Last Day in D.C.

Sunday was our final day in D.C.  I know that I would have loved to stay even longer except for two things:  my right foot and my left foot! 

If only I had found the wonderful blister band-aids sooner!  They were heavenly.  With the help of my new foot remedies we headed off for our last adventure.  Food from the cafe at the Smithsonian's Museum of American History.  We just had to have what we thought was called Rum Bums one last time (of course when we got there we found out it was Rum Buns and we read the label wrong...the reason "Rum Bums" tasted so much like cheesecake was because it was cheesecake!). 

After eating and a getting a few last souvenirs to bring home from the museum we headed off to the one place I thought we absolutely had to see:  The White House!

We hadn't arranged ahead of time for a tour, but we at least needed to get a glimpse of it.  We got as close as we could in our short amount of time and worn out feet.  We knew we had to be in the right spot because we found a "sign."

Not pretty, but at least we knew we found the right big white house!  No glimpses of the Prez, but we still got a few good pictures.

And that was it!  Our final moments in D.C.  After we made our way back to the hotel, gathered up our belongings (should have brought one more suitcase for the stuff we'd haul back home), and made our way to the airport.  We had the time of our lives.  This was a trip I had wanted to make with Brennan for several years...long before he would have even been eligible to attend something like Kids Speak Up! for kids with epilepsy.  I know how lucky we were to be given this opportunity and we enjoyed every minute of it! 

We'd like to thank a few people for this wonderful week:

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  Alan, Sophie, & Abigail Bayless Feldman for living without us for a week!
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  Carol Chamberlain and the Epilepsy Foundation of Arizona for choosing Brennan to represent Arizona at Kids Speak Up!
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  Kids Speak Up! and the Epilepsy Foundation for having this amazing opportunity for kids to speak up!
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  Dr. David LaBiner (as well as Carol Chamberlain) for being our partners in crime at the Capital Hill visits & also for arranging for Brennan to get to meet Greg Grunberg.
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  Jessi Frend from Steptoe & Johnson for helping us schedule our meetings on Capital Hill (we broke the record for Hill visits with Kids Speak Up!).
• 
  
  Greg Grunberg & Family for being so nice to us. 
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  To the offices of Congressman John Shaddegg, Congresswoman Ann Kirkpatrick, Congressman Ed Pastor, Congressman Harry Mitchell, Congressman Raul Grijlava, Congresswoman Gabrielle Giffords, Congressman Jeff Flake, Senator John McCain, and Senator Joh Kyl.
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  Special thanks also to Congressman John Shaddegg and Congressman Raul Grijalva who met with Brennan personally.
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  Faith North Montessori & Mrs. Sotelo who let this week count as a really cool field trip. 
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  Rabbi Barb who let Brennan take a short break from Bar Mitzvah studying.
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  And all the other families we met who participated in Kids Speak Up!

More Fun On Saturday

After the National Walk for Epilepsy we just kept walking.  Why stop, right?  And since we were pretty close to the one place Brennan wanted to make sure we went to:  The Smithsonian's Air & Space Museum. 

We spent our last full day in D.C. going to Air & Space Museum, The Holocaust Memorial Museum, The Lincoln Memorial, and the Vietnam Veterans Memorial Wall.

Brennan at Air & Space

Brennan at Air & Space

Brennan at Air & Space

Karen & Brennan, Karen & Brennan, Karen & Brennan,

Karen & Brennan, Karen & Brennan, Karen & Brennan

Waiting for 3D IMAX Movie at Air & Space

Brennan & Karen at Lincoln Memorial

Brennan at Vietnam Veterans Memorial Wall

Friday--Free Day? Yeah, Right!

Friday was going to be our free day for sight-seeing and hanging out.  Our only obligation was going to be meeting up with my cousin Greg who lives in D.C.  What is the saying about the best laid plans?  Well, anyway...we ended up with tickets to go into the Gallery for the U.S. House and Senate (thanks to Robin Wright from Senator Jon Kyl's office).  And we were also told we'd be put on a guest list for a special reception for the National Walk for Epilepsy (thanks to Dr. David LaBiner who attended the Capital Hill meetings with us).  And luckily Greg could meet us for a late dinner because the reception was from 6-8pm. 

