Why Disney

So, why Disney? It’s a different kind of joy. It’s also a little defiance. There’s this video that parents of kids with disabilities post. The video is a reference to the catastrophic changes that happen upon learning of a diagnosis. Hurricanes. Exploding volcanoes. Natural disasters. I can say without fail, I felt every biblical revelation.

Back to Disney. I can talk about DAS, cast members, accessibility…. But it’s more than that. It’s proof of defiance. A choice. Either try or forever wonder. Get on the ride or assume she’s breakable.

I put her on each ride. I make a choice.

It may seem trivial. But over the years, each choice for "Bigger" has an equivalent mental choice to defy what should be the obvious. What looks obvious.

Keep it simple. Slow. Gentle. After all, she looks fragile.

Once upon a time Katy Blankenship and I put Ivey on Thunder Mountain. Matt and boys were across the park. I was terrified. Katy didn't have a second thought. I had many. Ivey giggle laughed…

My philosophy: It can only end one of two ways. A total disaster or a complete success. And door number three, sometimes a seizure.

Once upon another time, Ivey and I took a short girls’ trip to Disney. I asked her if she wanted to go “up and down” really fast. She signed “yes”. We rode the Tower of Terror. I was petrified. We are last to load onto the ride. I have to carry her into the car. That is why you always see her in the front row. I ignored the stares, very questionable stares. With the first drop, Ivey laughed. The grown man behind us screamed and cussed a little.

Together, Ivey and I defied opinions. Do you know how hard it is to ignore “a disability stare”? We defied stares. We defied the norm of what is allowed for someone “like Ivey”.

As a mom, I have a badge of courage. It took years. I ignore the stares. It still hurts. Every. Single. Stare. Every. Single. Day.

My girl may be complex, but she is not fragile. She may have scars and certain deformities- but she is not lackluster.

To get her here, it took courage. Every day takes courage. And defiance. A wall of protection.

Children’s has a t-shirt that says scars are a sign of strength…. The sign of a warrior. She wears the t-shirt well.

Do you know how many times I have sat at a table full of people with degrees based on disabilities and listened to them explain limits for "someone like Ivey"......

Well, figuratively speaking, "Hold my beer." I'll show you limits to "someone like Ivey" and then I'll raise you.

Here is what I see when I look in the mirror. A momma who is defiant and sees her possibilities in spite of the “disabilities”. I give myself credit for her success. There. I said it. I am the key to her success. It has taken a village, but I am forever the voice pushing everyone … saying more. I have never left her side. I am her constant. She is more. I am the one challenged with her Life. More Life.

I put her on the ride…….

I am the one leading the way. Cutting her path. Pruning the weeds.

Because of the long list of experiences I have shared with Ivey - traumatizing experiences - pushed to make literal life choices- watching her life fall to a thread- seeing numbers slump on a monitor- being the one, no matter the discussion with Matt- I am the final call in medical decisions- the weight of the cross is magnificent- most moms like me are too afraid to try whimsical- What if we are wrong? Make the wrong decision? Medical decisions drown us daily. I have learned to plan, prepare, play it safe.

At Disney there is a magic that makes fear feel freeing. There’s a choice to open a door.

I am afraid. All of the time. Every day. But I am more afraid of not pushing and finding our limits. I more afraid of the regrets of status quo’s.…..choosing the “people like Ivey” assumptions.

Today- for the first time, Ivey rode Rockin Roller Coaster. Speed. Full loop. (Upside down). Dark.

All of this may sound silly. But look at the odds and ask yourself - "What would I choose for Ivey?" .... If she were your child? If the choice were yours?

I listen to parents who constantly want the world to see their kids- but yet - don’t put them in the world. I am one of those parents., sometimes mired in loath that the world isn’t made for my girl.

No one can ever say I didn’t put her out there, out into the world. Through defiance of cultural expectations of disabilities, I show others a different path in the journey. I push back - I push back on my own fears.

And look at Ivey because of it.

It’s our own little fear experiment. In real life I am reserved. Skeptical. Regimented. Scheduled. Militant. But I also know she must live. And if I don’t try- what life am I giving her? Silly I guess. But, as fearless as she is, I am equally fearful.

Defiant joy.

Ivey is not fragile. She’s a warrior. And she does have this amazing - truly inspiring group of girls, her friends, her protectors, her caregivers- that see ALL of the possibilities in Ivey- they are also fearless and fearful at all the right times. They are the her wings. And they help me have courage - to let her try.

Courage should never ever be understated or underestimated.

Courage and fragile are powerful words. We get to choose how we use those words and which we choose to be.