One of the most rewarding parts of the eight years I worked for Baystate Health System was getting to know some of the kids and families treated by Baystate Children's Hospital. Sometimes I'd do phone interviews for newsletter articles; or we'd film in their homes for fundraising videos or commercials. Other times we filmed or took pictures of outpatient procedures or inpatient hospital stays. It's been 13 years now, since I met my first child. I think their names, their stories, will stay with me forever.
There was Michael, and Jack, Michelle, and Theresa. Some were born far too early. Some almost died but conquered the odds. Others fought hard but lost. Cory waited years and years and finally received a liver and stomach transplant that transformed his life. He's in college now. Joey was diagnosed with Down syndrome, then got leukemia, and almost died of a ruptured appendix in the process, but made it through still smiling. Lexi, so sweet with her jean jacket and bracelets and the awkward speak of almost teenager-hood wowed me with her words on camera about her experience with cancer. The cancer shockingly came back out of nowhere and took her a year later.
And Matthew. Matthew, who had cystic fibrosis, always jumps into my mind. He was 15 when we interviewed him back in 2001 and refreshingly honest. Teenagers are like that. He didn't have much to say and didn't try to sound fancy. He admitted his illness sucked in a lot of ways. But he went on living his life and finding ways to enjoy the journey. At one point we filmed him on his skateboard, skating in circles. Charlie, the videographer, moved with him as he went around and around, talking to the camera about what it's like to live with a disease that claims most people by the age of 30.
The other day I found the article I also wrote about Matthew, for the Children's Miracle Network telethon, to raise money for the Children's Hospital. I had interviewed his mom as well. I remembered the expression in her eyes, tired but also somehow strong. "If you don't live in today, you're going to worry about tomorrow's possibilities and yesterday's depressions," she had said. "We don't treat Matthew as if he has a disease. It's just a different way of life."
Those words spoken almost a decade ago have rung through my head a lot over the past year. A lot.
At Bible study the other day the group leaders were praying before it started and someone said simply, "God, I thank you that you don't waste anything that happens to us."
That hit me in a new way, such that I didn't hear much of the rest of the prayer, I hate to say.
God doesn't waste a thing. He doesn't waste our pain; our embarrassments; or even the interactions we have with people in our everyday lives. These kids were in my life for a reason, or perhaps many reasons.
I've carried the Children's Hospital kids around with me for awhile, and I'm thankful for that. It's cheezy to call them and their parents heroes, but I will say that they inspire me to perservere. I'll be lying there at night, for example, maybe feeling a little sorry for myself, and suddenly Joey's big grin will pop in front of me. Joey in his hospital gown, padding down the halls, waiting for another chemo treatment, his parents trying to catch up with him. I can do this, I'm reminded. One foot in front of the other.
Last year I was up at the Children's Hospital in the Adolescent Unit and saw some fabulous framed color nature photographs lining the halls. I saw a small sign near them. They were Matthew Jarrett's photos. He hasn't lost his fight yet, and is doing his part to capture some of the beauty in this world.
Tuesday, June 22, 2010
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