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:

• 
  
  Alan, Sophie, & Abigail Bayless Feldman for living without us for a week!
• 
  
  Carol Chamberlain and the Epilepsy Foundation of Arizona for choosing Brennan to represent Arizona at Kids Speak Up!
• 
  
  Kids Speak Up! and the Epilepsy Foundation for having this amazing opportunity for kids to speak up!
• 
  
  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.
• 
  
  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. 
• 
  
  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.
• 
  
  Special thanks also to Congressman John Shaddegg and Congressman Raul Grijalva who met with Brennan personally.
• 
  
  Faith North Montessori & Mrs. Sotelo who let this week count as a really cool field trip. 
• 
  
  Rabbi Barb who let Brennan take a short break from Bar Mitzvah studying.
• 
  
  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

Saturday & The Big Walk

Barely got to bed and WHAMM-O!  Time to wake up and get those walking shoes on! 

Saturday morning Brennan and I got down to the National Mall bright and EARLY.  Sure, we'd been in D.C. for a few days now, but 7:30 in the morning was still our 4:30 AM back in Phoenix.  (Oh, and by the way...the "National Mall" is not a shopping center!) 

Brennan pre-Walk

Brennan & Karen pre-Walk

(hanging with some of our best fake friends)

Joyce Bender with Brennan pre-Walk

Brennan really wanted to walk with Greg Grundberg and his son Jake, and we got there early enough to start the walk at the same time as the Grunberg Family.  Jake ended up walking some but mostly riding a golf cart because of his broken leg.  Brennan still got to walk with the Grunberg Family for part of the National Walk for Epilepsy.  Brennan and all of the others with a diagnosis of epilepsy got to wear a purple shirt and it was nice to see so many of the people that we were walking for...because you know that most people with epilepsy look just like everyone else.

Before and after the walk we got to talk to Joyce Bender.  Joyce spoke to the Kids Speak Up! crowd several times during our training days.  Joyce has epilepsy herself.  She also is the President/CEO of Bender Consulting which helps people with disabilities and employers.  She also is the Chair of the Board of Directors for the National Epilepsy Foundation.  And she's just a very positive person who constantly reminded the Kids Speak Up! participants to remember to do three things:  believe in yourself, make friends, and speak out! 


   

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!

What? More Walking?!?!

Our feet are still aching from yesterday.  We plan on doing some more walking today.  And tomorrow is the actual National Walk For Epilepsy!

It is not too late to show your support for Brennan and for the Epilepsy Foundation.  And I now know what the current programs are that the Epilepsy Foundation funds.  The current research being worked on to help with epilepsy treatment and some day a cure is fascinating.

We would love to see more people on Team Brennan.  And you don't have to travel to D.C. or even wear out your sneakers.  You can join as a Virtual Walker.  

Click HERE to support or join Team Brennan!

*A*M*A*Z*I*N*G* Day!

Here's what our scheduled looked like:

8AM        Breakfast

9:30AM   Meeting with staff of Congressman John Shadegg's office

10AM      Meeting with staff of Congressman Jeff Flake's office

11AM      Meeting with staff of Congresswoman Gabrielle Gifford's office

Lunch

1PM        Meeting with staff of of Congressman Raul Grijalva's office

1:30PM   Meeting with staff of Harry Mitchell's office

2PM        Meeting with staff of Congresswoman Ann Kirkpatrick's office

2:30PM   Meeting with staff of Congressman Ed Pastor's office

3PM        Kids Speak Up! Hill Briefing

4PM        Meeting with staff of Senator John McCain's office

4:30PM   Meeting with staff of Jon Kyl's office

5PM       Rip off shoes, weep a little while putting comfy shoes on for walk and Metro ride back to the hotel!

We knew ahead of time that we wouldn't be meeting with any actual elected officials, but were also told by people in the know that meeting with staffers could be better.  The first appointment we went to we stepped into the office and out of one door pops a Congressman!  It shocked us a little, but we got a few minutes of time with Rep. John Shadegg, who happens to be our district representative. 

