It was a dark and stormy night.
It wasn’t, but I bet you’re all picturing Snoopy perched atop his doghouse, banging away on the keys of his typewriter, aren’t you? You’re not? Well then you’re much, much younger than me. You’re lucky in that way, but it’s sad you missed out on the Peanuts greatness. Wow. It didn’t take long at all for me to steer off course on this post now, did it? I call a do-over.
It was a dark and rainy day. That’s better.
It was a dark and rainy day, but muscular dystrophy doesn’t allow for rain delays, so neither did the walk. Can you feel triumphant and terrified at the same time? That. Sunday was a hard day.
I have been saying for months now that I will find a way to capture in words the gratitude I have felt in my heart. Turns out, there is simply no way to accomplish that. Instead, I will let pictures speak the thousand words they are said to do.The day before the event, I received a text from my friend Sue, who reminded me that exactly one year ago, I provided her words of support and comfort as she sat beside her dying father. She wanted me to know that my message made a difference to her, and meant a lot, meant enough to tell me a year later that I helped her. And she sent me her own message of love and support. And yeah, I cried when I read her message. She helped me right back. I am a lot of work sometimes, but I must be doing something right to have latched onto and maintained friendships with truly wonderful people.
The MDA invites a few of its clients and parents to speak at the walk kick-off. It’s painful, hopeful, emotional, and I’m not sure a dry eye can be found in the room. My son had to step out, and I pretty much wanted to die right then for him, but my friend Jill, no fair weather friend she, showed up at precisely that moment. I was stunned to see her, and her timing was perfection. A much-needed distraction at the most-needed moment.Shortly before the walk kick-off, my little guy’s best friend’s mom texted me, saying she and E would be arriving late to the walk. I didn’t even know she intended to come. We met outside the Aquatic and Reptile Center, and as we walked in, I thanked her for coming. She told me that her son said he wouldn’t have wanted to come if it were for anyone other than my big kid, because “he’s kind of like my brother, you know.” And that is when I really cried. She hugged me while I cried, right there in front of the giant iguanas and jellyfish. Because you can’t stand there and cry at the zoo, and because iguanas and jellyfish are really unsympathetic, I began to hum my personal battle cry, my song, to shore up my resolve. Singin’ in the rain. Well, singing in my head anyway, technically I was humming out loud. Quietly. But I made it.
You know who I don’t have a game day picture of? My boy. My boy, the reason I do this, all of this. Didn’t get a photo of him that day. He kinda had his own thing going on, and he’s thirteen, you know. Not super happy to be photographed on his best day, so I didn’t push it.I asked. You answered. 5, 399 times you answered. I will never feel lucky that my son has this diagnosis. My son is more than a pre-existing condition, and I hope against hope that this, that MD, doesn’t become what defines him. But this diagnosis has shown me the very best in people–people I am beyond lucky to know, people I don’t know, people I know only through my writing, and some souls whose identities remain elusive answered when I asked. Thank you. Love with a capital L to you all.