Friday, September 27, 2013

We Have Nothing to Fear, but...


I am scared of the Buddy Walk.

I am trying to hype myself up, I am trying to get excited, I am trying to tell myself that it is going to be the most amazing day ever. But, honestly, I am scared out of my mind. There is a lot in my mind that contributes to that fear. That fear is so raw to me that it has been hard to discuss it or want to write about it, but here it goes.

Truth be told, the idea of seeing such a large population of people with Down syndrome makes me very nervous and very anxious. Some of it is related to old, very entrenched stereotypes and some of it is related to new hopes and dreams.

First, the old, very entrenched stereotypes. I think that humans, in general, fear what we don't know. If we face things with an open (educated) mind and pure heart, then more often than not, those fears go away. Other races or ethnic groups, new groups of potential friends, a well formed work force, all of these things can contribute to nervousness and anxiety. The same goes for a large group of people with special needs. You aren't sure what to expect, you don't want to offend or say the wrong things, you want to feel comfortable, you want them to feel comfortable, and it's just new. I think we all worry about what is new. Some of this is left over from my life "before". We often live in an "us" and "them" society and part of me still clings to the idea that people with Ds or special needs are part of them. Some of me worries about outbursts, unexpected reactions, and of people that are different. It's not that I wouldn't treat someone or hadn't treated someone in the past kindly, but it is very much attached to the idea that I had before of some sense that I had the right to look down on others and pity them. And there has been so much less of that with Johnny in my life, but it's still something that I work on. So at the Buddy Walk, I will have to fight that everywhere I look. I worry that fighting it will become too overwhelming.

On the other hand, and this is related to my hopes and dreams, I fear "seeing" Johnny's future. It is so easy for me to look away from the extra chromosome right now. But going to the Buddy Walk, being surrounded by 10 year olds, 20 year olds, 30 year olds, and all ages in between, above, and below, that's another matter all together. To see older people who share his look, his features, his extra chromosome and see what they are not capable of (because we are entrenched in fear right now), makes me worried. I so appreciate the parents who have fought this fight before me. They haven't just paved a road, they have carved a path up a very steep slope, and laid out brick by brick the road we will travel. The road that I take Johnny down is very, very different from the road 10 or 20 years ago. Early intervention has changed everything. I hear this over and over and over again. But I still get scared over losing those hopes and dreams that we have for Johnny. We have already altered much of how we define success for him. I worry that with seeing adults with Ds, adults that didn't have the benefits that we have, that are sometimes very much resigned to a different fate, that it will shake what we work on with him and pray for him every day. I worry that with seeing people that didn't have ECI, OT, PT, ST, tons of doctors, extra monitoring, research, and support groups, that the mantras I tell myself will come crashing down. I'm scared that it is just an illusion that I have created for us and I am very scared that seeing the typical situation for adults now create rips in that facade of normalcy that we hope for Johnny.

I know that none of it has to be this way. I know that in reality, after some initial nervousness, I will probably have a blast spending the day with my family, our community, and others. I know that I will smile at all the parents who have forged ahead before us and hug my friends that walk with us on our journey. I know that Johnny will become exactly who he is meant to be, and that if the past 11 months are any indication, he is going to be great. Thus, I keep reminding myself to focus on Johnny, focus on what I can change for him, focus on what I can do for him, and focus on our direct community who can help impact the community at large. The fear is there, but I am hopeful that I can squash it. I think I will always have the fear of who he will become, but I worry about that with all of my kids, chromosomally enhanced or not.

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