Brennan's job was look handsome (which he did!), tell his story of living with epilepsy (he talked about how it all started and made sure to mention the seizure he had at school and how that felt), and not fall asleep during any boring parts (which got harder by our 8th and 9th appointments).  Brennan started the day very nervous and sometimes needing to read from notes he had about how his seizures started (not surprising because he doesn't remember what happens during his seizures).  Brennan spoke from the heart and most of the staffers were very interested in listening to him speak.  Many staffers, security guards, strangers passing in the halls also were interested in his attire.  He may have been the most sharp dressed individual on Capital Hill yesterday (was nearly a tie with the kid who had on the most vibrant blue shoes). 

One other visit where we bumped into an actual member of Congress was in Congressman Raul Grijalva's office.  He was on his way out, but once he saw us...well, Brennan, he came over and chatted a bit, took a few pictures (his staff tried really hard to get him to smile), and then brought Brennan out something to take with him.  We didn't look until after we left, but it was an invitation and ceremony program for President Obama's Inauguration.  Sure, it's too late now to go to that party, but what a great piece of history it is!

Carol Chamberlain, Karen, Brennan, Rep. Grijalva, Dr. David LaBiner

(This was the picture when one of the staff said, "Smile, Boss!")

The only real disappointment was the meeting at Congressman Ed Pastor's office.  Congressman Pastor had grandchildren that went to school with Brennan and his granddaughter was in kindergarten with Brennan.  Whenever Congressman Pastor was in town he'd pick the kids up from school.  He was there several times when Brennan was in the hospital and he was so nice.  Even asking us to let him know if there was anything he could do.  When we made the appointment with Congressman Pastor's office they knew that we really were hoping to see him, and they tried very hard to make that happen.  There was always the chance that he would pop in, but alas it wasn't meant to be...this time! 

                                                  

At 3PM we stopped in for a bit to see a Hill Briefing put on by the Kids Speak Up! people for staff and members of Congress.  The briefing included a talk by Greg Grunberg (actor from the TV show Heroes) who has a son with epilepsy.  Brennan is a big fan of the show Heroes, so it was cool to hear him talk about his son.  Greg started a website to talk more about epilepsy (has great information for anyone wanting to know more about epilepsy including first aid):  http://www.talkaboutit.org/. 

                                      

After the briefing we still had two more visits in the Senate buildings.  To get there you go into the basement and there are these underground trams that take you over.  Our first senate appointment was with staff for Senator John McCain.  We had a few minutes to sit before the staffer showed up.  This was when it was hard to keep Brennan awake, but he managed.

                                           

The last meeting of the day was with staff of Senator Jon Kyl.  It was a good meeting to end the day with because this staffer was very friendly, seemed genuinely interested in listening to Brennan.  And also she gave us passes to come back on Friday to sit in the House and Senate Galleries. 

It was at this last appointment that I felt so overwhelmed with emotion.  I was just sitting there and thinking about how just over three years ago I just wanted my son to live.  I just wanted him to be alive, stop having seizures, and be my son.  And here we were walking around the underground tunnels of Capital Hill and sitting in offices members of Congress and meeting staff and a some of the people who really are helping to make sure that there is Health Care Reform helps Brennan and people like him with "pre-existing" and chronic medical conditions.   

What a truly amazing day.

And Brennan refused to take off his cool threads until right before going to bed.  I think he wanted to keep the feeling as long as he could. 

Here's a list of the Members of Congress from Arizona that voted to pass Health Care Reform:

• Gabrielle Giffords (CD8)
• Raul Grijalva (CD7)
• Ann Kirkpatrick (CD1)
• Harry Mitchell (CD5)
• Ed Pastor (CD4)

 Remember them kindly the next time they need your help...like a vote or something. 

WAKE UP!!!!

The wake up play list for today:

It's a New Day by Will.i.am
Believe It Or Not -- the theme song from the TV show Greatest American Hero
Good Morning, Good Morning by the Beatles
You Gotta Have Heart -- a song from the play Damn Yankees

And now Brennan is out of bed!

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. 

D.C. Day 1

Since our room was not ready, Brennan and I decided to hit the streets in search of food and some sight seeing.  We were excited to see a current headline:

 
We got giddy seeing our first monument:

We were hungry, but also sure people in D.C. never eat.  No corner diners on the streets we walked.  There was a McDonalds, but we didn't come all this way to have an Egg McMuffin.  We decided to put off eating when we got to the Museum of American History.

But, guess what?  The Smithsonian feeds tourists!  There was a picture of all the food, but we look like gluttons and it may or may not be Kosher and Rabbi Barb is a "follower" so...

