Personal Stories and Inspiration
We have been collecting stories and photos from our member families and have a few to share with you.
Would you like to share your story with us? Please contact us.
Kristen lives on in the hearts and minds of those who loved her because she had a magic way of enticing people to become part of her world which shrunk to her home as time went by but was full of love with family and friends who kept her company. We loved reading her moods by watching her beautiful blue eyes examining the innermost thoughts of our souls. Her smile made our day and her sense of humour was amazing.
When Kristen was about 21 months she started to drop her ice cream – she adored ice cream so we were rather worried. She lost her words she had been using and became very agitated and restless. Looking back I feel she was deeply depressed by the inability to use her hands. She had been a perfectionist putting things back in the cupboard in an orderly way if her Mother had been in a hurry.
We went on a search over the years to understand what may be happening to her. On that journey we travelled with a lot of people who suffer from bodies that no longer obey their wishes. When we went to live in Washington, a group of outstanding specialists studied her for several days. We were told she had a degenerative disorder of an unknown nature, but with the rate of progression she would probably live until she was ten.
The diagnosis changed our lives. We fought to get her to attend school, which she disliked, and we allowed her to walk for miles each day to keep her legs strong and to go to Art Galleries and museums, which she loved. Kristen’s favourite painting was Rembrandt’s Mill at the National Gallery in Washington – the day we left it had been taken away and she was furious. When we went back to her doctor three years later it was back on the wall and she laughed with delight.
Dr Rett said the girls’ eyes were so bright he was fascinated to know how much they knew. We look forward to testing eye pointing with computers one day.
Later as her seizures became worse we worried how she would react to not being able to go outside to enjoy nature, which had always meant so much to her. I remember when she saw the Franz Joseph Glacier she cried as she thought it was so beautiful. Somehow, she was so tired she found pleasure with being read to and watching TV and her favourite videos with the Three Tenors singing and Nureyev dancing. We learnt the human body has great powers of adjustment and waking up to see what is happening today makes one treasure each day as a gift.
After she died, Dr Beeby who was one of New Zealand’s great educationalists consoled us writing to say, “To love and be loved is the most important gift in life.”