Thanksgiving #7

I'm thankful today for the Gift of Gab (and my women friends who possess it, too), because if I didn't have it I would surely go crazy.

Thank You, Scott and PACE!

This morning, at the crack of dawn, my dear friend Susan's husband will be running in the New York City Marathon. Scott and Susan continue to serve as board members of PACE -- People Against Childhood Epilepsy -- the non-profit foundation that we founded many, many years ago, along with two other parents of children with severe seizure disorders. Our passion for finding help for children with epilepsy and our friendship has persisted for many years, despite all the literal miles between us, and while I am no longer on the board of PACE, I am proud to be an advisor and supporter of all of its efforts.

Scott is running tomorrow to raise money for PACE -- this organization works, literally, on the cutting edge, raising millions of dollars for medical research and outreach benefiting children with epilepsy and their families. With the exception of one or two employees, the organization has been and continues to be run completely by volunteers and the tenacious directors, a rare thing in the non-profit world. Nearly ALL money raised goes directly to PACE projects.

The inspiration for Scott's running and, originally, for PACE? That would be his daughter Morgan, my Sophie's first friend and seizure comrade:

Morgan, her mother Susan, Sophie and I spent many, many days and weeks together, living in a motel in La Jolla while we sought help from a renowned osteopath. Despite vast differences in personality, Susan and I shared the same raucous and often bitter sense of humor that sustained us in some of our darkest days. Susan was one of the first mothers I met who seemed almost impossibly brave and strong, and even now in some of my most sorrowful moments I know that I can trust her with them -- trust in her to understand, to cry with me, to make me laugh. And while it's hard to believe that our babies are nearing age sixteen (how in the hell did we get this far?), still plagued by seizures with little to no respite, we are blessed in family and friendship and bonded together tightly in common experience.

Please cheer Scott on if you live in New York City and happen to be watching. Visit the PACE website to learn more about epilepsy and PACE's work. Sign up for the listserv if you need support from other parents of children with epilepsy and donate if you can.

Go, Scott, Go!

Valentine

Have you ever met Valentine, our Standard Poodle? We bought her seven years ago or so, and like a crazy idiot, I was supposed to train her to be a therapy dog for Sophie. I drove to San Diego (two hours away) every other weekend for a one-day training class. I did that for about six months, and then I couldn't do it anymore. Valentine became a family dog. She is impossibly people-oriented and lives to be loved. She does 360s when we walk in the front door and hasn't calmed down one bit over the years. She's "of average intelligence" for her breed, according to the trainer we took her to for behavior some years ago, which was really just a nice way to say that she's not "that bright." Poodles are supposed to be one of the smartest breeds of dogs out there, but she's more human-like than intelligent, I think. Oliver adores her, in particular and has no problem giving her kisses on her mouth. I love her for her simplicity but  her clicking toenails on the hardwood floor drive me nuts. I think she's really cute, but I also think she's a pain in the ass.

Thanksgiving #6**

How did the rose ever open its heart and give to this world all of its beauty? It felt the encouragement of Light against its being; otherwise we all remain too frightened.

Hafiz

I am thankful today for roses blooming in my backyard in November.

**I am making thanks each day of this month of Thanksgiving.

Thanksgiving #5

I'm thankful for my sons, Henry and Oliver. They keep me going, the road endless, paved with love.

To all the haters and lovers

The wisest words I've read all week, the words that float around my own brain and find no form as beautiful as this:

The people who have made the greatest contributions to change for the better do not live to see the full manifestation of those changes, but they do it anyway. Because they care, because they are far thinkers, because they passionately believe in what is right. Even when great and fast changes have been made it takes a very long time for us to sink into them and feel them. President Lincoln didn't just say, "I'm going to kick it up a notch. BAM! I freed the slaves!" and then everything was equal. It took people time and time again to fight and pray and speak and march and die and new people to be born in a different world to make an even more different world and still it is not perfect. That change is still happening.
I voted for my President because he spoke of change, but also because he is smart. I voted for him because he loves his family so clearly, and therefore I know he is capable of love. I voted for him because he speaks of health before he speaks of wealth and because he stands tall and is proud in his body, as I hope he is proud of our nation. Because I am not a foot or a hand, but I am my whole body. And I am not one person, I am a family, I am a city, I am a nation.
It took us a very long time to get sick, and it may take us a very long time to get well, and I am sure as hell not going to damn the man who I believe is going to fight with all he's got to make us better. No matter how long it takes.


May at all writey then.

Mi She Berach

I learned this Jewish prayer and listened to this song, today, from fellow bloggers Single Dad and Claire. 

I offer it to my Sophie, for my Sophie, for Single Dad's father and for Claire and her Sophie.



Mi she berach avoteinu,
M'kor hab'racha l'imoteinu

May the source of strength, Who blessed the ones before us
Help us find the courage to make our lives a blessing
And let us say: Amen.