And maybe all those plans don't seem like a lot, but considering how tired we were from our amazing and exhausting day on Capital Hill...we didn't get out the door in the "morning" until after 11am.  We read about all the restrictions if we were going to visit the House and Senate Galleries, so we left nearly everything back at the hotel.  You will just have to believe me that we sat there in the two Galleries, because we weren't even allowed to take our phones in and snap a low-quality camera phone picture to prove we were there.  

We went into the House of Representatives Viewing Gallery first.  The most exciting thing going on was some one who looked rather young was reading a newspaper.  I still enjoyed my time taking in all of the history of the room we were in.  In fact just the day before was the final voting on the momentous Health Care Reform Bill.

Viewing the Senate was slightly busier.  We watched as one or two Senators hung out and one at a time made a fairly unimportant speech to very few interested people.  It was still interesting to listen and look around.  

After we left the Capital for the last time of this visit to D.C. we went over to the Holocaust Memorial Museum.  We only saw the exhibitions that didn't require a ticket (you have to show up earlier in the day to get a pass to come back later in the day to see most of the exhibits).  I really wanted Brennan to understand the depth of what happened during the Holocaust.  We decided we'd come back Saturday to try to get tickets to see more. 

We headed back to the hotel to get ready for the reception for the National Walk for Epilepsy.  Here's why  we were invited:  Brennan really loves the show Heroes.  And one of the stars of Heroes, Greg Grunberg, was the chair of the Walk was going to be speaking at this reception.  We'd heard Greg speak briefly on Thursday during a Capital Briefing, but we had to leave before he was done talking in order to hoof it to Senator McCain's office.  And David LaBiner, the guy who went with us to our Hill visits, felt bad for the poor kid who came all this way and did all this work and should get the joy of meeting an actor from his favorite TV show.  Dr. LaBiner wanted to make sure that Brennan would get to meet Greg Grunberg.  Wasn't that sweet?

We took our first cab ride of the trip to the reception.  It was fun watching Brennan "hail" us a cab from in front of our hotel.  Other people at the reception were some NFL players who also have epilepsy, and Miss District of Columbia (I was in awe of her because she gets to wear a crown every day!).  Just before Greg Grunberg showed up we saw his son, Jake, who has epilepsy.  It was not hard to miss Jake because he had a cast on his foot (one thing Greg mentioned at the Hill Briefing was being excited that the injury was not epilepsy related).  Brennan spoke to Jake a bit.  They have a few things in common.  Epilepsy.  Brennan is 12 and Jake is 13.  Both have had brain surgery.  Brennan and Jake were comparing scars when Greg showed up.  I have one picture of Brennan with Greg Grunberg and it's blurry!

Aside from being star struck all night long, I really enjoyed talking to Greg Grunberg's wife and mother-in-law.  Elizabeth Grunberg was so nice to talk to about parenting a child with epilepsy, and her mother and I discussed everything from epilepsy to bar mitzvahs...and she gave me a hug before I left.  Such nice people.  And I haven't even mentioned the great website that Greg Grunberg has about epilepsy.  Everyone should see it, but especially kids.  It has great information that is easy to understand.  Go to http://www.talkaboutit.org/ and make sure to watch the section about First Aid--it's very easy to remember stuff.  

We also met Debra Josephs with the Anita Kaufmann Foundation and also an supporter of  Purple Day.  Debra is a bundle of energy and enthusiasm for education the entire world about epilepsy.  And I hope she does.  The more people who know about seizures and seizure safety, the better I will feel about sending my son out in the world.  

Friday had a great ending as well.  We met with my cousin, Greg Chavez, who lives in D.C.  He picked a great place to eat dinner, Georgia Brown's.  I don't get to see Greg often, but whenever I do I enjoy our time together.  And it was funny to find out that he works so close to the really cool blue things that play music when you touch them.  We ran around them the night before trying to touch as many as we could to get them all to make sounds.

After dinner it was time to pretend we'd get a little rest before the BIG 2010 National Walk for Epilepsy. 

If you think this blog post is long, you should have been with us for the day!  Exhausting, but wonderful.

