Fitness, from a whole 'nother perspective

This afternoon, I received a note about a fundraiser for a local child who has just been diagnosed with Spinal Muscular Atrophy. He's the son of one of the main teachers at Writers and Books, an independent writing organization / school here in Rochester where Madison takes those wonderful writing classes.

Sally, the mom, is fabulous. I've loved working with her on projects during the past year, and have been grateful for her combination of formality and familiarity when introducing the kids in Madison's writing class at a special reading event this past spring.

Spinal Muscular Atrophy means something to me: My freshman year roommate, Marni, had it. It's a genetic disorder of the large skeletal muscles; Marni could type and scoot her hands from side to side, but she couldn't lift her arms, and was in a wheelchair. The condition is usually degenerative, even though for some reason Marni's deterioration had slowed or stopped by the time she arrived at Penn. So I felt terrible when I heard about Sally's son Oscar.

It's so often the case when one hears about a friend's tragedy that there is nothing one can really do to help. But in this case, I could. The fundraiser to pay for altering their house to make it wheelchair-accessible is tomorrow at a local art gallery, and there are activities for kids at the event. So at least I could help get the word out with a special KidsOutAndAbout.com notice to 9000 people.

I called Sally directly at the office, and we talked for a little while. We talked about the event, and also about SMA and how the science has progressed in the 20 years since I last really paid attention. I told her all about Marni and her double major at Penn and her PhD from Berkeley and her professorship at Stanford and her cool equipped van that she drove herself starting at age 18.

I could hear the story giving Sally hope. I could hear the eagerness in her voice as I talked with her about all of Marni's achievements. She asked lots of questions. She asked for Marni's name. I had the feeling that she was going to go look her up and see if she could learn about what Marni's been up to, to get some hope from the accomplishments of an adult with the same condition.

So that's what I did after writing my special newsletter: I googled Marni. And, damn it, I found out she died in 2007, of respiratory failure, while on vacation with her parents in Costa Rica. So what Sally is mostly going to find when she looks up Marni Goldman is all of this memorial stuff, scholarships and whatnot, in Marni's name. Damn it all.

And so of course for the rest of the day, I couldn't stop looking at my own babies, particularly Madison, especially today, Day 3 of Project Run. It was another successful morning of running with her in the Glen. As we were jogging along, she was telling me how strong and healthy and athletic she's going to be someday. I'm glad she has goals. But of course, this afternoon and evening, all I can see is how beautiful she is NOW: her beautiful strong legs, and her beautiful strong arms, and her beautiful strong lungs.