My youngest sister died after a long battle with Huntington's disease. She was 48 years old. It was something we knew would happen. In fact, every time I saw her for the past 10 years, I felt I was saying goodbye. This time it was real. I flew to Las Vegas last night for a memorial service today.
On the cab ride in, my driver was a young Jamaican woman who asked if I was in town for business. No, I said, a funeral. Questions pursued. Who, how, when. Too many questions. I was tired. It was late. I tried answering with short answers, indicating I didn’t really feel like divulging information or going into detail about this event. Didn’t my sister have a house (meaning why was I going to a hotel); were my parents coming (no, they are dead – I tried saying deceased but she thought I said diseased). Finally, I said, No, it’s just me. No one else. And without pausing or thinking, she asked if I would like for her to go with me. No one should have to do this alone she said. I felt like crying. Her care and concern was so genuine.
Emily, 16 years old and the youngest of four children, told me it was hard to look at me sometimes, I reminded her so much of her mom. She, who has Kym’s skin and smile and teeth and quick looks and big laugh. It was as if she was Kym young and I was Kym if Kym had lived without Huntington's.
The kids shared simple memories, nothing unusual, nothing startling, just memories that let other people know that at one time their mom had been just like any other mom. Emily wanted to tell everyone about the time they drove through Wendy’s and her mom rolled the window up on Anna’s head. John told about her painting the girls’ fingernails and then because he didn’t have anything to do, she’d paint his clear. They remembered their mom with red fingernails and red lipstick. And when Emily tried to wear red lipstick, her mom told her that red was for ladies. She couldn’t wait to grow up and paint her fingernails red.
Anna was the first born who ended up giving up her childhood to be a 9 year-old caregiver. Anna takes charge now. Anna put together the pictorial life of her mom. Anna designed the tombstone and helped with the service arrangements. Anna had to sign off on things, pick up the pieces, be sure the DVD worked. And Anna’s boyfriend wasn’t there because he’s black and her dad wants nothing to do with him.
John was the only one who spoke at the service other than his dad. John wanted to tell everyone that his mommy was a good mom. That even though she wasn’t a regular mom, she was stubborn enough to hang on so she could see her kids be able to survive on their own. From her he learned that there is good and optimism in every part of life, even if it’s not like everyone else’s life.
In the Phoenix airport waiting at gate C19, a trio of women with voices like angels are singing Precious Lord take my hand, lead me home. I hear it and wonder if I'm really hearing it. I can barely hear them, I can't find them, I'm actually wondering if this is really happening. Then I spot them, they are real. Their harmony is such a sweet blended sound. One plays a guitar. Then they sing I'll Fly Away. It's surreal. I move to be within better hearing distance. By that time, they'd moved on to Get Your Kicks on Route 66.
Lenny was at the funeral. He was with Kym when she died, holding her hand, talking to her the way he did every night. Them having their one-sided conversation so she could relax enough to go to sleep. This time, I guess one would be correct in saying he talked her to death. She relaxed, went to sleep and that was that. He said she was his life. He said she saved his life. He always called her Pretty Lady and took her flowers every week, just so he could see her eyes light up and hear her delight. Even as he approached the coffin displaying her skeletal frame, he greeted her with “Hi there Pretty Lady.” There are times I've often said it's too bad Kym and Lenny didn't find each other when they were healthy, but really, I believe they found each other when it mattered. I remember her telling me she was his eyes and he was her feet. He was legally blind and had MS but could get around by himself, whereas she couldn't. He helped her with her walking, telling her how to concentrate and where to look. I remember one visit when she was so proud of her walk. We went out to the courtyard of the apartment complex and she would say, “Watch me walk” and off she'd go. Over and over. So proud of her accomplishment. When we sat down afterwards, inside on the sofa, she leaned over on my shoulder and slept like a baby. Proud, content and worn out.
When I last visited, on her birthday this year in February, I took her roses. Her caregiver told me today that that birthday visit meant so much to Kym. They had to keep the roses until they just fell apart, she wouldn't let them throw them away. It reminded me of a birthday cake I made her when she was about 5. It was a rabbit cake, one where a circle is the head and the other circle is cut so that ears are made out of the edges and the middle is cut into paws. I iced it in fluffy seven minute frosting with lots of coconut. Kym loved that cake so much she wouldn't let us cut it. We ended up throwing it away, uncut and hard as a rock a week or so later.
So many times I've said Kym lived a tragic life, and guaranteed, she did have her hardships. But today, I did not feel the tragedy of her life, I felt the love. I felt the joy. I felt the optimism that inhabited her and that kept her going. May she rest in peace and dance with the gods.