Tuesday, January 28, 2003

My aunt has Down's Syndrome and paranoid schizophrenia. She has lived with my grandma for years. The two of them alternately take care of each other and drive each other crazy. Today my aunt is moving into a group home. Not because there is an immediate need, but because we don't know how much longer Grandma will be able to live independently. Patsy needed to be settled in a comfortable, safe environment before the inevitable happened. In the past few weeks, men have been packing her things and moving her furniture. She is excited.

Grandma, on the other hand, is scared. Despite her knowledge that this is the best for Patsy and her protests that she will be just fine, she knows that this is the beginning of the end. Without the presence of another person, she may soon succumb to her fears and her confusion. She may lose the last bit of independence she has - her little house by the park.

My grandma will be 84 this July. She was the first Caucasian child to be born in a tiny town in Alaska. An only child, she grew up fiercely independent. In an era when women became housewives and mothers as soon as possible, she didn't marry until her mid 30's and didn't have her first child until her early 40's. She moved from place to place, following Grandpa's government job, for years. She made friends with her natural gift for conversation. She made enemies with her willingness to stand up and vigerously fight what she perceived as wrongs.

One of the things she fought for most vigerously was rights and benefits for people with disabilities. As a child, I was always impressed by the wall of plaques and awards that she had aquired through her various projects and committees. She listened to the doctor tell her that her oldest daughter should be sent away because of her extra 21st chromosome and realized that he was a fool. Because of her strength, my aunt has been able to experience friendship and love. She has had a job and her own apartment. All because Grandma looked the doctor in the eye and recognized his expertise for what it really was - fear and ignorance. She was so strong.

As I write this, I have tears on my cheeks. When I was younger I always knew that I would be the one to help Grandma when she got older. I had it all planned out. I would finish college and move back to my hometown. Eventually, Grandma would need someone to stay with her and that someone would obviously be me. I would teach during the day and in the evenings Grandma and I would make dinner together and talk about the things she had seen and learned throughout her lifetime. I would be there to make sure she didn't lose her independence.

Of course, nothing went as planned. Instead of moving back home, I headed to California. Instead of being the spinster teacher I imagined, I got married. When it became obvious that she was ready for my help...I couldn't give it to her. Although I know that she never expected me to follow through on these plans (I don't think she ever even knew about them) I still feel as though I have let her down somehow.

Grandma was there when I was born. We formed a bond in those first few days, as she held me close and welcomed me to the world, that has never faltered. She has cheered me on through high school, college, job hunts and wedding plans. She bought me my first car (starting a tradition, whether that was her plan or not!), "loaned" me money when I needed it and taught me to harness my inner strength.

These days I talk to her every Sunday at noon. We don't talk about anything exciting - usually the family and her health and her cat, Spike. But that isn't why I call. I call because I don't know how many Sundays she has left. I call because I want to be there for her the way she was there for me. I call because she's Grandma and I love her. What more reason could I possibly need?

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