This post is coming a day late, and it may be a dollar short, but I really had to decide whether or not to write something on this topic. After having some extra special experiences because of my niece, McKenna, I wasn't sure whether or not to write this post.
Julie's Hump Day Hmm topic yesterday was: share your thoughts about a case of some medical or other situation that deviated from the "norm." What do you think about the drive to fix? Do all conditions and situations need fixing? Or do we societally need to consider our need to control, master and manage, and instead spend some time, sometimes, learning how to deal? Or...are those mutually exclusive?
I think that there are times when we have medical conditions that, if fixed, would greatly improve the quality of life for the person with the condition. My dad had a triple bypass for his heart, and right now, he's in the hospital having chemo treatment number three because of lymphoma. It can be fixed, and he is old enough to make the choice for himself.
However, I think that the world needs people like McKenna, too. Her spirit was so pure. McKenna was able to teach me things, without ever speaking to me, that I could not have learned from a person who walks and talks and makes mistakes. McKenna taught me the true meaning of love. Sometimes we think of love in terms of what we can do for other people or what they can do for us. "If you love me, you'll" is a phrase commonly heard in society. And the sad thing is that people believe it. In reality, love is a feeling we feel for others, and so we do things that we think will make them happy because, in loving, we want other people to be happy. Whenever I walked into my sister's house, I could automatically feel McKenna's love. If I was sad or heartsick about something, I just needed to go sit by McKenna and all of a sudden I KNEW I was loved and calm just filled me from the inside out. Those talents, I believe, were given to McKenna in place of other talents that other people have. It might have been beautiful if we could have fixed her, but in reality, we would have given up so much more, and since she couldn't choose herself, we can't know what she would have given up, maybe grudgingly, to be able to do things that most other children can do.
I love McKenna, and I'm so glad that she's happy now. And now that she's rid of her earthly body, she still has all of the beautiful talents that she gained here, but her spirit is now free to run, jump and dance. She now gets the best of both worlds.
In the end, a boy with autism, or a girl like McKenna both have the talents they have, and they are who they are partly because of the other problems they have. Some of us have problems that don't show so well on the outside, but those problems make us who we are too. Would we give up the knowledge we gain through experience just to get rid of the problems? I wouldn't.
5 comments:
Beautiful! I agree 100%. I haven't always thought that way, but now I have Ethan, and I can't imagine it any other way. Thanks.
McKenna certainly helped me appreciate the perspective you're talking about. I don't think I ever advocated gene manipulation to make perfect children (that wouldn't have helped McKenna anyway), but I certainly was more accepting of medical science making life "better" before I knew McKenna. I have known enough autistic people and down syndrome people that are much better people than many of the employees I meet at a typical Walmart (to say nothing of the people who work customer support of phone companies). So which is "better"? It's thankfully not my place to decide.
I don't like the concept of "custom designing" and "perfecting." If it begins, though, it will spiral and go viral b/c of "keep up" mentality. I hope it simply does not begin.
Once someone is here, if there is something to do to ease pain or improve quality of life, in general, I tend to think we should take it, such as bypass surgery. Or my friend doing therapy for her autistic son.
But if there isn't something to do, looking for the gifts and blessings, yes, I agree with what you say.
Because of your experience, I know this was tough, but because of your experience, I am glad you did write.
Thank you for posting this Ellie, I really needed this. I cant explain it anymore then that. You really helped me out today. Thank You! I am sorry to hear about your dad...I hope he's ok
This was a beautiful post and McKenna sounds like a beautiful child. She wouldn't have been the same if people tried to "fix" her.
I’m a week late for the Hmm, but check out my post here:
http://www.mommybytes.com/2008/07/autism-revealed.html
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