This post is part of a series on epilepsy.
This year was the first ever Epilepsy Awareness Day at Disneyland. Incidentally, it was also the first year our family had annual passes to the park, and they expired just a few days after the event. So it felt kinda Meant To Be to attend.
There were no formal events or speeches…just a whole lot of purple everywhere you looked. The event had special shirts made up, but since we had our own made up for the Walk to End Epilepsy (next week!), we decided to wear our own.
It took forever to get there.
Traffic. Oh traffic.
We wore our entire get-up. From purple shirts to purple skirts to purple shoes. We even painted our nails purple the night before.
Ironically, purple has always been my least favorite color.
Because of course purple is the official color of Epilepsy Awareness.
Of course.
The park added purple touches throughout, like the purple Mickey behind us.
And it sure seemed like there was a lot of purple flowers scattered throughout. Although I can’t remember if that’s standard, or I was just hyper aware of it that day.
Thank you Martha Stewart glitter, Mod Podge, and clearance shoes from Payless.
The nice part about wearing the same thing?
Made it easy to find one another.
We joked that we should wear matching clothes every time we go.
Also, upon entering the park, a cast member asked: “Are you guys performing?”
Not officially, anyway.
One of the very first things I wanted to do was to buy a bunch of pumpkin spice lattes from the (new) Starbucks on Main Street.
The quick story behind this is that Alyssa Josephine O-Neill had just graduated from high school. She was enrolled as a freshman in college. She was 18 years old.
She died from a seizure on September 4th of this year.
On the last day of her life, she had asked her parents for a pumpkin spice latte.
She never got it.
And so, her parents started a pay it forward movement. That has completely taken the country by storm.
So on Epilepsy Awareness Day, during Epilepsy Awareness Month, in our Epilepsy purple garb, I bought five PSLs.
In honor of Alyssa. With love to her mama. From my own broken mama heart.
To say I wasn’t holding back tears as I scribbled in Sharpie would be an understatement.
Thank you sunglasses.
(You should follow them on Facebook. Way better than bad pictures of random high school classmates’ lunch.)
Because I cannot imagine.
We joked that Jill would now expect us to forever wear shirts bearing her image.
And that if she could talk she would decree that it become the Family Uniform.
Even the Porkchop had a bitty little #teamjilly shirt.
We spent the day enjoying the park.
Exchanging knowing smiles to anyone in purple.
Acting like goofballs. Dancing in the streets. Joking that we were going to jump in parade routes and pretend we belonged there (after all, we had the moves memorized after a year of watching them).
Everyone pulled together for a bigger thing.
For their little sister.
(This picture slays me. This is how she looks at him. Always.)
Tessy bought cotton candy.
We made her share.
But she got to take the first bite.
Hands free.
Because she’s a rockstar.
And cotton candy is practically cake.
It was an interesting day.
In many ways it wasn’t much different than any other trip to Disneyland.
But somehow, wearing these obnoxiously purple get ups and seeing so many others in matching colors, made it feel different.
I can’t explain it.
But it was good.
Henry had excitedly wondered if they would paint Tom Sawyer’s Island purple for the day.
They are already planning next year.
And you better believe we will be there. And we will not miss this.
The Walk to End Epilepsy is next weekend.
We will don our purpleness again.
We will jump and skip and walk.
We will cheer on our girl.
Have you made a tax deductible donation to our team page yet?
Even five dollars. It all adds up. Promise.
Just one week left!!!
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What a special day!
me no likey purple. but i love jilly. and you guys looked adorable. even though… purple.
lindsey – the pleated poppy´s last blog post ..thankful printable and something for our military
I just found your blog today from a friend whose twins have CP. I knew that I would feel a kinship in being a special needs Mom myself, though my daughter does not have CP. She has Epilepsy, and is having a cortical resection this Thursday, and I’m really scared. It’s nice to know that people like you are fighting for my baby, and I didn’t even know it.
Thank you,
Carrie