We'll just share a picture of a dessert that Brennan decided he really liked.  Part because it tasted good (kind of like cheesecake) and part because of the name. 

Rum Bum:

After our tummies were so happy we hung out a little in the very place that is the home to Fonzie's leather jacket and so many other important American artifacts.



After our exploring at this part of the Smithsonian was done our room was ready.  We had time to rest for about 2 seconds before we had to get ready for the Kids Speak Up! Welcome Dinner.

We cleaned up well:

But we were very tired:

Very very tired...
Here's Brennan right after we got back to the room after dinner:

Washinton D.C.

We made it! Here's a video of us freshly in our nation's capital. We are a little sleep deprived and a lot excited.

Newark.

We had one stop on our way to D.C. We would have missed the connecting flight if it wasn't also running late. We had time for a quiz on time zones and a little scavenger hunt.

Blurry Tuesday

We caught our flight last night around 11pm.  Fly about 4 hours to Newark.  Luckily we caught the connecting flight to DC.  We decided to be adventurous and take The Metro to our hotel rather than take the easy way out and get a taxi.  All went fine, but we couldn't check in until later.  So, we left our bags and ventured out.  We wandered around near the White House (but never really saw it).  We were hungry by then and wanted to find food and then head to the Air & Space Museum.  We went to the first Smithsonian building (the National Museum of American History).  There they had a wonderful cafeteria (we were wondering if people around here either didn't eat at all or only ate hot dogs and pretzels), and Fonzie's Jacket!  We looked around the TV & movie exhibits (Dorothy's Ruby Slippers, Archie Bunker's chair, etc).  We also went through some war exhibits...beginning with the Revolutionary and going to current Iraq/Afghanistan.  Before leaving we saw a performance commemorating the 50th Anniversary of a Sit-In that occurred in Greensboro, North Carolina. 

By the time we got back to the hotel to officially check in it was time to get ready to register for Kids Speak Up! and go to the Welcome Ceremony and dinner.  It was great for me to sit around and talk to parents.  I asked what the people at our table did about swimming.  We talked about the different medications our kids have been on.  We talked about side effects.  There were kids with a variety of other disabilities, but also people you might never suspect have any issues at all. 

One speaker talked about the kids never being ashamed of talking about it.  Gave me something to think about.  I never would imagine Brennan would feel ashamed.  I haven't gotten a chance to ask him...it's nearly 6:30 in Arizona and 9:30 here in D.C. and he's asleep already.  I'm only up because of the second wind (might have to do with the sugar in the baklava that I ate) because earlier I was so tired I could barely walk straight. 

We took a few pictures and videos of today's adventure.  I'll try to make time to upload a few things tomorrow.

Monday Night...

Preparations

Went shopping yesterday with Brennan to buy some fancy duds for his day on Capital Hill.  We had already bought a suit we thought would work for both this and his upcoming Bar Mitzvah, but Alan decided that it was too dressy and sent the two of us to buy a sport coat, dress pants, and nice shoes.  He forgot to give us some guidelines on taste and decency before we left.  And he sent US to get the clothes. 

We found a really nice sport coat (dark with thin blue and white pin stripes) in the men's section.  It was a 36 short, but we were told the brand ran small and was more like a 34.  I know women's sizing and when to go from the Toddler section of Target to the Big Boy or Big Girl section of Target.  I don't know 36 short or 34 or whatever.  I know that it looked damn good on my boy.  And he will leave an impression I'm sure with the turquoise dress shirt and green tie (that match his glasses).  It was also adorable to watch Brennan wear his pants to be marked for some tailoring--I went with cuffs because his dad is a cuff man.  I got a little teary by the end of all this shopping (and not just because of the price tag of it all).  I'm so proud of Brennan for having the courage to be his own person.  Pick his own green tie.  And feel comfortable enough to want to learn how to be an advocate for other kids. 

As for my own preparations.  I did a little shopping last week.  And now I am doing echinacea, peroxide gargles, saline nose spray, salt gargles, Airborne, lots of water, apples, and HOT wings.  All an attempt to move this nasty head cold that moved in just yesterday.  Out!  Out damn cold!  I don't have time for you!   

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!

In the Beginning...

