Friday, August 14, 2015

What a Butterfly Taught Me About Living with a Disability

We had a pretty bad windstorm in our small town this week. Limbs were down, and pine needles stuck straight into my window screens. We saw trampolines and trash cans out of their designated spots all around the neighborhood.

Just after the storm, I got out in the back yard to sweep up, pick up, and blow away the leaves and small branches that had fallen, and I spotted a butterfly (looked it up -- it was a Red Admiral Butterfly). It was hurt; one wing was broken. and it was unable to fly. It jumped a foot or so at a time, but as hard she tried, she couldn't quite lift up off of the ground. 

Now, I am pretty much an expert on saving creatures in the wild. Put them in a thing. Give them food and water, and release them when they are all better. Yep, I'm a regular veterinarian. Baby birds fall from trees and kittens get lost and such. But can you nurse a butterfly back to health? I wondered.

Once a delicate little wing is broken, can this butter ever fly? (Sorry). My kids had decorated a mason jar at Bible school, so I decided to launch a rescue mission. I scooped up the little butterfly with the jar, which already had woven paper with nice air holes across its top. My husband Chris remembered that the butterflies at the Insectarium in New Orleans liked bananas, so after I placed a damp paper towel in the jar, he added a slice of banana later that night. 

And I guess it was resting. Eating through it's freaky little tongue-straw. Frantically trying to escape through the top of the jar. 

We left her alone for a couple of days. And the wing was still broken. It looked as though our little friend was permanently disabled. What could we do? Like, can you buy prosthetic butterfly wings on eBay? Is that a thing? How freaking cute would that be? Somebody get on that.

Can a butterfly with a disability survive in the wild? Wouldn't she just get eaten immediately by the first bird that spotted her, despite her efforts to hide the bright orange on her wings and display only the leafy gray and brown of the underside?  

Our family knows a thing or two about disabilities. Our twin sons, Jack and Woody, were born with Spina Bifida, which is a permanent physical disability that has partially paralyzed them and has made getting around very challenging, among other things. 

It was impossible for me to watch this broken little butterfly in the jar and not reflect on the nature of disabilities. They suck. They suck for the people who have them, and they can suck for the caregivers. It just is what it is. 

My son Woody wants to carry his backpack on his back, not on the back of his wheelchair or strapped to his chest. Jack wants to jump off the diving board like the other kids do, not from a seated position. And all we can say to them is: "Well, we can either do it a little differently, or not at all. Letting it get us down won't help anything, so let's just figure it out!" 

I decided to let the butterfly go this morning. And let me tell you, not everyone would agree with this decision. Some might say, "But it will just get hurt, stepped on, or eaten! Keep it in the jar. Maybe it can live longer at least. Maybe it can get used to life in a jar. It'll be safe." 

I am not confident that I did the right thing, but as a mother of two boys who are disabled (not a bad word), I simply felt like she needed to get out. Screw being safe. Life in a jar is poo.

People with disabilities just want to get out -- to play, to work, to travel, to live life. It might take them a while to get where they are going or to do what they want to do, but shouldn't we let them try? Should we stick them in a separate place only for fragile people because it is inconvenient for us to have them around or because it gives us the heebie-jeebies?

Our butterfly was thrilled to leave the jar even though she had everything she needed to survive. Because she didn't have what she really wanted: the freedom to hop clumsily around my back yard and just be a butterfly. 

To be free.

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