San Francisco

That's the view from my big white bed where I'm sitting, tapping this out on my phone. If I got up and walked out there, I'd see this:

Yesterday was pretty great and not a little overwhelming. My presentation went well -- I started with notes but quickly went off-notes, if that's an expression, and during the panel part responded a bit testily to some questions.  It felt exhilarating and exhausting telling Sophie's story to this group of people. Thank you for watching the livestream.  Thank you for your emails -- from all over the world. I hear all of you, and they meant so much.

Here's a photo of one of my beautiful new friends, Cindy, and the equally beautiful Joel Stanley -- one of those Stanley brothers who pioneered Charlotte's Web.

My favorite comment after my presentation was from some guy who approached me and said, You were like a bomb that was dropped into the room! 


If you can't be a bombshell, be a bomb.

Last night my dear friend Sally of Maggie World picked me up and drove me around the city. We had dinner in a tiny old Italian restaurant in North Beach. I had red sangria, and we shared an amaxing appetizer of burrata cheese and tiny fresh tomatoes with olive oil and pesto. Oh, my god, was it good. Then I had sardines and spaghetti -- I ate every single bit, including the bones. We sat upstairs in a bright red room with a ceiling so low you had to duck your head. We were seated at a communal table, right by the window. It was charming.

Now I need to get out of bed and on with the day!

Maggie Margaret McDonald

It's with a heavy, heavy heart that I dedicate today's post to Maggie McDonald, one of the brightest lights to shine in our community. Some of you might know Maggie from her mother Sally's wonderful blog titled Maggie World. That's where I came to know her, lighting on her shining face, reading of her raucous sense of humor and her dogged persistence to live life joyfully despite serious disability. I had the pleasure of meeting Maggie in person several years ago when I visited San Francisco, and I can still remember her riotous joke-telling -- Maggie couldn't talk, but she used an augmentive communication device and loved a good joke, told me several the afternoon we sat in her house. I texted Sally on Saturday morning, expecting to get together with them again. I had hoped Sally and Maggie would join us in Golden Gate Park on another beautiful day. I looked forward to hearing some more jokes and to laughing with Sally, too, whose dark sense of humor easily rivals my own. Sally called me, though, and told me that they had lost their girl the night before, unexpectedly. Unexpectedly because while those of us in this extreme parenting world might expect to live beyond our children, it's still shocking, still unexpected when they leave us. My heart goes out to Sally, her dear husband Steve and their beautiful sons, Tim and Eddie. I am blessed to have gotten to know Maggie through her mother's words and then my visit with her, but I'm going to miss her. We all will.

Sally debunks bullsh$%# (cause I can't put Sally's name in the same line as a curse word!)

Sally of Maggie World wrote a letter to the editor of The San Francisco Chronicle about yesterday's article discussing impending cuts to California Children's Services. It's short but sweet. You should read it, and then go over and visit her blog Maggie World, where she chronicles life with her hilarious, wonderful daughter Maggie.

And then go out and make a stink of your own!

Maggie's World Touching Mine

Two Jewish women, facing each other in Tunisia

Though there are thousands of parents similarly situated, society really does not have a convenient slot for us. We are in between slots. Though the focus of our life is caregiving for our children, we do not really fall into the “stay at home mom” category. But we don't work outside the home so we are not professionals either. We are knowledgeable unlicensed medical providers and social workers.

We are often exhausted and stressed. This is the one category that people apply. Always. Any justifiable complaint or concern we raise is immediately attributed to the stress we are under. Yes, we are under stress, but sometimes - just sometimes – there might be something more. Having someone decide that the stress of my “situation” is the only driving factor in my life disrespects me as a person as well as the hard work I do every day. That disrespect is difficult (or impossible) to tolerate.

This is an except of an excellent, provocative post written by Sally, the mother of Maggie at Maggie's World. As I traipsed around the city today, doing the balancing act of normal and not, her words rang true, strengthening me. Go HERE to read more (and leave a shout-out for Miss Maggie who will be undergoing a procedure, one of countless hospitalizations that she's had to endure).