The San Francisco Hard Hat Walk and Riding Planes with Valkyries

Oliver and I had a wonderful weekend up north. We had a good visit with my sweet Aunt Yvonne who is eighty five years old and very frail but still sharp as a tack. We also drove up to San Francisco to participate in the Children's Hospital Hard Hat Walk. We were proud members of Team Maggie, walking in her memory alongside many of Sally's friends and family. The energy there was lovely -- there was music and delicious food from local restaurants, and the hospital looks like it will be an amazing center of health and healing. The only thing missing, of course, was darling Maggie, but I imagine her spirit infused everything and everyone. It was a beautiful evening in San Francisco and an impressive event. I confess to not realizing that it was a real walk, like a miles and miles walk, and only wore a trusty pair of Birkenstock sandals, but my feet are still attached to my body twenty-four hours later, and I'm pretty excited that I finally got a decent amount of exercise after languishing for weeks with that dadgum virus.

Here's Sally and me:

Here's the Big O and me:

Not a bad view to walk along and gaze upon --

Oliver and I flew back on a Southwest Air flight from San Jose to Los Angeles this afternoon with the entire UCLA women's volleyball team. I don't think I've ever seen a powerhouse college volleyball team, and ya'll -- these women were like Valkyries. The tallest ones, and there were a bunch of tallest ones, were well over six feet and many had waist-length yellow blonde hair. The team was pretty diverse in every way except for height, and I have to say that it was hard not to stare at them walking as a group -- they honestly looked like they'd stepped out of some kind of mythical adventure book. These photos really don't do it justice, but I wonder where they all come from if not the realm of the gods.

How was your weekend?

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!

Not much to say

I just typed out there's not much to say in answer to a friend's anguished question to me regarding the death of dear Maggie this past weekend. And that's the damn truth. I think about Maggie and my friend Sally, her mother, nearly every moment. I opened my eyes this morning and wondered how Sally was opening hers. I think about my Sophie and her own fragility. I think about the fact that she's going weeks without seizures for the first time in her life and what that would mean if she were to suddenly die. I think about Oliver's cry, not too long ago, what is it all for? I think about the Buddhist tenets of suffering, of clinging and not-clinging. I think of the men and women of Wall Street, those that I read of today, the several that I actually know, their secret society where they dress up, act out, mock those that have less, exalt their own goddamned positions. What is there to say about that? I think of the pink Japanese magnolia petals against the blue sky and how the pink curls at the ends into white then brown then falls then rots. I crush it between my fingers, and it stinks, but only faintly. There's the memory of scent behind the decay. But there's not much, and I really don't know what to say.

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.

I've got the whole world in my hands

for Sara, Maggie and Sally

A couple of pieces of mail that were shoved through the door slot today looked as if they'd been chewed. I swear I saw teeth marks on the corners, and one was ripped.  Something had chewed off the corner of the confidential report of Sophie's conservatorship, submitted to the judge downtown. I sat on my bed and read the recommended seven powers that The Husband and I would "gain" upon the judge's decision later this month. Los Angeles is beautiful today, like most other days and despite yesterday's mayhem in Santa Monica, the sky is still blue and the bougainvillea riotously pink. The breezes are blowing even as sirens wail.  The Limited Conservatorship law recognizes the important principle that persons with developmental disabilities should not, on the basis of their disability alone, be deemed  unable to exercise certain rights, I read. The sky is still blue and the bougainvillea pink. It is not likely that she could respond appropriately to an emergency, such as an earthquake or a fire. Breezes blow and sirens wail.  I also received a copy of my poet friend Sara's new collection called Lake Effect, and opened to the world has broken blazing from a poem titled Tree of Heaven.  In another envelope was a gift for Sophie from Sally and Maggie of Maggie World, a beautiful necklace that spelled out DREAM. Again, given her significant deficits in communication, self-care and self-safety, the Regional Center recommends granting the power to consent or withhold consent to marry. If I were more beast than human, I'd chew the rest of it up, read only the poetry and swallow, a dream around my neck.

Some of you might find this tiresome, but please:

This says it all.

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!