Please watch this movie: http://bit.ly/9NHMwp
Its about a man who is 56 and lives with his brother. His father was involved in the local school athletics program and Shorty (Walter) became part of the routine. Water boy, towel man, coach etc.. The documentary follows him around. Some times he sounds like a normal mundane man but his attitude and his loyalty are inspiring. You can see in the people that talk about him - strong strapping young lads playing football, old coaches, his brother, his nieces and nephews - how much he adds to their lives in ways they just never thought about.
Its available on Amazon. The significance of his age is that the average down syndrome adult dies in their mid 50's (ie 55) so being 56 is statistically significant.
Friday, February 19, 2010
Wednesday, February 17, 2010
Rambling..
I tend to ramble and I hate editing. Makes it kind of hard to imagine me ever finishing any of my books. I did my autobiography in I think 1394 words a few months ago and I need to go back and edit it. Trying to be concise when my life is anything but is like stufffing Hulk Hogan into Twiggy.
This story of Angie and John is something I'm passionate about. There are blogs and books about little kids with autism and Down Syndrome. They are cute and cuddly. But adults - not so much. They are still so beautiful though. Like when you walk out of work on a freezing December night and the sky is that perfect midnight blue. They catch you by surprise.
One minute you're convinced your brother is devilspawn and the next his giggle dazzles you and you have tears welling up from deep inside because you didn't know he was still there.
It is absolutely crazy hard some days. But others, its effortless. My sister opens the door for the dogs so I don't have to get up and she claps with joy because I asked her to do something and she succeeded. She hugs me tight before she literally prances to bed and my mom and I sit in the living room, tears of laughter covering our face because she keeps turning the light on in her bedroom and the bathroom, going back and forth, drinking water from the faucet and murmuring to herself in her own language.
How do I take these conflicted, complicated human beings and bring them to life so people who have never touched or seen or been with someone with a disability can FEEL the beauty and joy that emanates from them and surrounds you?
This story of Angie and John is something I'm passionate about. There are blogs and books about little kids with autism and Down Syndrome. They are cute and cuddly. But adults - not so much. They are still so beautiful though. Like when you walk out of work on a freezing December night and the sky is that perfect midnight blue. They catch you by surprise.
One minute you're convinced your brother is devilspawn and the next his giggle dazzles you and you have tears welling up from deep inside because you didn't know he was still there.
It is absolutely crazy hard some days. But others, its effortless. My sister opens the door for the dogs so I don't have to get up and she claps with joy because I asked her to do something and she succeeded. She hugs me tight before she literally prances to bed and my mom and I sit in the living room, tears of laughter covering our face because she keeps turning the light on in her bedroom and the bathroom, going back and forth, drinking water from the faucet and murmuring to herself in her own language.
How do I take these conflicted, complicated human beings and bring them to life so people who have never touched or seen or been with someone with a disability can FEEL the beauty and joy that emanates from them and surrounds you?
Tuesday, February 9, 2010
Introduction #2
I'll caveat this by saying that I don't have regrets. I would not have wanted anything or anyone to be other than they were because I believe we have all come through our challenges as better, stronger, more loving and generous people.
This is not to say that I have never wished for a moment that my situation was different. To be forever responsible for your siblings - to have that responsibility drive your life choices is hard. It does give me purpose and the sense of being needed. There's no worry that my sister will move across country without me. There is worry that should I decide to ever go anywhere else, that I couldn't take her with me. That would be like losing a limb to me. I'm not fond of the town I live in. I much prefer Milwaukee, Madison or even Chicago. But this is where Angie, John and my mom are so this is where I am.
My sister in her worst moments smacks the dog, shouts in frustration and throws away papers we really wish she wouldn't throw away. My brother in his worst moments shits the bed, pinches so hard you get bruises and will nag you like a 3 year old for constant attention even if it means throwing the computer in your lap to the floor.
This is not fluffy bunny fun. I don't have any other siblings. I have cousins I am close to who have kids. But I won't have nieces or nephews, brother in laws or sister in laws. There's no one but me to take care of my mom and my siblings in their old age.
I deal with snotty caseworkers, brilliant doctors, stupid doctors and caring caseworkers. I know my siblings better than most but I always have to convince their new caretakers that I do before they listen. I'm a co-parent with my mom for my siblings and have been as long as I can remember.
To give me a chance at a different life, my mom placed Angie and John in a boarding school knowing she couldn't give them the best care when I was away. John has never been the same. Angie was different for a long time and she has come around after living at home and is a combination of our 'old Angie' and a grown up Angie. John seems more damaged and fragile. I carry that guilt - even knowing it was the right choice.
Being a parent or a sibling isn't easy for anyone. Each experience is unique. I cherish mine but the realist in me has to remember that sugar coating it makes the triumphs a little less sweet.
This is not to say that I have never wished for a moment that my situation was different. To be forever responsible for your siblings - to have that responsibility drive your life choices is hard. It does give me purpose and the sense of being needed. There's no worry that my sister will move across country without me. There is worry that should I decide to ever go anywhere else, that I couldn't take her with me. That would be like losing a limb to me. I'm not fond of the town I live in. I much prefer Milwaukee, Madison or even Chicago. But this is where Angie, John and my mom are so this is where I am.
My sister in her worst moments smacks the dog, shouts in frustration and throws away papers we really wish she wouldn't throw away. My brother in his worst moments shits the bed, pinches so hard you get bruises and will nag you like a 3 year old for constant attention even if it means throwing the computer in your lap to the floor.
This is not fluffy bunny fun. I don't have any other siblings. I have cousins I am close to who have kids. But I won't have nieces or nephews, brother in laws or sister in laws. There's no one but me to take care of my mom and my siblings in their old age.
I deal with snotty caseworkers, brilliant doctors, stupid doctors and caring caseworkers. I know my siblings better than most but I always have to convince their new caretakers that I do before they listen. I'm a co-parent with my mom for my siblings and have been as long as I can remember.
To give me a chance at a different life, my mom placed Angie and John in a boarding school knowing she couldn't give them the best care when I was away. John has never been the same. Angie was different for a long time and she has come around after living at home and is a combination of our 'old Angie' and a grown up Angie. John seems more damaged and fragile. I carry that guilt - even knowing it was the right choice.
Being a parent or a sibling isn't easy for anyone. Each experience is unique. I cherish mine but the realist in me has to remember that sugar coating it makes the triumphs a little less sweet.
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