Thanks so much to Dr. David LaBiner for making it possible for Brennan to meet one of his "Heroes" and to Greg and Elizabeth Grunberg and of course Jake Grunberg for being so nice to us, and to our own Greg, Greg Chavez, for waiting to eat dinner with us and taking us for some great Low Country Cuisine!

D.C. Day 2

Let me start by saying that jet lag is funny.  It makes you feel like you could wake up so early because there's this three hour time difference, so waking up at 5 am to go spend some quality time with a treadmill is really like sleeping in.  But then when the #%&@ alarm clocks start going off you are pretty sure you've only been asleep for 30 minutes. 

Then you really wake up.  And you go to the window.  And if you've never been to Washington D.C. or you've only been once and it was over 15 years ago, you might really appreciate the view. 

Day 2 of our trip was a long day.  Breakfast started at 8am.  Dinner was over at 8pm.  There were a few breaks during the day, but we only got one chance to step outside.  It was a busy day because it was an important day.  We learned a lot about what program participants are expected to do in the next year.  One thing the kids are expected to do is educate others about epilepsy.  We discussed ways to do that. 

Here's Brennan giving his idea:

We also heard speakers talk about all of the research that is being done so that we could explain the importance of government funding.  All I can say is a) I had no idea of the amazing research that is being done (there's this disolving material that can be placed on the brain to "map" the location of a seizure's onset...it helps surgeons know with more certainty the areas that may need to be removed to eliminate some seizures!) and b) I have so much gratitude for the people who are working daily to come up with ways to help my child and others like him. 

The kids had their own programs to go to today.  They got to meet a football and basketball player who both have epilepsy.  They practiced talking about their experiences with having seizures.  They ate better food (probably). 

It was a long day.  Tomorrow is another long day.  Tomorrow we go to Capital Hill.  I should be sleeping and I'm too excited.  We have nine visits scheduled--mostly with the aids of Senators and Representatives.  We will be busy.  I better start counting some sheep.

I can't wait to hear Brennan tell his story. 

Brennan Speaks Up!

For a couple of years now I have had epilepsy. For awhile I have been going to the epilepsy walks, and Camp Candlelight. But this year I am trying to do a little more. So this year I was exited to find out that I received a grant to go to Washington D.C and explain to legislators about what it’s like to be a kid with epilepsy. When I go to D.C. to participate in Kids Speak Up! I will be meeting kids from all across the country with epilepsy. We are all there to talk about our stories so that the big wigs will hopefully help when it comes time to vote for funding or make laws to help people with epilepsy.


I’m also exited to go to D.C. I have never been so this would be my first time there. I hope I can visit the Smithsonian. I also want to see the presidential national monuments. I also can’t wait to be spending quality time with my mom (my mom made me type the last one).

Give Until It Feels Good

Do not give until it hurts.  Give until you feel good.  But give.  Brennan is 12, so give 12 bucks.  Or give your age.  Or give 18 smackeroos because in the Jewish number 18 stands for life.  Or give 18 X whatever.

Now that you have decided that it would feel good to give you have some choices to make. National Epilepsy Foundation?  Epilepsy Foundation of Arizona?  Both?  Donate?  Walk?  Virtually walk? 

If you need help deciding here is some basic info and links:

National Walk for Epilepsy. March 27, 2010. I don't think there is a minimum amount to donate, but joining the team as a virtual walker is $20 for kids and $25 for adults. The money for the national walk goes to research, education, and helping fund things like the Kids Speak Up! program that is sending Brennan to DC next week. We don't have a fundraising goal, but would love to see a large team of "walkers" supporting Team Brennan.


Epilepsy Foundation of Arizona Walk. April 10, 2010.  There is no minimum amount to join the walking team or just to donate. In fact I haven't even put Brennan down for a donation yet.  Our fundraising goal is for our team to raise $1400 because that is the total cost of sending 1 child to Camp Candlelight.  The money donated stays in Arizona.   

We would  like to help both organizations like they have both helped our family.  But the choice is yours to donate, walk, or virtually walk.  National or Arizona.  Just make the decision to give until it feels good!