagnosed, a family friend, came up with the slogan “ChadTough” as a way for people to show support for Chad. The ChadTough Foundation was founded in 2015 and continues to raise awareness and research funds for DIPG.
“We only started the foundation because there was this demand. There was money and people saying I want to do this and we felt like we had to. I didn’t expect it to grow in five years to this level. I also believe that my son had a job to do and he was inspirational. Sharing his story brought people into the fold and attention to this disease that has had zero. The reality is that brain tumors are the leading cause of cancer death in kids. Accidents kill the most kids and then cancer. This is the worst brain tumor of them all and if we can solve the worst one, the floodgates are going to open for all the rest,” she explains.
Carr’s priorities shifted after Chad’s death. “I’ve changed a lot. I was one of those people who went on all cylinders at all times: balancing three kids, two jobs and go go go. I’ve always been good at juggling and now I’m choosing not to. I was good before about being around, but I was distracted a lot,” she admits.
Her honesty and vulnerability about healing and trauma reveal a woman who owns her pain and isn’t afraid to talk about her faith and the importance of mental health services.
“Nobody wants my life. People say, ‘Oh God, please don’t let me be like her.’ and it’s true because there’s nothing worse for a mom. Outliving your child goes against nature. My faith is where my strength came from. People ask if I’m angry at God and I think ‘why not me, why not our family.’ I had a sense of peace during that whole experience that doesn’t seem possible. People don’t want to ruffle feathers talking about faith, but this is my truth,” she says.
Carr believes most of us live in a bubble and feel insulated from tragedy. She acknowledges she was guilty of this herself prior to Chad’s death.
“Life can be hard and I think that’s something that we don’t hear enough. I think people feel like they’re immune to certain things and in reality bad things happen all the time. With cancer it doesn’t discriminate. I still go through very hard days often and I’m getting help. This is nothing you get over. You learn how to become the new you,” Carr reveals.
She credits her time as a psychology undergrad at the University of Michigan for teaching her the importance of mental health and believes that background encouraged her to seek help when she needed it.
“Mental health is a really important piece of this puzzle. When you go through something like this, you have to be cognizant of what you’re feeling. I’ve always been very open to receiving help. I’ve had a psychologist since before Chad passed and I still see her once every two weeks. I think being a psychology major, I always knew the importance of it and wasn’t afraid to get the help I needed and my family needed. When you’re starting to come out of the fog, you can recognize symptoms of the trauma. I’m always open to looking for signs and understanding the importance of mental health because of my time at Michigan,” she says.
Carr believes everyone handles grief differently and some may not be comfortable with therapy, but she adds, “Sharing feelings and thoughts with someone who has talked to others in similar situations is more beneficial than stuffing it down. Professionals can also give you the tools to help deal with the trauma.”
Reflecting on her time in Ann Arbor, she is grateful for her experience at Michigan and encourages students to take advantage of a wide variety of opportunities. Her career path was fundraising, but she credits psychology classes for giving her a solid background in relating with people and life.
She says, “You never know how your degree is going to impact you down the road. A great thing about a psychology degree is that it can impact you no matter what field you go into. Dive into different opportunities as much as you can to figure out what you want to do. There’s so many resources here and so many opportunities to dip your toe in the water and try something new.
”Her family are all handling new roles and changed their entire lives to make the ChadTough Foundation possible. Her husband, Jason, quit his job to run the foundation, she serves on the Board of Directors and her two boys volunteer at various ChadTough events.
“People will ask if we’re going to start an endowment and the answer is no. Our goal is to get out of business and solve this thing and not grow something into perpetuity. We have researchers now telling us they believe they’re going to find a cure in their lifetime and that’s a big deal. I know that my son will have a huge part of that when it happens and that will be an incredible legacy,” Carr says.
Even with the notoriety brought by her father-in-law, former University of Michigan football coach Lloyd Carr, she was surprised at the way the Michigan community and sports community embraced ChadTough. She’s thrilled it’s grown into the fabric of the maize and blue but credits something bigger for the foundation’s continued success.
She explains, “There was no master plan for this to become what it’s become. We’re going to hit ten million dollars and it’s hard to wrap your head around that when it wasn’t a plan. I’ve been in fundraising and this momentum is a higher power saying it’s supposed to happen. We’re following Chad’s lead and we always have.”
Finding joy after loss isn’t an easy task, but Carr still fights for it and sees the bigger picture.
“Life is like the back of a tapestry with all these knots and it makes no sense when you look at them and it’s ugly sometimes. You don’t know how these knots intersect and why till you can turn it over and see this beautiful picture. Some people don’t ever see the beauty. We’ve got lots of ugly knots and we’re blessed to see the pretty picture of Chad’s impact,” she says.