Saturday, March 29, 2008

Long Walk, Long Journey

What a beautiful day for a walk! Today saw 50 degrees, blue skies and literally thousands and thousands of people walking on the National Mall for Epilepsy Awareness.

This picture is of Amanda at the finishing line, along with her new friend Julia. I'd met Julia's mom through an online forum, and was surprised to actually bump in to her and her family at breakfast this morning before we left the hotel. Julia is 7, and although very shy, seemed to grow pretty attached pretty quickly to Amanda. They walked much of the way together, and at the finish line, ran across together. Julia is something of a snapshot of Amanda's first 7 years, which was very interesting--especially to the moms who, much to Amanda's deep embarrassment, compared nearly every event of their lives, small and large, during the entire course of the walk.

Below is a short video (do NOT expect Steven Spielberg to show up here!) which gives you just a small glimpse of the vast numbers participating today. It's hard to see, but the line of walkers went in front of us all the way up the mall, and around the corner. We were somewhere in the middle of the pack, so the line of walkers was far behind us as well.

Among single and family walkers, there were groups where t-shirts with pictures pinned 'in memory of' various loved ones, as well as groups who were focused on bringing awareness and help to people who suffer from specific types of seizure disorders (Lennox Gastalt Syndrom, Myclonic Seizures, Infantile Spasms, etc.). But what was most amazing was the number of people who were out, walking, either as a person, or loved one of someone, with seizures.

The forums afterwards were a mixed bag. Mine was ok, but covered a lot of territory which was already pretty familiar to me. Towards the end, I slipped out and snuck into the back of the room where the 'Teen Challenges' forum was taking place. I hung out in the back, hoping Amanda wouldn't see me, and listened to some early-twenty somethings and late-teens sharing personally and candidly about dating, relationships, friendships, driving, school and the things that are of most importance to people who are around Amanda's age up to beginning college.

If I tell you there were a few gut-wrenching moments, I'd be grossly understating things. One girl in particular shared how she'd been in special-ed classes through all of school because of her seizures, and had spent her life feeling hurt by other kids comments, since she needed extra accommodations in some of her work. "I just hate it when people say I'm stupid!" she cried. At that moment, Amanda, who had not said a word during the entire conference, looked up from the shoe she'd been picking and yelled, "I know! Me too!" The other girl then burst into tears. Amanda moved over to her, and the leader of that portion of the meeting stopped to give the young lady a hug. There were several moms in the back of the room by that point, and we all fell apart.

It was interesting that not one other kid in the room cried....only the moms. I suspect it's because these kids have felt this often enough that it doesn't move them too extraordinarily to hear it from someone else.

After a few minutes, I pulled myself together and snuck back out, since the forum was almost over. I didn't want to be 'caught' eavesdropping, and wet-eyed to boot. I stood outside and waited. A few minutes later, Amanda strolled out. "How was it? What did you think?" I asked. She answered, in the true spirit of a 14 year old, "It was fine." (Insert sound of my hand mentally slapping my forehead here.)

Later, in passing, she told me that she was pretty surprised to learn that she's not the only one who goes through some of this stuff. Well, there you go--I guess that is as good as it gets. Fortunately, I got to see with my own eyes that it was a little more significant than 'fine' for her, and probably for all the other kids in the room, too.

Oh-I didn't mention yet that because of a last minute hitch in the registration process, we had to walk to another hotel to pick up our numbers, and then hike back and across over to the walk itself. By the time we got to the walk location, we had already walked several miles. We are both dealing with some seriously barkin' dogs tonight, and are too pooped to head out for dinner, which is fine because we probably couldn't squeeze our feet back into our shoes on a bet. We're exhausted, but in a pretty good way.

Blessings,
Megan

PS-Our neighbor Ashley, who underwent 12 hours of brain surgery yesterday for an aneurysm, was taken off the ventilator today and we are told she is doing pretty well. Thanks especially for your prayers for her!

2 comments:

Rebecca said...

It's so good to hear you've had such a wonderful experience. Luckily, you can have ethnic meals of 900 varieties delivered in the DC area (one of my favorite parts of the city). Here's praying for safe travels on your way home, fixed feet and a continued committment to supporting and encouraging others!

RickRack said...

Your fans are waiting for an update!!