Mi she berach imoteinu,
M'kor hab'racha l'avoteinu
r'fuah sh'leima

Bless those in need of healing with r'fuah sh'leima
The renewal of body, the renewal of spirit,
And let us say: Amen.

Giving Thanks

I read over at Maggie's World that Maggie's mother is going to list one thing each day that she's thankful for during the month of November. I think that's a great idea, and I'm going to do so as well.

Here's to thanksgiving -- for the entire month! And since I missed the first three days, I'll back up:

November 1st:  I'm thankful that my children have a day off from school so that we could all just lay around in our pajamas and digest the candy we ate the night before.

November 2nd: I'm thankful that despite Sophie having a terrible day, I am able to stay at home with her and take care of her.

November 3rd: I'm thankful that I received the wonderful fellowship through USC and Children's Hospital and am meeting so many new people who devote their lives to helping children with special healthcare needs.

November 4th: I'm thankful that it's November in Los Angeles and spectacularly sunny and warm.

I love Margaret and Helen

Oh, happy day!

Yes, I do.

And I wonder what sort of trolls bugged them after this post.

While eating bonbons, contemplating political balance and comments by Alethia,

I thought I might respond to her latest comment on my blog. Contrary to what some might think about me, I do have a life outside of refractory epilepsy and all the doom and gloom that goes with that (and hope and despair and acceptance and anger and joy and grief), so today after attending my leadership seminar and reading Alethia's comment, I felt like writing a post that's completely different. Those of you more decorous than I, those of you who prefer to avoid conflict and those of you who just don't want to see the perhaps coarser side of me, might want to stop reading now. Otherwise, after spending more than five hours learning about children with cerebral palsy and how we might help them to receive proper healthcare, I'm in need of diversion so I'm going to give Alethia's comment its 15 minutes of fame on my little old blog.

Let's go (Alethia's words are italicized. Mine are written in PURPLE). You can also read Alethia's comment HERE.


Hi again -- sorry I was too busy working for a Republican majority in the house to visit your lovely site.


Alethia, even my own Republican and very conservative dear and much-loved mother never gloats and taught me never to do so as well.


So your answer to the hard facts in the movie is to suggest that our diverse nation be more like Finland?


Alethia, I was referring to the argument presented by Diane Ravitch in the article/review of the film that really shook up my initial perception of the film. In the article, Ravitch calls Guggenheim, the film-maker, on his referring to Finland as a bastion of education success without also recognizing that Finland is a socialist country with a strong teachers' union. Did you read the article? Have you seen the film? For that matter, did you even read my post? Because neither the article, the film nor I advocate that we "become like Finland."


OK - we first need to get rid of about $295,000,000 people, impose a state religion, and make sure the group is ethnically homogeneous and wallah a perfect system. Such intellectual absurdity. At least your heart is in the right place.


Alethia, there have been at least three occasions now on which you've called into question my intellectual rigor or lack thereof. With all due respect, I believe I'm about as smart as the average person and perhaps a tad smarter, due to a great education, the hard work, love and support of my parents and a fairly flexible mind given to me by grace. As for my heart -- well -- does it make you feel better to throw in a personal compliment with your personal insults? And by the way, the word wallah that you have used is not a word generally used. I believe you meant voila -- the French word for see there. According to online dictionaries, your "wallah" is, among other definitions, an Arabic expression used to make a promise or express great credibility on an expression. It is considered a sin among Muslim to use this phrase and follow it up with a lie. 


Irony
Intellectual Absurdity
VOILA!!!


Thanks for the post prompt, Alethia.

Post Election Emily

When I feel slightly depressed about the State of Things (right now***) or even overwhelmingly so (not now), I want to run to the hills with some poetry.

Here you go.

A Day! Help! Help! Another Day!
Your prayers, oh Passer by!
From such a common ball as this
Might date a Victory!
From marshallings as simple
The flags of nations swang.
Steady -- my soul: What issues
Upon thine arrow hang!


c. 1858
Emily Dickinson




*** John Boehner. Really? I'm grateful to be living in California, though.

I'm Dreaming of

an iPad. Evidently, there are several new aps (did I spell that right?) for children and adults with special needs -- aps that might potentially help Sophie to communicate. Augmentative communication devices have long been a part of Sophie's life, but they are enormously expensive (way more than the iPad) and we've never really been able to use them consistently. I've just entered a giveaway for the iPad, though, and I'm keeping my fingers crossed.

But first, I'm dreaming that this little girl - Marissa - of Marissa's Bunny gets a chance at a better life.

Isn't she gorgeous? Marissa has infantile spasms, a brutal and particularly devastating seizure syndrome, the same type epilepsy that my Sophie was diagnosed with over fifteen years ago. Unlike Sophie, though, sweet Marissa has a chance at seizure relief through a new type of surgery. Along with the Ipad giveaway contest, there's a way to donate money toward all the unpaid expenses of this surgery.

Go visit, enter the contest, donate if you can and most of all send good wishes to Marissa and her family!

Go visit Marissa HERE.

Oliver in Sunday Sunlight

Remember, Really Remember