Saturday, October 9, 2010

I'm back. Sort of.

I kind of lost my writing mojo over the summer.  Summer is, I am quickly learning, unstructured and a lot of work.  You don't have to have a "special needs" kid to feel exhausted by the perpetual Mommy Variety Show that seems to be the only program available between June and September.  Yeah...summer parenting is no joke.

We had a few adventures, which I will get around to writing about very soon.  One of this summer's  adventures involved an enormous, Hollywood-movie-star-size RV, and the other involved a favorite locale, where we surprisingly couldn't find tofu noodles.  Apparently, just because you have a mobile kitchen, doesn't mean you can weigh your meals while in transit.  Also, just because you can get the finest cuisine of New York and LA in the mountains, doesn't mean you can find unrefined coconut oil at the local supermarkets.  All this sounds like common sense.  Now.

We will, in the next post, discuss Traveling With The Diet.  In the last two years, we have taken the diet on the road a lot.  We have been fearless, taking long flights, multiple connections, going to small islands, international cities and places you'd think there would be a Whole Foods (but there isn't).  And, on more than a few occasions, we have really f*cked up.  Again, I'll get to that in upcoming posts.  Sometimes, I think it's a miracle both my children are alive and well.  I can be so dumb.

In any case, the Epilepsy Foundation of Greater Los Angeles is holding its annual Epilepsy Freedom Walk, on Sunday, October 17th.  If you live in LA, please join us.  It will be a fun day of activities from 11-3, with great resources, cool food trucks, and a fantastic group of people.  It is undeniably a fundraiser, so if you can, please help support the EFGLA and people with epilepsy by donating here: http://EpilepsyFreedomWalk2010.kintera.org/sebastianbaum

Just so you know, the EFGLA is not an indiscriminate Horrible Disease Charity.  It's our local Los Angeles affiliate.  Steven is on the Board.  The EFGLA very tangibly touches our lives.

They help fund fellowships for epileptologists at our local hospitals--fellows that actually see Sebastian.  The EFGLA supports the Diet Therapy Program at UCLA.  Without their support, Sebastian might not have been able to stay on the diet; it takes a team of medical professionals to monitor the kids' progress.   The EFGLA (and the National EF) ran a dogged advocacy campaign to allow Diastat, the emergency protocol for those with seizure disorders, to be administered by non-medical professionals in schools.  [The issue is complicated with unions and such, but quite plainly: if, hypothetically, on Tuesdays and Thursdays, there is no school nurse at Sebastian's public school, and therefore, no one to administer Diastat to Sebastian should he start to seize uncontrollably, then, on Tuesdays and Thursdays, Sebastian can't go to school.  That's monumentally unfair, wouldn't you say?]

You get the idea.  We believe in this organization.  They do real stuff.  So if you can, please help.  We are walking as Team Sebastian and you can find a link to our fundraising efforts here: http://EpilepsyFreedomWalk2010.kintera.org/sebastianbaum (I know it's the second link in the same post, but I'm really trying, folks. I didn't claim to be good at it).


Finally, in case I haven't thanked you for reading my blog yet, now is my moment.  Thanks so much for your interest and your support.  It means everything to me.  I'm glad to be back.