My Reasons

After reading a comment about a post I wrote, I decided to add a page about me. The “Our Journey” page mostly deals with the physical, health, disability, and diagnosis road we’ve traveled up to this point, and that I share these things so that anyone else on this road doesn’t have to feel alone. Here, I want to deal with why I write and share from an emotional standpoint and why I have made the decisions I have.
My blog is fairly new, I have been trying to deal with the most recent crises and keep up with support through the various group pages, getting what I could off my mind and into words as much as I could, when I could. Then I found WordPress. I didn’t know if I would have anything to write, or if I could get it from my head to the keyboard coherently, but I set up an account and started to write the first thing on my mind. Wow, did everything start coming out! And the more I wrote, the more I thought about, and the more thankful I became to have found this outlet! If no one but me ever reads my thoughts, this is amazing therapy, rethinking what I’ve been through and how I worked through it, and in the process leaving a record that my two “typical” children could look back on when I’m not here anymore.
I began to feel the need to tell the world how wrong they are about Rachel and others like her, labelled and forgotten and assumed to be less than the rest of us, when I passed a group of kids playing basketball on the street a few months ago. They were between the ages of 10-14 maybe, they wouldn’t move off the road so I could get my car through, they left something lying in the middle of the road like an obstacle course when they did move, and they were yelling at each other while they were playing. Every other word out of their mouths was a swear word, curse word, these young children screaming the f-word and the sh-word like it was nothing. I got home and started thinking, I couldn’t get this out of my mind. These kids are the same as all the other kids in the neighborhood, and none of them would have ever thought to ask Rachel to play, or even said “hi” to her walking past. Like she didn’t exist, I HATE that!
Then I thought, why would I want her exposed to those children let alone associating with them??? Why do they spend so much energy and time trying to “train” my daughter like a puppy to fit into a society that doesn’t deserve her? I want to shout to the world “Look how much she has to teach you!” When other children throw clothes and things on the floor at the store I have to explain to her why they would do that while SHE is picking things up! When other kids use swear words I have to explain to her why. When kids ignore her or use the word “retarded” I have to explain why everyone is not as nice as her. And yet they train her to be what they term “appropriate!” She is taught not to make messes and not to swear and to always be nice, and she works 100 times harder to learn everything than other kids, yet no one asks the same from them! No one pays attention to them, no one corrects them, no one tells them to be nice to kids like Rachel, and no matter how much she learns, she is still invisible.
It’s sad, really, because Rachel is the only one who doesn’t do anything mean on purpose, she never would. She would never be a bigot, never hate anyone for any reason, never ignore anyone who needed someone to be nice to them. I understand the reasoning behind the training. It’s supposed to lead to a shot at independence and the ability to make some kind of living for themselves. But no matter how hard we train her and how frustrated we make her because it’s so difficult for her, independence will never happen. This, however, does not mean that Rachel does not count as a person, that she is a burden, or that she has nothing to contribute to society! I cannot justify training her to fit in when she is already better than most people in society in the first place! Rachel has so much to teach us! If we would train ourselves to be more like her than the other way around the world would be a much better place. I know that it won’t happen, but for one perfect girl I can make the world worth living in. I can let her know she’s loved for exactly who she is, and give her confidence by letting her explore in her own time and express herself and be herself, and letting her know that what she wonders about and dreams about and asks about and talks about matters. And I can let her do things that make her happy, even if we get stared at and don’t fit in. And I can tell her how special she is and why.
And I can write to let the world know how special she is too, and how much she has to teach them. If no one listens, at least Rachel and my other children will know.


2 thoughts on “My Reasons

  1. I do agree with you, Sandy. Our children are special and I hope that society will learn to catch up with them one day. Especially in terms of learning to be unconditionally loving, without judgement. You are doing a great job here for others in our situation.

  2. Thank you so much! I’ve said before, I truly believe that one of the blessings that comes in a situation like this is eventually having lived it enough to be able to be there for others on the journey! I try not to be TOO positive, because I have been at the lowest point too, more than once! But at this point in my life it’s the positive that is coming out on top! Thank you again, I love this outlet!

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