2:04 p.m. - 2005-05-20
My personal role model
It's my day off from work...HA...Instead I had a dentist appointment, then I went grocery shopping, cleaned my house and am doing laundry. We are having company this weekend so I also had to dust and vacumn the guest room and try to get all the dust bunnies and cat hair removed.
The company is my sister in law and her husband. She is my husband's only sister. She is very special to me. I am the oldest of 4 girls and she is like MY big sister. I have always felt a closeness to her and now, at this time, she is even more special to me. She has Huntington's Disease. This is a muscular disease that weakens your muscles to the point that you shake a lot, you can't control your limbs, sometimes you go into a wheelchair and you lose your speech and finally your ability to swallow. It is hereditary. The maternal grandmother had it, and now most of her children have it. My mother in law had it too. Now my sister in law has it and one of the brothers had it along with ALS (Lou Gerig's Disease). He has been gone several years and was younger than my husband. If my husband doesn't get it; he could't have passed in on to our son. So far he is doing well. He could be checked for the gene but he prefers not to know as do his remaining brothers.
Back to my sister in law. She has her faults but there is something about her. She just brings light into the room with her. She sparkles. She is the poster child for the disease as far as I am concerned. She also had a stroke about 4 years ago and her speech has been affected. She is much more difficult to understand and talks more slowly now.
When she was first recovering from the stroke, she couldn't remember words but she would just laugh and said "what is that word I want and when I answered, she would say "YES, that's it" and laugh again. She doesn't live close to us but will be visiting a couple of days on her way to the East coast for one of her granddaughters' high school graduation.
It will be good to see her but it will be sad to see how much the disease has changed her. Of course, her husband is my favorite brother in law so it is always good to spend time with him. He is caring for her and trying to let her make as many of her own decisions as she can. He has a rough life now knowing the outcome will not be great.
She wants to travel and really wants to go to the Sherengheti (sp). they have walked the Great Wall in China, been to Russia, France and Iraq and so many other places during their marriage. I hope she gets to all the places she still wants to see.
Whenever I feel sorry for myself, I think of what she has to go through every day and how she keeps smiling and laughing knowing the day will come when she can't do what she wants, when she wants, by herself, with no assistance.
I Love You, "Big Sis".
