Wednesday, December 12, 2007
54 years of love
We were eating lunch at a nice restaurant in Oneanta New York today and there was a whole group of leaders and kids from a school for the handicapped. There was a cute little girl - probably about 12 years old that was Downs and as I watched her I started to cry!! Ed looked at the tears quietly streaming down my face and said one word "Jill".
I said "yes".
It was amazing to me how in that few seconds I so deeply mourned my sister. For those of you who read this blog that don't know, I have an almost 54 year old (she will turn 54 in February) sister, named Jill, with Down's syndrome that is now in a nursing home suffering what is called Down's inhanced dementia. It is like Alzheimers only moving so much faster. My father and I starting noticing it less than a year ago. Dad and I started looking at a group home in March. By the time we got an okay from her State case worker, she was no longer capable to handle a group home. So we put her in the Beehive Home Assisted Living Center in July. She loved it and we thought we were set until they said - no, she has to go into a nursing home for 90 days first. So we put her in the Rocky Mountain Care Center in August, figuring that after 90 days we would move her back to the assisted living center after the 90 days. That 90 days is now up and she has digressed to the point that she wouldn't qualify for that level of care now. She NEEDS the nursing home. In July we were concerned about finding a place that would take a pet because she adored her cat, Molly - we made sure that she had a phone so she could call her best friends Andrea and Robyn. We insisted on a private room so she could live much like she always has, with her tv and puzzles. I don't think she has touched a puzzle in 60 days - she hasn't made a phone call in 90 days. She can't remember the names of her two best friends. She could care less about seeing Molly - she has a stuffed black and white cat on her bed that has replaced the real thing. She can't even play bingo by herself anymore - she will recognize a number ...but forgets immediately that she needs to cover up the numbers that she has got. She still remembers me and dad but is losing her memory of all the other family nieces and nephews and great nieces and great nephews. It will be interesting at Christmas time to see who she remembers and who she doesn't. She realizes that she should know someone but just can't remember why.
I was six and a half years old when Jill was born. We had just barely moved to Kaysville in January of 1954 - mom and dad had no idea that there were any problems until Jill was born. Jill only weighed 4 pounds 11 ounces and the doctors immediately knew there was a problem. In 'those days' Downs was something to be ashamed of and the doctors told mom and dad that they should not even take Jill home from the hospital but put her in the state hospital in Utah County. Mom and Dad refused. They told the doctors that this was their baby and they were going to take her home and love her. The doctors even argued with that, saying that because of her disabilities, her older sisters would never marry!! People would shun our family.
I don't remember any of this argument. I do remember grandma Viola coming and staying with Merrilee and Bruce and I while mom was in the hospital. I would imagine she stayed longer than that so mom and dad could run back and forth to the Dee Hospital in Ogden for the month that Jill had to stay until she weighed enough to be able to come home. I have always lived in my own little world and I guess this was no exception - I simply remember having to be really really careful with this newest sister. I loved grandma Viola and am forever thankful for that special time with her as she died less than nine months later at a young age of 54 of a ruptured appendix.
Growing up with Jill was a joyful experience. Anyone that has been around Downs finds an overwhelming abundance of love. Jill was no exception. She added so much love and sweetness to our whole family. We cannot begin to pick out where she influenced us and how she helped us except to know that we were blessed to have her.
I can remember when she was about eight years old she decided we needed to bless the food before we ate it. My parents were not active in the church at all at this time - mom would send us kids to church and my folks would attend maybe at Easter and Christmas. So having a prayer over our food was totally unknown. Jill changed that!! This little girl, who loved to eat, would sit at her place and not eat anything until we finally would realize that she was waiting for us to bless the food. And so, slowly but surely, our whole family got in the habit of praying at each and every meal...if we didn't, Jill just plain wouldn't eat! She started a spirituality in our family that was badly needed.
Jill was fun to grow up with - always happy, she loved her dollies and she loved the bouncy horsey that she and Kelly (my brother who was four years younger than Jill) got for Christmas the year he was 2 1/2. I can remember her running over to the horsey and pulling Kelly off so she could ride it again and again. Amazingly enough, Kelly would let her. He was the perfect brother for her - endless patience!
Jill had her own language until Kelly learned to talk - then as he learned the correct words so did she - up until then she managed with words like I-I for icecream, and O-O for popcorn and Be-ba-ka for peanut butter - Merrilee and I were sisters - bahja!! Where that word came from I have no idea. Even after she learned to speak correctly it was difficult for people outside our family to understand. One of the signs of Downs Syndrome is an overlarge tongue for the mouth and so it made it hard to understand her. We did pretty good with her - other people would just love her.
Jill and I shared a room and a bed for a number of years - until I went away to college. I was allowed to ride the bus to the High School when I was in Jr High so that I could accompany Jill to where her bus would pick her up to go to Monte Vista in Farmington. I would then walk from the High School to the Jr High for my own classes and then return to the High School immediately after school to meet Jill and ride the bus back to Burton Elementary every day. I always felt I was closer to Jill than my other siblings because of this. However, when I grew up I went away to college and got married and Jill continued on with the family as our special girl.
I have been blessed to have Jill for a sister. Her willingness to love anyone and her total lack of guile was always amazing to me. She didn't cheat or lie or make snide comments. She abhorred any argumentiveness which caused her to break out in tears. Let me tell you - that stopped a lot of fights between Merrilee and I who were 18 months apart age wise and very prone to arguing.
For years my mom felt that Jill had been sent to our family as a test. And then one day a wonderful sister in the ward told mom that the Lord would not have sent Jill to a mother that may not love her or understand her - but rather that the Lord KNEW my parents had the strength of soul to love and teach and guide and provide for one of his special spirits with all of their heart.
I am glad that mom didn't have to watch the loss of our Jill here on earth. It has been sad to lose the sparkle and glow that was Jill. She is now a shell of what she used to be. But she still radiates love. The people at Rocky Mountain love and watch out for her. She still has to have her hugs from everyone. And she still cares very much that Jesus Loves Her!!
I am excited to meet Jill again on the other side of the veil when she is whole and beautiful. I know her soul will not of have changed but I look forward to meeting her true self - with all the intelligence and beauty of a special child of God - this time without the disabilities.