As a Certified Child Life Specialist I have worked with children facing traumatic, unimaginable pain and suffering from illness and injury. The entire family is affected as they cope with a diagnosis, treatment, hospitalizations and loss of control. The medical team works closely with the child and their caregivers, providing support and including them in decisions; when children have a voice, they build resiliency and cope much better.
The team aspect is a key component in a child’s overall health and it shouldn’t end in the hospital. Children with a chronic illness are like any other healthy kid; they want to feel normal and included. Team IMPACT does just that. They connect children with a chronic illness to a college sports team and make them part of the team.
I am very excited to introduce Sarah, the mother of Ben who has been battling neuroblastoma for over ten years of his life. Ben has been connected with Team IMPACT and is an official member of the men’s soccer team at the University of Denver.
Here is Ben’s story, first featured on Stronger Than I Look
A few months ago, my dear friend and fellow cancer mom, Sarah, introduced me to an organization called “Team IMPACT.” Their goal is to pair critically ill children with a collegiate sports team, all with the mission of improving the child’s quality of life through the “power of team.” Her nine-year-old daughter and cancer survivor, Jamie, was recently paired with the Regis Women’s Soccer team and was LOVING the experience.
Jamie is a super outgoing type of kid. My Ben, however, is a solo kind of kid. He’s spent so much of his life making friends only to lose them to cancer. Or making friends at school only to lose them because he couldn’t make it through a full day – let alone a whole year – of school. He is fine with his solitary status: playing ridiculous amounts of video games or watching YouTube videos on his phone. It’s his comfort. In fact, I know he did so well with his MIBG therapy isolation because he was equipped with an iPad and all the time in the world to watch videos. If there’s a cute animal video out there, Ben has seen it.
Not that Ben is antisocial, quite the opposite. He is the most compassionate kid I’ve ever met. He genuinely has a heart for others who are suffering or having a hard time, often putting his critical status on the back burner to attend to others’ needs. His heart is huge. I think what it has come to, however, is that he simply doesn’t want others to worry about him. From what I’ve heard him say to others, he has the impression that he’s a burden. He recently told his grandpa that he wishes people didn’t have to worry about him. He’s sorry that people worry about him. He doesn’t want to be in the spotlight or be a spokesperson (despite having an amazing story to share) or bring attention to himself. It’s way out of his comfort level.
So, when Sarah introduced this organization to me, my first thought was “no way will Ben be interested.” First of all, he’s never been a part of a team. Second, he’s not a sports kind of guy (with the exception of following the Avalanche with his hockey obsessed mother.) Third, he will hate the idea that this will put him in some sort of a spotlight. But, what the hell. I’ll ask him. Nothing to lose.
I watched as his amazing eyebrows knitted together and raised as I was explaining what Team IMPACT was all about. He listened intently. And when I was finished explaining, his first question was, “Do I have to say anything?” I told him that he’d have to interact with his teammates but I didn’t think he’d be called on to make any inspirational speeches. He surprised me when he said, “I’d like to do it.” I immediately started the process of getting him paired with a team when cancer struck again. The summer – as you all know – was filled with yet another round of trying to fight the stupid beast hell-bent on taking Ben from me. Team IMPACT would have to wait.
Thankfully, as my overwhelmed state focused solely on supporting Ben, Team IMPACT kept reaching out to check on how Ben was doing. I knew immediately that this was a special organization. THEY did the work. I didn’t have to reach out at all. And once we got to a place where Ben was doing better, they got right on it and paired Ben with an AMAZING group of guys: The Men’s Soccer team at the University of Denver.
Now, we know minimal about soccer, but Ben was excited about the pairing. Coach Bobby Muuss invited us to come to Vail for Ben’s “draft.” The minute I walked in and saw Ben’s name, I started to cry. They were so ready to make Ben a part of their team. Player after player came up to us and introduced themselves, shaking our hands and letting us know how excited they were to have Ben on the team. It was overwhelmingly beautiful. The thought of this group of guys caring about my son blew me away.
Ben wasn’t feeling well that weekend – and I’m sure he was way out of his comfort zone – but he still stated that he was excited to be a part of the team. My emotions, however, were all over the place. I guess when I first saw Ben’s name projected on the wall, I was hit with the distinct possibility that this will never truly occur for my son. His disease statistically dictates that he will not live long enough to go to college, let alone have the strength to play sports. Not at a college, not in high school, not even on a playground. But, lately I’ve been obsessed with living in the moment (mostly due to my amazing counselor telling me that I MUST live this way) so I drank in the beauty of this group of wonderful young men wanting my son to be on their team. It was a priceless moment that helped mend my broken heart.
Ben’s had some physical ups and downs lately. He’s been so tired. But his teammates have sent encouraging messages and videos offering support. I think Ben likes that. It’s hard to tell what Ben’s thinking sometimes, but I have a good idea based on those eyebrows of his. His expression can show no indication of what he’s feeling but I’ve deciphered so much based on those eyebrows… and when they raised up during the viewing of a recent video the team posted offering their support, I know Ben was touched by their sentiment.
Ben went to his first game last night. He sat on the bench with his teammates while Madeline and I sat in the stands. I found myself only occasionally glancing over at Ben – I knew the guys would watch out for him (he has low platelets right now and a ball to the face could leave a mark.) Madeline and I cheered the team on to a 2-1 win. But the most amazing moment was when I glanced over to see the entire team – including Ben – jump off the bench during an exciting moment of the game. My heart soared.
Getting to see that – watching Ben being a part of the team and getting excited over something that he’s only beginning to understand – did my heart a lot of good. Any “normalcy” I get to experience with Ben feeds my weary soul. I didn’t realize how much I was craving that. I just didn’t understand how I would feel to watch my son simply enjoy such a moment.
And when he came off the field after the game, he gave us a high-five. He expressed how much fun he had, how much he enjoyed the excitement, and couldn’t wait to do it again. As we walked through the halls of the Ritchie Center of DU – the sports complex on campus – Ben stated, “I sure would love to go here someday.”
Yes, Ben. We’ll have to rob a bank (since I am still paying for my own DU experience 14 years later) but I sure would love for you to go here, too.
Thank you, Team IMPACT. Thank you, Coach Bobby Muuss. Thank you, fine young men of the DU Men’s Soccer team. And thank you, Sarah Crook, for loving us enough to know we needed this. You are the absolute best.
To learn more about Ben and his strong, advocating mom, Sarah, you can follow her blog at Stronger Than I Look.
We encourage parents, medical team members and child life specialists to reach out to Team IMPACT to connect a child with a local college team. Click here to learn more about their amazing organization and how you can get involved or follow them on Twitter, Instagram and Facebook
Giving More than Hugs
The Creation of Hope Has Fun