The Dream

Ever take a vacation, have it end and then realize you need a vacation from your vacation?

Now let me premise this with I completely understand that traveling to Disneyland with a baby and a four year old is insanity in itself but there’s regular insanity and then there’s lose your mind insanity.

Here’s what I believe a “normal” experience with kids is. Complaining about waiting in the long lines. Lots of “I’m hungry, I need to pee pee, are we almost on this ride? Mom mom mom mom, mooooooooooom, ahhhh, crying, cheering, screaming, spilled drinks, wrecked souvenirs and lots and lots of exhaustion, all bundled up and mixed in with fun.

Now ever taken a trip with a two year old in a seven year olds body? Well, that’s what visiting Disneyland with Ailbe is like. Super fun, but incredibly challenging at the same time. Each time I go in with the highest of hopes.

This will be the time.

She’s come so far.

See she gets it now.

She can handle this.

She will have fun.

We will be a normal family for once.

And sure, we have fun. We LOVE Disneyland. There are so many incredible accommodations at Disney and praise God for that.

Bee has a disability pass. Disney allows those with disabilities of all sorts to be assigned a time to return to a ride of their choice. One ride at a time and you can go on any time after your allotted return time (just like fast pass). On most rides you walk in the back entrance right on the ride, some you wait in the fast pass lane. Now why does my child who is SO incredibly physically gifted for a regular NT child never mind a child who’s suffered from Infantile Spasms get to wait in that line, and sometimes get to walk right on the rides. Well let me first say the main reason is because she deserves to experience Disneyland and enjoy the Disney spirit like any other child but secondly because what Ailbe does in line severely differs from that of a “normal” neuro typical child, even the most “challenging” ones. Ailbe generally can stand for about thirty seconds before she either needs to be held (all 48lbs of her), walked around, allowed to leave or my favorite chased 😝. Now who doesn’t like a game of chase? ME! well I love chase but not every second of the day.

Imagine every single second of the day not being able to be alone. Literally not able to buy a drink at the store because just opening the pouch on your lanyard because the damn lady won’t scan your card through the plastic on the card holder that you bought specifically for this very reason so that you would not need to take your hand off of your kiddos, but no, lady of the year makes you take your hand off your kids and open your lanyard and right as you do your kid drops to the floor, you pick her up, she drops again and you’re secretly cursing this soft jacket that Grammy bought her to keep her warm because you can’t grip her arms and she knows this so she slinks down again and this time you’ve got your child dangling in the air by the back of their jacket and EVERYONE is now looking at you MOTHER OF THE YEAR and so you let your child stand before you get reported only to have her run off smack into the lollipop aisle where she proceeds to smash three $10 lollipops on the floor and start eating one of said pops. The kind lady behind the counter asks for PICTURE ID while all of this is happening and with sweat dripping off your face, three smashed lollipops, one in your hair, a happy 48lb four year old on your hip the sprite is now paid for and within 30-120 seconds you’ve managed to wreck the store, lose three pounds in sweat and fight holding back the tears.

The tears.

Yes, the above experience is funny. I know that. It’s super funny and we 98% of the time deal well and don’t feel at all like we are dealing because Ailbe is our whole world but I did want you to know what it’s like for me to get a drink with my four year old child and don’t get me started on when she starts to roll on the floor or when she decides to pull my hair and bite my head at the same time leaving me literally feeling paralyzed because there’s no way to move to keep her safe without me being in serious pain.

Why does she do this? She goes into fight or flight mode. She doesn’t understand why she’s being asked to wait and feels restrained and she’s suffered PTS from her hospital stays. She had to be restrained by myself most of the time and occasionally Johnathan for countless blood draws and tests (the major ones she was sedated) and the other option was to wrap her in a towel to restrain her. I always had a “say what” expression on my face when they’d actually suggest that. So anyway, she thinks something bad is going to happen and she doesn’t understand wait for very long just as your two year old wouldn’t. But your two year old isn’t 48lbs and doesn’t have division one track speed and that’s not just me being a proud mother, ask any of our friends Ailbe was a ninja in a past life because she has serious skills.

She “fights” (bites, squirms, kicks, pulls, hits) or she “flights” runs anywhere she can, ducks out of the way, into a small space, tunnel, need the nearest exit in a hurry? Ailbe’s your gal.

