The most valuable player

A student describes what it’s like to watch her younger brother play flag football despite having cystic fibrosis.

Whenever I watch one of my little brother’s flag football games, it’s hard for me to stop tears from welling up in my eyes. I watch his little legs carry him across the field as fast as they can, as his teammates cheer for him. I pretend that the crisp, fall air is to blame for my stuffy nose, but it’s really the pride that comes with seeing my brother do things that doctors said he never would.

Tommy was diagnosed with cystic fibrosis in utero, and I was 8 years old when he was born. We couldn’t bring him home from the hospital for three months, and during what felt like 1 million hospital visits, I realized I loved him so much that I began wishing it was me in the Neonatal Intensive Care Unit instead of my innocent, brand-new little brother.

Because of the severity of his disease, it was hard to picture him doing things that other kids do — like play sports. Cystic fibrosis causes persistent coughing and even lung infections and extensive damage due to a thick buildup of mucus in the lungs; It can be compared to breathing through a coffee straw constantly. This malicious mucus also develops in the pancreas and other organs, which prevents proper digestion and nutrient absorption.

SASHA LASAKOW / THE TEMPLE NEWS

Because of his cystic fibrosis, Tommy acquired cirrhosis of the liver, which caused his spleen to enlarge. Even if he played a no-contact sport, he’d have to wear a bulky spleen guard under his clothes and be extremely careful not to collide with anyone. At least, that’s what everyone thought.

The day before I turned 15, my mom’s phone rang with a call that changed Tommy’s life for the better and gave my entire family a new definition of hope. And as night turned into the early hours of my birthday, I knew I had gotten the best gift of all: my brother, my best friend, was getting a liver donation from an anonymous young person who had lost their life.

Now, I can’t begin to describe the chilling rush of emotions I get, as I sit on my pink camping chair and wave at my brother dashing down the field. I feel thankful for his donor, because I know that the most valuable player wouldn’t be on the field if it weren’t for them. I feel empowered by my parents’ bravery for letting him be active when I know they really want to encase him in bubble wrap to keep him safe forever. I even feel heartache for the kids who aren’t as fortunate as Tommy — who are still on the waiting list for a transplant, or whose cystic fibrosis is just too severe for physical activity.

But, most of all, I feel humbled, because no matter how hard it gets for him to breathe, Tommy just keeps running down the field.

Contact sports are still out of the question for Tommy, and cystic fibrosis will always negatively influence different aspects of his life until a cure is found. But during his flag football games, I like to believe he’s purely living in the moment: focused on winning the game with his friends and not at all on the breathing treatments he’ll have to do when we get home.

In a way, I think that seeing Tommy’s quality of life improve actually improved my own life. I’ll never be satisfied until there is a cure so that my brother and others who suffer from this vicious, progressive disease can find relief. But experiencing life with a brother who constantly defies the odds brings me a deep personal inner strength. Whenever I need confidence, I just picture Tommy on the field, and I know that nothing is impossible.

Jayna Schaffer

can be reached at jayna.alexandra.schaffer@temple.edu
Or you can follow Jayna on Twitter @jaynaalexandra
Follow The Temple News @TheTempleNews

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