Ready for Takeoff

This is what Cora and I did after I got home from work the other night.

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For those of you too lazy to click on the first link.

I’m sure you’re thinking to yourself: That doesn’t seem like that big a deal. My kids liked it too.

Fair point. But to me, this was a really big deal. In fact, it was a huge deal. Why? Well, when you’re disabled, a lot of your life gets couched in terms of what you can’t do. That’s not meant to be a depressing anecdote, it’s just the reality of the situation. Cerebral Palsy, which is my disability, it sort of unique in that it can affect pretty much whatever it wants. So a lot of my life has been spent figuring out things I can do and things I can’t.

As I may have mentioned, my type of CP is called spastic quadriplegia, which means, essentially, that the muscles in all four of my limbs suffer from tightness.

Now I’m pretty lucky, all things considered. I’m not equally affected in all four limbs. My arms are much better off than my legs, and my left arm is hardly affected at all. Which, as you can see comes in handy when there’s a gallon of Ithaca Root Beer to drink.

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Here’s the thing though: Some things are easier to hold than others. Growlers of frosty cold root beer, while heavy, do not move, which makes them pretty easy for me to hold, despite the CP impacting my gross and fine motor skills.

Babies? They move, and they don’t understand concepts like “Cora, don’t squirm, Daddy doesn’t want to drop you.”

Let me back up for a second. Before Cora was born, Ashley and I had a lot of conversations about our impending parenthood. Communication is one of the most important things you can have in any relationship, whether one of you is disabled or not. But it was especially true in our case. Like all parents, we were going to have to learn on the fly, but we wanted to make sure we were on the same page, so to speak. So we talked about everything. Hopes, dreams, goals, and challenges. One of the strongest aspects of our parenting is our ability to communicate.

One night, I told Ashley one of my biggest fears. I knew that I could teach her lots of things, from the greatness of Josh Felicetti and other Bomber football legends, to the

15590467_10101244928260719_1291985393924818608_nmagic of Roadhouse, to a love of printed books. But what if I couldn’t play with her? What if my spasticity made it hard to lift her, or swing her, or bounce her?

 

Here’s the thing: I’m okay with the fact that I can’t do certain things. It’s not that I’m unmotivated; it’s just the reality I face. And I believe that life’s too short to be bummed about things like that. One day, Ashley and I went with two of my nephews to a town fair. This wasn’t Disney, with special lines and helpers at rides. This was a small town fair, and there was no way I was going to get on some of these rides. So I hung out while Ashley went on a roller coaster with one of my nephews. It was fine.

And one day, we’re going to have a talk with Cora about my disability, and what it means, and how there might be some things Daddy can’t do. (Not a lot of things, mind you. I’m disabled, but I’m still pretty amazing.) My daughter’s already pretty smart, so I’m confident that she’ll understand things.

But that’s for a few years down the line. I didn’t want to deal with that right away. I wanted to make Cora happy all the time. And I was scared I wouldn’t be able to.

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Ashley, being the amazing wife she is, assured me that I’d be able to play with Cora. But there was always a little nagging worry in my head. What if I can’t?

 

So every time I try something new with Cora, I’m facing that fear. It’s tough, because like all parents, I want to be the superhero who can do everything. Unlike all parents, I worry that the things I can’t do will be the simplest things. I’m going to be honest with you: the first time I tried to lift Cora up over my head, I was scared. Was this going to be the first of the things I can’t do?

Cora’s only three and a half months old. She doesn’t understand that I’m in a wheelchair, and that my right hand isn’t very strong. She certainly doesn’t know what spastic quadriplegia cerebral palsy is. Her world is pretty simple. There are things she likes (baths, diaper changes on the sectional, early mornings) and things she doesn’t (being interrupted while eating, staying up past 7:00 at night, Cortland State).

And last week, she found something else she liked. Playing airplane. With her Daddy.

 

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3 thoughts on “Ready for Takeoff

    1. Shana, I totally get it. There are things I can’t do with Cora that my wife can. Sometimes it bums me out, but Ashley always reminds me, we both have our strengths as parents, and we support each other.

      And our kids love us no matter what, and that’s the really important thing to remember. We’re doing a great job as parents!

      I’m so glad you can relate to the post, and I hope you continue to visit the site and find useful information.

      Patrick

      Like

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