Monthly Archives: May 2015

For My Mom on Her Birthday

Today is my mom’s birthday. I would post how old she is, but I’m not sure if that sort of thing is acceptable, even on one’s own blog, so I’ll just say that yesterday when Scarlett was asked that question, she responded “49.” Let’s go with that. Happy 49th birthday, Mom!

I was scrolling through old blog posts I’ve written about my mother: her visits to see me in New York, back when I was childless and she was a professional grandchild advocate (“I don’t even care if you get married!”); our trip to Florida when my parents met Rob’s parents for the first time and my mom and his stepdad bonded over light beer with ice in it and a mutual inability to stop themselves from overdosing on mixed nuts; our wedding weekend in New York (because that thing about her not caring if we got married was nonsense); her time in San Francisco right after Scarlett was born, when she saved my sanity by going everywhere with me and not judging me when I cried during the opening credits to the TV show Parenthood, then in its very first season, just like I was.

But that’s just the stuff I wrote about. When I was younger, my mom was a source of great pride to me. She was a teacher, she did Jazzercise, she had a ton of friends. She wore little short shorts and bandanas, and in the summers she was as brown as a leaf, and smelled like tanning oil. She had 4 sisters, 3 brothers, and parents who lived a mile from us, and our house was always overflowing with family. Read More>

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How to Talk

Here is what sometimes happens when I ask Scarlett to choose a book to read. She goes into her room, and returns with my 368-page paperback copy of How to Talk So Kids Will Listen and Listen So Kids Will Talk. “This.”

“Why was that in your room?” I ask.

She shrugs. “It’s mine.”

Then she climbs into my lap and flips pages until we get to the illustrations of parents saying the “wrong” and “right” things to their children. Scarlett particularly enjoys the sections where a parent is nagging a kid about something, like leaving a door open or not feeding the dog. I do the nagging, and then she reads the recommended approach in a singsong voice. “Johnny, the dog.”

I bought the book when she was two, and it had nothing to do with my ALS. I wanted to make sure that as she grew, we continued to have a relationship that was open and candid. I wanted to answer her questions in ways that would encourage her to keep asking them (although the book advises responding to many questions with the line, “What do you think?” and when I try that, Scarlett becomes apoplectic.) Read More>

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Speed4Deb

Today I am featuring the remarkable story of Deb McQueen-Quinn, and I’ll keep this post short, to allow you to focus on Deb’s tale of familial ALS.

However, there are a few things you should know about this lovely woman. She is a seamstress, incredibly talented, and very thoughtful. Scarlett recently opened a package in the mail, and inside were 30 handmade headbands, sent by Deb. Rainbow, heart-print, Minnie Mouse, 4-leaf clovers, exploding fireworks, flowers. Scarlett sat in her pile of headbands and smiled. And that was exactly Deb’s intention.

I got to meet Deb at ALS TDI’s fundraising gala last November. She rolled her wheelchair up to mine, and introduced herself. She explained that she has help with her sewing now, as it’s hard on her hands. She looked down at her stockinged feet and told me, “Shoes weren’t happening tonight.” We laughed. That night, Deb handed out tote bags she had made, many of them personalized for her friends with ALS.

At the 2014 ALS TDI leadership summit, Deb was the recipient of the Fran Delaney Award, which is presented annually to a person who has shown true leadership within their community. That is definitely Deb.

And a few weeks ago, I got a card in the mail. It was from Deb, a hug in an envelope, because she had been thinking about me.

This fabulous woman deserves an end to ALS more than anyone I know. She and her family have been through enough. And still she smiles, and laughs, and does things for others. A true leader, indeed.

Read Deb McQueen-Quinn’s story here.

Deb Diagnosed at 45

Deb Diagnosed at 45

|Categories: Cure, Diagnosis, Faces, Life | Tags: , , | Permalink