Mourning a loss

My sister passed away Saturday, September 19, 2009. She was 49 years old.

I was notified of her death by email and sat here stunned and detached. It took time for the sadness and sorrow to resonate deep within, and I am filled with indescribable emotion that seeps out of my pores and I wish there could be a flooding of tears instead, an expulsion if you will, that would be quick and complete and I could go on with my day.

I remember the morning she was born. 12:43am February 16, 1960. Kymberly Dawn McAlister. It was an unexpected pregnancy and initially it was thought to be some sort of abdominal tumor, but mom knew differently and refused work-up for such, insisting instead on "the rabbit test." She was a beautiful baby who was a living doll for her older sisters, age 10 and 12.

Kym was diagnosed with Huntington's Chorea 10 years ago after 5 or more years of symptoms that no one understood. She fought the disease like she fought everything her entire life, refusing to have reality interfere with what she wished. Her goal in life was to be on Opra as a living example of one who beat Huntingtons. One doesn't beat a genetic disease, one is consumed by gradual decay and loss of function, muscles loose elasticity and the ability to walk and even swallow is replaced by the memory of it having once been possible.

Kym's life was eventually limited to what she could observe from her bed, unable to be a participant, but she resisted and refused compassionate termination. When she was able to write she would begin the day with listing her "blessings." When she could talk, she would whisper disciplines to her 3 small children and when she could walk she would insist on being carried to her son's baseball game. Her fiery temper and outbursts were replaced with darting looks from expressive eyes.

Yes, I am experiencing profound sadness but more because of her life rather than death. And, I am in Germany, unable to get book a flight. I said good-bye to my sister a long time ago and I expressed my love, but today I feel the need to repeat myself.

Kym's legacy: Kate Elizabeth, 25; Anna 19; John 17; Emily 15.