So, don’t get me wrong. Yes, papa and I aren’t speaking, my sister bought me a one way to the moon, Ailbe looks like she was dragged through a bush backwards, Isla looks like orphan Annie and a $1000 or more less wealthy we did have a good time. Sure we don’t have the “normal” experience at Disneyland, but we have normal moments. Those moments are ones that are frozen in time for me, I put my phone away, my camera in my bag, my eyes shut and I just hold my girl. In those moments I smell her, I smell her skin, her hair and soak in all her happiness. I don’t need to be watching to know she’s having a normal moment, I use my other senses to experience the moment. I don’t care who’s watching, I don’t care what I look like I just WANT this normal moment. It’s all I’ve ever wanted and it’s all I strive for in our experiences. Sounds silly and not possible I know, but that’s why I’m that high strung mother like many others just hoping to make things the best for her kids, annoying the hell out of everyone else but that smile on Bee’s face makes it all worth it. Every effort, every fight, every tear, every challenge.

We stayed at the Grand Californian. A spectacular hotel to say the least. Extremely expensive but oh so worth it in it’s beauty and all it offers from early entry to the parks, to visits with Santa, to carolers serenading the night, to cozy fireplaces, live music, beautiful Christmas trees, Christmas ambiance everywhere, helpful staff and happy people everywhere. It really is a MUST visit place!

IMG_4564.JPG

IMG_4560.JPG

A huge perk of staying at the Grand is having access directly to California Adventure and it makes napping super easy. Go out in the morning have fun, nap and back out again for the night time Disney fun with happy kids! Well rested happy kids. Not those cold bundled up little snuggled stroller kids (although they’re super cute too!) you just have to experience the ease of this hotel!

At California Adventure this trip I fell in love with a park that I had always discredited as a second best location. I had no idea how amazing it truly is and how much it offered! Ailbe loved seeing Ariel on The Little Mermaid

IMG_4613.JPG

Loved Mater! Mummy did too and we even got papa to laugh on this one!

IMG_4598.JPG

But I do think her favorite spot was at the wilderness explorer camp where she zip lined on tires, climbed, slid, and scooting every which way. A perfect spot for your active kiddo!

IMG_4603.JPG

IMG_4601.JPG

IMG_4602.JPG

Over at Disneyland Ailbe had a blast too! From the tasty treats offered seasonally, to the yummy snacks, to the rides and just the amazing atmosphere that is Disneyland Ailbe and we all really enjoyed ourselves. Disney again making it much easier on us mamas with kids and kids with disabilities also.

Small World is our favorite and at night, well it’s a must see!

IMG_4589.JPG

IMG_4588.JPG

IMG_4593.JPG

IMG_4592.JPG

And my favorite, our family selfie😝

IMG_4576-0.JPG

Another first was a ride on the teacups. She saw a few people sitting in the teacup that people normally use for pictures and quite calmly she walked up to them and nudged them over as she sat with them in the teacup saying “Go” several times. They all got a good chuckle out of Ailbe and her fun nature.

IMG_4572.JPG

IMG_4574.JPG

IMG_4573.JPG

IMG_4571.JPG

She had a super fun time decorating cookies with Santa and Mrs. Claus as well as various other characters at the Christmas Jamboree.

IMG_4624.JPG

IMG_4620.JPG

IMG_4628.JPG

IMG_4627.JPG

She even braved the Haunted Mansion but no pics and not ready to repeat that one again, but thanks to Jack for making it a little less scary 😊

All in all our trip was super fun. I’m beyond exhausted, feel like I ran the LA marathon, and need a margarita but we had fun. My kid smiled a lot, pointed and said “oooh” over and over again and for that I am forever grateful to Walt Disney for.

A special thanks to Papa for funding this trip, for braving us and not killing mama.

A special thanks to Auntie E and Scotty for chasing Bee down several times and braving her on their shoulders during potty training😝

Merry Christmas everyone. Thanks for reading. 🎅

2 thoughts on “The Dream”

  1. I loved reading about your trip to the happiest place on earth! I really appreciate hearing about your experience and seeing a trip to Disney through the eyes of a mommy with a child that has a disability. Thank you for sharing this with us. Your honesty, humor and detail are incredible. Keep up the good work! I can really hear your voice when I read now!

    Liked by 1 person

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out / Change )

Twitter picture

You are commenting using your Twitter account. Log Out / Change )

Facebook photo

You are commenting using your Facebook account. Log Out / Change )

Google+ photo

You are commenting using your Google+ account. Log Out / Change )

Connecting to %s