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w March 03, 2009

Living In The Present

When Bean was born, we had about 24 hours of seemingly normal life before the maelstrom of doctors/specialists/social workers/testaftertestaftertest began. In some ways, I'm grateful that it did occur so soon after I had given birth, because I was so out of it that I remember kind of surfing the crest of the wave. Thinking about what was underneath it would come later, and it's a part of my life that I feel existed in a strange vacuum. I don't tell too many people the extent of the pain and guilt and fear and other completely irrational emotions any parent goes through upon the news of a disabled child - it was my bag, and Gene's, and we learned quickly that many people in fact did not want to hear it. I've since gotten over much of the bitterness I felt about that, and feel that I came out on the other side a much better person; not a better person for having a disabled child (more on that later), but simply for realizing no one owes you anything, and you have to just pass through it and retain hope that somewhere else, and with someone else, things will be different.

She is almost seven (13 days!), and for all the myriad and sustained challenges, her life has a fullness and dare I say, a normality, that I had finally given up on expecting about three years ago. I don't ascribe any one thing to getting us to where we now are, but suffice it to say, we are here, doing and experiencing things I had resigned myself to never seeing. Having a typically developing younger sibling has certainly shifted our family dynamic to the thoroughly average, and it has made a huge difference in all our attitudes and reactions - a wonderful difference.

I'm not writing this probably epic post to shill for sympathy. I never wanted peoples' sympathy or pity - I just wanted them to realize we had a child we loved dearly and would cut off our own arms for if need be, one who deserved and, I hope received, all of the things a 'normal' child gets by default. Some friends did understand that, and I remain eternally grateful to them. You got me through some very dark times, and I think you know who you are. Above all, I never wanted to be made to feel ashamed for Bean's very existence, or for my choice to take her into public, to expect people to see her as a child first and foremost, with no other labels. I didn't want to be told I was a saint, or that God had 'chosen' us for something magical and mystical. I wanted people to appreciate the fact that she had her own life and personality and quirks and capabilities and talents - not that she was solely the sum of her disabilities.

I have been reading many articles about the recent death of the eldest child of David and Samantha Cameron (he is the leader of the Conservative Party in Britain for those who are not as Anglophilic as I); he was six, and had both cerebral palsy and a particularly severe form of epilepsy called Otohara syndrome. Needless to say, two of those three descriptors could be applied to Bean. The Camerons were frequently vilified for 'exploiting' their poor, suffering, disabled child for political and sympathetic gain, though at the very least, I am not seeing any of that in the current media. It is heartening to read articles that attack this perspective, and point out that perhaps the Camerons were bucking a long trend of not just shunning disabled people, but literally hiding them away as best as possible, so as not to distress 'normal' citizens. He was their son, and they loved him, and they were simply living each day as it came. If the world didn't like it, the world could suck it (my words - I'm sure theirs are much more eloquent). I won't summarize all the articles, but I urge anyone who feels so inclined to go read at least one of the links below, because they speak to the experiences of so many of us who are just trying to...be.




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