When Giving is All We Have

I've been in a self-absorbed rut.

Today is Giving Tuesday.

I'm no philanthropist and have difficulty with the philanthropy model, so much so that I've long given up fund-raising for medical charities, etc.  But today, on Giving Tuesday, I'm pulling my head out of my navel and raising money for a non-profit foundation that is particularly dear to my heart. It's the place where Sophie goes each day that she is able, a community of disabled young people and their aides or "coaches," who help them to access the community, to work, to be a part of something bigger than themselves and their diagnoses. The staff of Creative Steps/Aurelia Foundation expands these young people's lives and sees beyond their limitations, and it's a beautiful thing. They run on a shoestring budget, partially reimbursed by the State of California, but I learned yesterday that they also run on a consistent $350 a month per client deficit. I'm reaching out to you today to donate whatever you can to The Aurelia Foundation -- even a tiny amount is a good thing!

Here's Sophie's and my page:

Aurelia Foundation/Creative Steps





Here's a poem:

When Giving Is All We Have

       One river gives
       Its journey to the next.

We give because someone gave to us.
We give because nobody gave to us.

We give because giving has changed us.
We give because giving could have changed us.

We have been better for it,
We have been wounded by it —

Giving has many faces: It is loud and quiet,
Big, though small, diamond in wood-nails.

Its story is old, the plot worn and the pages too,
But we read this book, anyway, over and again:

Giving is, first and every time, hand to hand,
Mine to yours, yours to mine.

You gave me blue and I gave you yellow.
Together we are simple green. You gave me

What you did not have, and I gave you
What I had to give — together, we made

Something greater from the difference. 

From “A Small Story about the Sky,” by Alberto Ríos (Copper Canyon Press, 2015). Reprinted with permission from Copper Canyon Press.

Team Sophie and the Walk to End Epilepsy!

The sky was a brilliant blue and the Pasadena sun relentless, but TEAM SOPHIE gathered at the BRAIN NOW bus at the Rose Bowl to walk together to help END EPILEPSY.

Here's our STAR: Gretchen  of Second Blooming who RAN a 5K for Team Sophie and raised more than $500! I adore her. Thank you, Gretchen!

Here's our INSPIRATION, Sophie in front of the Brain Bus. Those teams who raised the most money got their names on the bus. Thank you, everyone who donated!

Here's one of my best friends -- Cara -- who with her husband and girls triumphantly completed the 1K Stroll with us!

She has always been Sophie's and my biggest supporter, and I adore her, too.

Thank you, Cara!

Here's the whole TEAM SOPHIE -- friends, relatives and Sophie's caregiver, my friend Carmen with her entire family!Thank you to each of you. 

I'm not sure how much you realize what it meant to us to have you there, walking alongside Henry, Oliver, Michael, Sophie and me.

I just loved these ladies and their hilarious tee-shirts. As you all know, it's incredibly difficult to

keep calm during a seizure, and those of us in the trenches, dealing with it daily just want epilepsy to END.

 See you next year! 

If you missed donating, you still can! Visit Team Sophie on the End Epilepsy Walk page here.

Bumper Sticker Thoughts

See you tomorrow at the Epilepsy Foundation of Greater Los Angeles' END EPILEPSY walk. We're meeting all members of Team Sophie at the giant brain by the Epilepsy Brain Bus.

Thank you for all your donations and your support. If you haven't had time to donate, that's all right because there's still time. Just click here and join us as we indefatigably work for relief from this devastating disease.

As for the MAKE DINNER NOT WAR bumper sticker, I had the pleasure of meeting Jenny Rosenstrach, the author of the wonderful cookbook Dinner: A Love Story and blog of the same name.  She was at Chevalier's, my favorite independent bookstore in Los Angeles, signing her books. We chatted for quite a bit, and I can honestly say that I feel like I've known her forever! If you don't know her blog or haven't gotten her book, I highly recommend its incredibly family-friendly recipes. Jenny and her husband write beautifully and with much banter and wit about their life with their children. I have used the recipes on her blog and in her book over and over and can attest for their ease and deliciousness!

Throwing something out to the universe,

and hoping that it'll be thrown back --

How cool is this bike? It's called The Duet, and word is that it's wonderful but not affordable, like so much of the stuff in the world of disability. Other than prostitution, any ideas for fund-raising? Any billionaires out there who want a tax write-off? Any moochers or receivers of government services that don't really need them but think the government is responsible for paying for everything want to do penance?

September is the Month for GOLD

Did you know that September is Childhood Cancer Awareness Month?

I didn't but learned that it was on my dear friend Karen Gerstenberger's blog last night. I've written about Karen on this blog several times, helping her to promote her extraordinary book about her daughter Katie's struggle with and eventual death at age twelve from a hideous cancer that killed her in nine months. Katie happens to have been born on the exact same day and year as my Sophie, and there isn't a birthday that has passed for Sophie in the last five years, since I started reading Karen's blog, that I haven't thought of Katie, her short life and her beautiful parents and brother.

I also wrote here of Gus, a young boy in my neighborhood and friend of my son Oliver, who died this summer at the age of ten after a second battle with cancer. I haven't ever written of my childhood friend Annie who died when she was fourteen years old of leukemia, leaving her parents bereft of their only child. Despite the many, many years that have passed since her death, I can see her face clearly in my mind's eye, her sweet, gentle eyes and smile.

Karen makes an impassioned plea to be aware that childhood cancer is the number one leading cause of death in children. She describes the amazing efforts of The Ben Towne Childhood Cancer Research foundation in Seattle to cure cancer through immunotherapy, a novel approach that seeks to cure and treat without poison and the risk of permanent disability that current treatments carry.

Please click over to her blog and read more. Buy her book, a wonderful and informative read about "the way it really is in pediatric cancer." Wear a gold ribbon. Donate some money. Inform yourself. Don't be cynical and think your efforts will be for naught.

Honor Katie, Gus and Annie, all those children who you know and don't know who have died or suffer from this terrible disease.

Team Sophie the Mermaid and the Epilepsy Run/Walk

After a year-long sabbatical where I wanted nothing to do with epilepsy and raising money to end epilepsy, I pulled myself up by my bootstraps (Republicans, love me!) and signed up to be Team Captain for this year's End Epilepsy Walk/Run. I'm forming my team now -- and some of you have already gotten notified and have generously donated -- but I'll provide links to it at a later date.

Today, I want to highlight one of my dearest blogger friends, artist Kim from Art in Red Wagons and Words On Paper Scraps. Kim has graciously created a special section in her etsy shop called Team Sophie and is donating a portion of her proceeds to our cause!

If you haven't visited Kim before and want to see some extraordinary drawing, painting and crafting, as well as beautiful writing and over-the-top gorgeous photography of the Pacific Northwest, you need to hop on over there. If you're so inclined, purchase one of those darling shells with the mermaids, keep it in your purse or pocket and help Sophie and all those like her.

Here's the link to the shop:  Etsy Team Sophie
Here's the link to join our team and/or make a donation:

The Helper Syndrome

I posted a few light words about working for non-profit foundations over at Mama Manifesto and then weirdly  read these words this morning by Ezra Bayda:

Often our efforts, even for a good cause, are made in the service of our desires for comfort, security,and appreciation. Such efforts are still self-centered because we’re trying to make life conform to our picture of how it ought to be. It’s only by seeing through this self—the self that creates and sustains our repeating patterns—that we can move toward a more life-centered way of living.


You can read the light stuff HERE.


You can read Ezra Bayda HERE.


I'd love to start a discussion about non-profit organizations, the mechanics and need or otherwise of fundraising, what your experiences and thoughts are.