Tuesday, September 13, 2011

A Forum Post

Gasp! a blog post! 
This is from me, on a forum. I think if you read it you don't really need more context than that. Just saving it for posterity, thought you might like it.

I understand what and how you are saying it, Oxy, but you are assuming that everyone sees this world the way you do. They do not.
It does no one any good to wish that Emma was anything other than what she is. I, of course, would welcome any treatment that would improve her cognition and abilities, but it would not change who Emma is.
There is nothing special about DS nor autism. Every child is a blessing. Yes.
The blessings are where you find them. I would hope that you could believe that many of the most contented moments of my day revolve around just being with Emma - pure love, pure fun, holds me in her arms like no one else can. I look for those moments, and savor them when they are here. In many ways, including the support I receive here and see others get, she has done more for my faith in our species than anything else. That is backward - she's a 'defective' copy, and yet she displays her humanity in ways that the rest of us inhibit to the point of self-destruction. To miss that message, in my opinion, is to miss a fundamental aspect of what it means to be human - across the spectrum of humanity. Overcoming suffering - in all of it's forms - physical and mental, from within and without - is a component in just about everyone's life, at some point. I am not saying that I am any good at it, I'm doing the best that I can, but this is another thing that has been brought into sharp focus for me through Emma's existence.
Some get way more suffering than others, some are destroyed by little, some (I have some personal heroes here) amaze me with their resiliency and personal resources. I can learn from them, but I cannot be them, I must find my own path. I can certainly appreciate and applaud others' ways of overcoming. I don't agree completely with Viktor Frankl, but what a story of succeeding through the most horrible suffering imaginable.
I put the whole "blessing" thing into the same basket with "all DS kids are happy." It is a very poor reflection of the whole picture. But blessings are there, and they are available.
I cannot follow the thought that I was somehow chosen to have Emma; the implications take me to a place that is completely theologically untenable to me. I won't know the answer to that until after I die.
I've shared the 'revelation' that I once, very grief stricken, had the thought that Emma would be made 'perfect' in heaven. I almost immediately had two thoughts: 1) How would I recognize her, then 2) how would she recognize ME? How imperfect am I?
I'm not attacking you, Oxy. I'm still angry at DS, pretty sure that I always will be. My desire is that you can find your way to see what these folks here have learned, for them, to find meaning for yourself. I'm still working on it, too.