Thursday, December 06, 2012

A Funny Thing Happened On the Way to the Radiothon

This morning I volunteered to work the phone bank at the KS95 for Kids radiothon*. This radiothon benefits my employer, Gillette Children's Specialty Healthcare, and Children's Cancer Research Fund.

It was 4:55 a.m. in the empty, dark and quiet mall. I got on the elevator to get to the volunteer check-in room, and saw another person walking towards the elevators as well, so I held the door. Who else is in the mall at this hour, anyways, besides other people volunteering for the radiothon?

The man got in, took one look at me and said, "Jenny?"

I have to be honest, I didn't recognize him at first. He wasn't from any of the organizations I knew involved with the radiothon, but he clearly knew me. Turns out he and I worked together nearly 7 years ago at my former place of employment. He had only worked there for a year before life took him in a different direction and he had to leave the job, but he still remembered me and eventually I remembered him.

We talked about what we'd been doing in the years between -- jobs, kids, moving, trips. The last time we had seen each other my kids were ages 1 and 3 and he didn't yet have children. He has two boys now, ages 3 and 5.

Nothing like a conversation like that to make you realize how quickly your kids are growing up.

I asked him how he came to volunteer his time at the radiothon, knowing that we had lots of corporate sponsors whose employees volunteer at the phone bank. But he was doing this on his own because his older son is seen at Gillette. He was just diagnosed with muscular dystrophy a year and a half ago, and they've been incredibly grateful for their care at Gillette.

I said I was sorry for his diagnosis, but he waved it off. "He's just a normal kid, like anybody else." He went on to tell me stories of how easy-going he is, how he loves to play with his friends, loves swimming in the lake close to their house and has embraced kindergarten.

We kept talking, and later on came back to his son's diagnosis. I asked how they discovered he had MD, and he said that his wife noticed that their son seemed to struggle in comparison to other kids to do "normal kid things," like climb the monkey bars or run around the playground. They had taken him to their pediatrician a few times and finally, when the differences became more pronounced, the doctor ordered a few tests. That's when the diagnosis of muscular dystrophy came back.

Then he told me something that made my heart jump into my throat. The average life expectancy for a child with his type of muscular dystrophy is 25 years. His muscles will deterioriate with age. They know that as he grows his mobility will decrease, he will eventually need a wheelchair and this disease will eventually result in his death.

They already know they are going to outlive their son.

He said that his wife's parents are having a really hard time with the diagnosis, and even a year and a half later they struggle to believe that this beautiful little boy, so bright and fun, will not live long into adulthood.

But really, he said, what are we going to do, mope around and waste the time we do have with him? No, he said, we're going to live every day to the fullest, give him every life experience we can and love him for as long as we have him.

And then he told me not to cry, but it was too late.

*I feel compelled to remind my readers that I write this blog from my own personal perspective and not on behalf of my employer or any of Gillette's partners.


  1. Wow, just wow. Love their attitude, love your writing. And yes, I was crying also by the end.

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  3. I didn't cry, but you put it well. I am amazed at the resilience people have to over come such issues. Pat, my secretary at Crisp has a husband diagnosed with a disease that is similar to Parkinson's, only no shaking. The outcome is terminal, the deterioration is slow but steady. He already has difficulty with balance, has a feeding tube and cannot be understood when he talks. Yet is spirit is indomitable and he more concerned about his wife having to care for him than he is for himself.

  4. yup, got a little weepy there.

  5. Thanks for the warning! I sit in a glass office, so the tissue was ready.

  6. God bless people like this who set such a glowing example for the rest of us when they get these kind of adversities. And he is so right -- why waste what we have today instead of enjoying every minute we do have?