This post is part of a series on epilepsy.
So, you might have heard a little whisper that our family was participating in the Walk to End Epilepsy last weekend.
I didn’t talk about it much.
You might have missed it. ;)
So here’s the funny thing: I knew I wanted to highlight epilepsy on the blog. I knew I wanted to fund raise for it. I knew I wanted to go. For me. I wanted to know what it was like to be at something like this. To admit that our Normal has a FOUNDATION for support. Somehow that terrified me.
But I honestly thought it was going to be me, Andy and our four kids. Our family of 6.
I didn’t think to invite anyone to come.
I’m not really sure why not…maybe I just thought it seemed like a lot to ask people to spend half their day walking around in a circle. I don’t know. It just honestly never occurred to me. Or maybe I didn’t want to impose.
Except that pretty much EVERYONE in our family jumped up and said “We want to come too! Can we come?!”
Um, okay. You don’t have to. Really. It’s totally fine. It’s really not a big deal. You can just wear your shirt on the day. It’s far. It’s just walking a mile. Don’t go out of your way. Really.
I really do hate to ask.
But out of their way people came.
Some drove 6+ hours. Some took mornings off from work. Some walked even though their knees ached.
We met up an hour before the Walk actually began and milled about.
Slowly the troops amassed and my group of 6 grew and grew.
There was lots of posing for cameras.
There were signs that were mostly inside jokes that made each of us laugh out loud, but probably confused every other walker.
There were grandpas loving on blankie hugging babies.
There were curly haired beauties getting special rides from uncles.
There were great grandmas and little girls who become inseparable the minute they are within a 5 mile radius of one another.
There were big brothers labeling buttons of support in perfect 6 year old penmanship.
There were tired babies refusing naps.
There were impromptu dance parties with silly signs.
There were more signs made with messages of support.
There were cuddles with baby cousins.
There was photobombing.
And even more photobombing.
There were Porkchops on the loose…
And more baby cuddling.
And that was all BEFORE the walk even started.
It was finally time, and our team was READY.
The guest of honor at the helm.
Smiles keeping us all afloat.
And so we walked in a great big circle.
It was nothing fancy or really all the interesting.
We really could have walked in our own backyards.
But we didn’t.
We walked for her.
Even the littlest of the group supported in his own Porkchop way.
Walking in our backyards though, wouldn’t have afforded us this view.
Or even sky writing over iconic Americana. (Even if it was just computer generated. Details.)
Dear Pasadena, if ever I had to move back to Los Angeles, I choose you. Your giant old homes and canopied streets are my favorite. I need about four million more dollars in my bank account…but still…I’d totally choose you.
There were cheers from girls who are not cheerleaders and who were embarrassed to the core while doing this.
But did it anyway because she was worth the embarrassment.
We belted out songs from The Little Mermaid because Cake and Ariel are pretty much all Jill needs in life.
We hooted and hollered and were quite possibly the most obnoxious group there.
And at the finish line, we made her a tunnel.
A tunnel built with so much love I could burst.
At the end, the live band played, and we danced.
They even gave her their tambourine.
And then they traded her for a maraca which she used as a microphone and BELTED. IT. OUT.
There was so much LOVE.
Everywhere I looked one of my babies was being cuddled and kissed and tickled and tossed into the air and just absolutely LOVED.
We’ve always felt supported and loved, but Sunday was the physical manifestation of it all in one setting.
They all wrote notes on her sign. Commemorating a day of support.
They were all here. All 36 of them.
And my kids had only to choose which arms to get a hug from. And they did. All morning long. I don’t think there was a single moment when at least someone wasn’t getting a squish or a kiss.
It was just LOVE.
And the band played and my girl danced and I was trying so hard to keep it together.
The love was almost more than I could bear, but underneath there was a bittersweetness.
Because as my girl danced and sang into a lime green maraca, there were groups there in memory of a child gone home too soon.
Not more than 10 feet behind my singing girl was a solemn group at a table. Their team name homage to their boy who was not dancing and spinning and being tossed in the air.
And it reminded me that underneath the celebrating and the cheering and the silly dances and the goofy signs, the reason we were there was to fight tooth and nail to find a cure to a disorder that can be deadly.
A disorder that affects 1 in 26 Americans.
A disorder that would devastate these same smiling faces in #teamjilly shirts.
I will not stop cheering for my girl. Or the girls and boys of anyone living with epilepsy.
But at the core of what we were doing that day was a very real and very serious FIGHT. Behind our smiles must also be determination and a willingness to not remain silent about epilepsy. Along with the donning of purple we must also write the checks and speak the words that make the difference.
People must understand that seizures can be so many things and look so very different.
Funding for research must be raised.
I want the Walk to End Epilepsy to be a thing of the past. A relic of times long forgotten.
So that families can hang on to their babies longer.
So that mamas can breathe easier.
So that families can sleep soundly.
So that seizures can not rob even one more second. Not one more memory. Not one more moment.
I’ll continue to collect for the fundraiser for a few more days.
If you haven’t already, please consider donating.
Research. Awareness. Support.
It needs to happen.
Those teams who can only carry photos…they’ll tell you just how badly.