Never is not in our vocabulary

One of my newer co-workers came into my office yesterday and saw pictures of my children. He asked about them, and being the Mom that I am, I went on and on. He’s probably sorry he asked. However, one comment he made really threw me for a loop. He said in reference to Ashley, “It’s just so sad all the things she will not be able to do in life.”

I was in shock for a moment, and my weak response to him was “Of all the words I could use to describe Ashley, sad is not one of them.” He soon left my office, but I spent most of the evening and half the night thinking about his comment – that’s probably because I have never really thought about what Ashley will not be able to do, but rather, I celebrate everything she does do, and it’s a very long list.

So, in an effort to make sense of my feelings about my co-worker’s comment, I started thinking about the things in my life that are important, how I am able to do them, and contrasted those things with Ashley’s abilities. My conclusions were interesting.

First, there are not many things I can’t do, and the list of things I can’t do doesn’t really bother me. For example, I can’t change the oil in my car – I can’t go on rollercoasters because they scare me to death – I can’t peacefully coexist with camel crickets in my house – I can’t really do a good job of urinating while standing – I can’t sleep during a car trip – I can’t square dance – I can’t give birth to a litter of kittens – I can’t eat brussel sprouts – I can’t speak Spanish or French or German – I can’t tell a joke without messing it up – I can’t do a cartwheel, and I can’t wear socks while sleeping no matter how cold my feet are. I’m sure there are many other things I can’t do, but overall, I don’t feel my good life is jeopardized by that list of things I can’t do.

So how about Ashley? Well, she can do a lot of the same things I do. She can do her laundry – she can clean house – she can cook – she loves rollercoasters – she can love and express that love quite well – she can be quite opinionated and can argue extremely well – she understands the concept of exchanging money for goods and services – she can bowl – she can roll her tongue into a “V” (I cannot) – she can throw a ball really fast over her head – she can do a marvelous Donald Duck imitation – she can communicate when she is sick or tired or hungry – she can give herself her own medications through her G-tube – she knows which plants are poisonous and which aren’t – she can read and use a computer – she can operate the TV remote control and she can hide it so her brother can’t find it to change the channel from Sponge Bob Square Pants – she can tell the cats to stay off the furniture – and she can eat a pound of spinach leaves.

Actually, I can’t think of anything she can’t do. If she wants to date and marry, she’ll be able to. She can have children if she wants. She will be a very good caretaker for a child, and hopefully she will help care for me when I am old(er).

Oh yes, I did think of something she won’t be able to do – she won’t be able to drive unless there are some major technological changes in transportation. She has epilepsy and in our state that means no driver’s license – well, that and the fact that she is blind. Her brother, Chip, said that just means she will have to live in New York City because nobody there drives. And she can sure raise her arm and whistle for a cab.

Now I wonder just what my co-worker thought Ashley would not be able to do in her life because I can’t come up with much.

Oh, and if you are wondering what disabilities Ashley is tagged with, here is the list:

• Fetal alcohol syndrome
• Deafblindness (profound hearing loss in right ear, severe loss in left ear, totally blind in left eye, 20/2000 in right eye)
• ADHD
• Autism spectrum disorder
• Epilepsy
• Juvenile xanthogranulomas (a rare disorder that causes tumors to form – she currently has three brain tumors, and has had two in the past)
• G-tube for past feeding issues, now used solely for medications

Deborah can be found writing here at 5MFSN every Wednesday, and can also be found at Pipecleaner Dreams.

In addition to her job as a computer engineer and her single parent responsibilities, Deborah is president of a state-wide family support group for families whose lives are touched by deafblindness, and is a tireless advocate for all people with disabilities. She writes at Pipe Cleaner Dreams and her writing has also been featured in local magazines and newspapers. Ashley’s story has also been chronicled in a book by Jonathan Mooney titled Short Bus Stories.

Deborah

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