June 23, 2009

California

I thought about doing a detailed wrap-up of the 2nd Annual Microcephaly Convention, which we attended over the weekend and where I presented a speech, but I think my previous post probably expressed how we felt pretty well. It really did feel like we were attending what was going to be, unbeknownst to us, a family reunion. It was a life-changing experience.

Outside of the conference, we had a good time as well, aside from my issues with our rental car at the very beginning of the trip. Now, in my own defense, the car rental lot was in a dark spot underground. Furthermore, the attendant simply led us to the car, a Nissan Altima, and aside from opening the trunk before I got there (another crucial point in my defense, since I couldn't see what was printed in large letters on the back), she didn't say a word about any special properties the car might have. And I'd never actually driven a keyless car before, but the instructions said plainly that in order to start the car, one should simply press the ignition button. Also, Julie was not one bit of help, at all.

Having presented all my weak arguments, however, it is still embarrassing to the point of tragedy how long we sat in this car, repeatedly pushing the button to seemingly turn on the dash lights and then turn them off again, hitting the gas but hearing nothing from the engine, before some random synaptic event occurred inside my brain that instructed me to put the car in drive so that we could drive away in our soundless Hybrid rental car.

Anyway, here are some photos from the weekend.




Schuyler and I signing books, which were purchased and then given out by the Prentke Romich Company, makers of the Big Box of Words and Pinkessa, and our very generous sponsors for this appearance.

Serious speech face


With Jenniffer Lewis, Founder, President and CEO of the Foundation for Children with Microcephaly. Schuyler loved Jenni immediately and with a tackle-hugging intensity that bordered on person injury. To her credit, Jenni loved her right back and was gracious and warm to our family, not once mentioning "Schuyler" and "restraining order" in the same sentence. Our daughter really can be a little stalker when she falls for someone.


Schuyler and Dr. William Dobyns, from the University of Chicago Department of Human Genetics. If you've read my book, you know that he is like the Wizard of Oz for parents of kids with genetic brain disorders; the importance and generosity of his presence at this conference can't be overstated. He commented on how well Schuyler's natural speech has progressed, which made me happy.

He was friendly enough to me and didn't mention the book, aside from a comment about how he's got PMG parents who now want speech devices for their kids that they can't afford and that the schools and insurance carriers won't pay for. Fair enough. I know my book has made things more complicated for doctors and teachers and school administrators. I'm not sorry about that, exactly, but I get it.


Demonstrating Pinkessa to author Vicki Forman and her daughter, Josie. Vicki's incredible book, This Lovely Life, is hitting bookstores soon and is already available for order. I am not exaggerating one bit when I say that it is the most astonishing and emotionally affecting book I've read in years, maybe ever. I'll have more to say about it soon, but you need to go buy it now. I mean it. I'll wait.


Schuyler and Josie, drawing together. Shortly after this, they ran into the ocean fully clothed and bodysurfed together. I'm not even kidding.


Schuyler apparently had some ideas about how Vicki should wear her hair.


Monique and Julie at the beach.


Probably self-explanatory.


Arriving back in Dallas with Jasper. He always brings her home.

13 comments:

Leightongirl said...

Beautiful. A great visit.

StaceyEsq said...

The shot of Schuyler in the surf just made my crazy, pathetic day.

Thanks for sharing!

Anonymous said...

What a wonderful trip! I'm a huge fan of Vicki Forman's as well and can't wait to read her book. I found her blog from yours and have been lapping up all the wonderful words that each of you write!

Laura

meanderings said...

I'm still chortling at "starting the car."
Loved all the photo smiles!

Christine G. said...

i love that schuyler's wearing the "we are not alone" t-shirt. looking at the photo full size on my monitor that is probably the most amazing and beautiful picture of her you've ever, ever taken.

Anonymous said...

Don't feel bad about the car, I've had a hybrid for 3+ years and still make that mistake. The other mistake I make frequently is forgetting to turn the car off before you get out of it.

Kate said...

For some reason I just love reading about Schuyler. I love her energy and joy and style. You're a wonderful father. Your words about her are always amazing.

Anonymous said...

As you ordered, I have Vicki Forman's book -- have
just read the first several chapters. Didn't want to
stop -- same as when I read your book -- but had
to go pick up my own child.

Karen Harrington said...

Great photos. Sounds like you and the fam had a wonderful time.

Niksmom said...

What a great visit that must have been. I especially love the shot w/Jasper! :-)

Tracey said...

Such fabulousness! I love love love the Schuyler/ocean pic.

Nightfall said...

The last two pictures are just the best ever.

Barbara from Boston said...

Schuyler is looking very grown up.