In the beginning we had one little boy.  Brennan, we named him.  Cute little bugger.  Brennan was a fairly typical kid--that is if you consider WONDERFUL, charming, smart, adorable, and creating word puzzles out of the word supercalifragilisticexpialidocious at age 5 "typical."

Many of you already know Brennan's story.  But here's a refresher:

Brennan, established in 1997, was a kid who many called The Golden Boy because he seemed to be able to do no wrong.  He was the perfect big brother.  He did great in school.  He could yo-yo like no body's business.  And then on October 14, 2006, while visiting Tucson, Brennan had a seizure.  He was at my cousin's house while I was at my 20th High School Reunion.  My cousin Ann was watching Brennan, his two sisters, and had a baby who was only a few months old at the time.  Ann handled everything so wonderfully.  She went with Brennan in the ambulance and we met them at the hospital. 

Brennan stayed in Tucson (University Medical Center) and continued having seizures.  After about 3 days he was taken by helicopter to Phoenix Children's Hospital.  Alan rode with him on that trip.  Alan told me that the neurosurgeon met him and was confident from the beginning that he could help Brennan.  Between several CT Scans, MRIs, and Lumbar Punctures, it was determined that a tumor in his right temporal lobe was causing all the hullabaloo.  On October 23, 2006 Brennan had brain surgery to remove what we later found out was a protoplasmic astrocytoma--benign, if you were wondering.  

After the tumor was removed Brennan continued having seizures.  They were scary because he would occasionally stop breathing.  Brennan was admitted to Phoenix Children's Hospitals Pediatric Epilepsy Monitoring Unit--which had just opened up the week after Brennan had surgery (we refer to ourselves as the luckiest unlucky people).  At the PEMU, Brennan's medications were adjusted and we were finally sent home with a child who had his seizures pretty much controlled.  Of course some of the medication tasted bad, so he didn't have his gag reflex under control and he threw up a lot for awhile.  

Brennan came home from the hospital on three different medications.  A liquid we mixed with grape Kool-aid, a chewable that was mint, and these capsules we had to open up and sprinkle into pudding (and he had to take something like 20 of those a day).  Brennan is now down to one medication and he can swallow pills, so he can take the extended release and only has to take 7 of them a day.  He still doesn't like mint, but started eating pudding again, and will occasionally drink grape Kool-aid.  

Since 2007 Brennan has only had about 3 seizures.  He goes between 6-18 months between them.  There is no rhyme or reason to them, no "aura" to warn us before they happen.  They happen when he's awake or asleep, or when his parents are watching Borat (we were afraid anti-semitic humor could be a trigger), or when he was wearing shiny silver shirts left over from dance recitals.  No one really knows (real life ain't like TV doctor shows!).  

Last year Brennan went to a camp for kids with epilepsy:  Camp Candlelight.  He had a blast.  First time away from home in a few years.  First time meeting other kids with epilepsy.  First time seeing a seizure.  Not the first time being quizzed by his mother.  I asked him if it was scary to see a seizure.  He said no, and I had to believe him.  Even if he was scared the first time, by the end of the week any fear of seizures he may have had were non-existent.  He talked about the seizures like they were just so ordinary.  It took Brennan's explanations of seizures at camp for me to create my new game plan:  if Brennan were to have another seizure I would remain calm and not call 911 unless I really needed to.  

Brennan had a seizure about a month after Camp Candlelight.  We were in Tucson...staying the night at my cousin Ann's house.  The seizure caused Brennan to fall out of bed.  In my sleepy state it took a few seconds for it to register in my mind what was going on.  I stayed calm.  I rubbed his back.  I did remind him to breath--more out of habit than any breathing problems.  Brennan's whole body moves during a seizure, but this time it was smaller movements.  He seemed to wake up fairly quickly and become coherent faster than previous seizures.  He got up off the floor and told me he was pissed off.  He was angry that his body or his medications or whatever had let him down.  I just let Brennan go back to sleep.  I watched him sleep.  I made a game plan for if he did have another one in the night.  I held his hand the rest of the night in case I did fall asleep, but I didn't.  

The next morning Brennan woke up and asked, "It wasn't a dream, was it?"  He had a look of disappointment.  Any pessimism was gone quickly.  Brennan said, "Maybe I was supposed to have my last seizure at the place where I had my first seizure."  

That is my prayer every day.  That Brennan has had his last seizure.