This morning Scarlett and I were sitting at the dining room table where she was eating a typical breakfast of spaghetti and meatballs and I was drinking a cup of tea.
“I didn’t blog yesterday,” I told her, as if admitting something scandalous.
She seemed unperturbed, busy aiming an entire handful of grated parmesan cheese directly into her mouth.
“Please stop doing that,” I said, and then had a flashback to my own childhood and visits to see my Aunt Theresa and Uncle John. Theresa was my grandmother’s sister and everything about her and Uncle John seemed very old and very Italian. Their couch was covered in plastic. The fruit on their coffee table was wax. When we arrived in the morning, they were always eating cold spaghetti, and Uncle John would pinch our cheeks so hard they stayed pink for the remainder of the visit.
Scarlett continued eating her spaghetti, oblivious to my distraction.
“What do you think I should blog about?” I asked her.
“Well,” she said thoughtfully, “You could definitely blog about Otto throwing up and how Jack almost dropped my tooth fairy in the throw up.”
“I don’t think so,” I said, because I’m tired of talking about throw up, which seems to be the most popular conversation in our house these days, followed closely by anything poop-related.
My plan had been to blog about the ALS TDI Leadership Summit, which I watched from the comfort of Scarlett’s room on Friday. There were scientific presentations, panels, and the leadership awards, including speeches by the recipients.
I sat at my computer for hours, streaming the live feed from a hotel in Boston, and frequently being interrupted by ads. Beth Hebron accepted the Fran Delaney Challenge and Respect Award, and gave a speech about what needs to be done to speed up clinical trials and access to medication. She called our eventual cure “Prince Charming.”
Bobby Forster graciously accepted the Mary Lou Krauseneck Courage & Love Award. Team Godfather—how cool is that name—made a video accepting their Stephen Milne Adventurous Spirit Award. I was also a recipient of that award, and just as TDI’s Rob Goldstein was presenting it, my feed cut to ads. So I watched a couple of Bourbon commercials, and when the feed started up again my video was almost over. It was no big deal; obviously I made the video, so I’d seen it before. But I had been interested in seeing if Stephen Finger and Jay Smith would get mad at me for calling them bald.
I later found out they did not get mad. Also, Stephen is growing a full head of hair on his lower face, so he’s not really missing anything.
Matt Bellina and Jay then accepted their Stephen Heywood Patients Today Awards. Matt sent a video that was aired commercial free, and then Jay cruised up and made a great speech mainly devoted to his awesome wife Missy and how he continues to fight ALS because he is afraid of what she would do to him if he stopped.
Bobby Forster returned to the stage to present Carol Hamilton with the inaugural ALS Community Hope Award. Carol is a real force, and her work on behalf of people with ALS is deeply appreciated. The award—Michele Dupree’s brainchild—was well deserved.
It was fun to see everyone, if only from afar. When Dr. Steve Perrin closed down the proceedings, telling everyone to “go have a glass of wine,” I found myself wishing I could just beam into the Sheraton and meet my friends at the bar. Perhaps one day that technology will be possible. But let’s cure ALS first—I’m happy to say there are a lot of brilliant people on the case.
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Sarah.
Thank you for the remembrance of my grandparents. I have very similar memories, although mine included every Sunday for 30+ years.
I recently was in Italy where I met several Del Giorno’s including my grandparent’s grandnephew, my first cousin. I saw the building where my grandfather was born.
It’s wonderful to feel the connection of family. Your blog today helped to make that connection realized again. An always welcomed emotion.
Best wishes,
John
Sarah, You’ve-personally known more brave and brilliant people, even if by phone or blog, than I’ve heard about in my 89 years. There is an upside to everything though I find it hard to believe at times.. Love always, N
Sarah: Sorry I missed this blog the day you created it. I to remember the days visiting my parents with my 3 daughters.It was usually on Saturday morning and if you recall my mother always had a large pot of soup stock on the stove. My children loved her soup so when grandma asked them what they wanted to eat. They would request her soup. Now I love grandma’s soup but at 9:00 in the morning it’s the last thing I would think of eating. Well grandma would admonish me for telling the girls they could eat soup first thing in the morning and since all she had to do was warm up the soup and add some ingredients. Needles to say the smell and taste of Grandma’s soup was inviting. So every time we visited Grand ma and Grandpa DelGiorno on Saturday morning we ate soup for breakfeast.