Epilepsy Day at Disneyland

 

This morning was the first time in almost two weeks that I’ve sat down at an actual computer (versus the casual scrolling from my phone).

So I’m behind and I’m ahead in other ways.  It is what it is.

A couple of weeks ago was Epilepsy Day at Disneyland.  It’s a privately organized event held at the park and it’s the second year.  As you can imagine, Disneyland + Epilepsy Awareness is pretty much a match made in heaven for our family.

But this year was weird and different and I’m not sure we will go again.

Geez, that’s a lousy way to start a post, isn’t it?

The Cliff’s Notes version is this: just a few days before the event, the organizers announced on their FB page that you weren’t allowed to participate in any event activities (mainly big group photos and meet and greets), unless you had one of the official event t-shirts.  Words like “you just don’t count”, and “you don’t belong” and “can’t be a part of” were used…all because we would have the “wrong” purple shirt.

Certainly I could have bought shirts and picked them up the day of at a will call of sorts, but that wasn’t really the point in my mind.  I guess I thought the point was epilepsy awareness and “painting the park purple” in general.  And somehow, the exclusivity of that statement rubbed me the wrong way.  I’m not a fan of exclusivity.

But hotels had been booked, plans had been made, children had been told…so we went.  But it felt like any normal day at Disneyland (we are pass holders)…and actually, it didn’t.  Because we somehow felt unwelcome in the big theme park.  Like Andy said “I feel like we are misfits”.  (The park was still open to the general public, but it still just felt weird.)  And since we weren’t allowed or whatever to be in the group photos, it really just made it a regular day.  For as regular as a day at Disneyland can be.

But we made the best of it, and of course, we had a great time at the House of Mouse…we were just wearing matching clothes.

edd18

It was a much smaller group this year for us.  Just our little family.  The girls have moved to the East Coast, and my younger sister didn’t renew her pass this year.  But that’s okay.  We still love this place.

edd10

Obsessed with park maps, he likes to play tour guide.  Even if we have every nook and cranny of both parks memorized.

Somehow I feel like I can count this as homeschool.  Right?  Right.

edd11

It’s super hard to be short.

You have to wait with boring old moms while dad and the Bigs get to ride all the coolest “choo choos”.

So he hid under a bench.  But not before taking off his shoes in protest.

The way I figure it, the concrete at Disneyland is probably cleaner than my kitchen tile.  Knock yourself out buddy.

edd16

Every time we go to Disneyland, the kids beg to go on the teacups.

And every time we go, Andy and I have some convenient excuse like the line is too long or Hey Look!  It’s Goofy!

edd17

But there was zero line and these faces.

edd14

So I sucked it up and played Fun Mom.

They picked the purple teacup…because it would match our #teamjilly shirts.

I seemed to remember a rumor of some kind that the purple tea cups spin the fastest.  Because of course.

edd15

Mental note: fast spinning teacups at 9:15 in the morning is a quick way to get a second taste of breakfast.

Mental note #2: Being Fun Mom is overrated.

edd12

There was more waiting while the Bigs went on Space Mountain with dad.

Pretty sure there’s some rule about being barefoot at Disneyland.

But I’m also pretty sure there’s a rule about not bending down to drink that water too.  I may or may not have a photo of it.  But I may or may not want to send CPS to my home today.

edd5

Jill is oddly obsessed with Jack Skelington right now.  Which is interesting because I think she’s only watched the movie maybe once.  But she loves that skinny, creepy guy and was more excited to see him wandering around than even Princess Tiana.

edd6

She’s a selfie pro.

edd7

And loves to give me kisses when I’m wearing lipstick.  Because she knows her lips will be red too.  And I love that she understands that.  I love that she loves it.  She understands so much more than we realize.

She’s got a big ol’ brain under those pigtails.  It’s just stuck most of the time.

edd8

Sometimes, we are so used to her walking we don’t notice.

And then other times it takes my breath away.

And those times I burst into tears.  Don’t be alarmed.

Just Praising.

edd9
Always.

edd20

 

We went to CA Adventure the day before.

Once again, in an attempt to be Fun Mom I agreed to something I swore I’d never do: go on the giant ferris wheel.

ON THE SWINGING CARS NO LESS.

100% the only reason I didn’t burst into tears was because I didn’t want to freak out my kids.  Even Henry, who loves roller coasters that flip him upside down, announced that he didn’t ever want to go on these again.

Amen, Little Man.  Amen.

IMG_0486

 

#looknowalker IMG_0481

 

We snuck in some homeschool.

Two points for mom.

But just the math.  So maybe just one point.

IMG_0480

 

Hidden Mickeys are fun.

edd1

 

And warm hugs.

Maybe someday we’ll get our act together and get tickets to see Anna and Elsa.  Maybe.

edd3

 

In case you ever wonder if I stage photos, EXHIBIT A.

“Hey kids, stand in front of the castle!  Look excited!  Maybe throw your hands in the air?”

Thanks Lu.  That’s exactly what I was going for.

But how much do I love Henry and Jill?  Gah.

I have no idea where Porkchop is.  But he made it home with us, so it wasn’t too far.
edd4

Girl…you have no idea how much you are loved and cherished and celebrated.

You are worth every bit of it.  Every bit.

 

Related Posts Plugin for WordPress, Blogger...
jeannett
I'm a mom to four. A wife to one. I believe in story. I love telling you about mine and would love to hear yours. There's really no sense in wasting our suffering and not sharing in each other's joy. We're all in this together...even if it doesn't always feel like it.
jeannett
jeannett

Latest posts by jeannett (see all)

Comments

  1. 1

    Sorry to hear about the shirt thing. I’m sure yours were much than theirs. Suggest to them to let people make their own team shirts and have a contest for that. Of course, their is no money coming from that, so probably won’t like that idea. Glad you could still make a day of it as family again. They missed out on the cute little blonde who ROCKS. love you guys