Stories of Lost Children
Empty Arms
by Nancy Smith, Kensington, CA, U.S.A.
We lost our daughter, Julie, June 20, 2001. She was born March 12, 1985, the second of our three children and the only girl. We didn't realize there were any problems until she was 4 months old and it took us another two years to find out she had Williams Syndrome. She had some retardation, but could read some, use a computer, and was a jokester. We never knew what she would do next. In August 1995 we noticed she was tiring out after even the smallest amount of exertion, and that she was not eating very well. Within the next 6 weeks she also started gaining weight even though she was eating so poorly, and she was unable to lie down to sleep due to breathing problems. We took her to 3 hospitals and saw 8 doctors in that 6 weeks and had uncounted test runs, but not one doctor could tell me what was happening. One said it was anorexia and told us to watch her diet and get her to eat healthier. We were barely able to get her to eat at all, and when we asked the doctor how she could be gaining weight without eating, she just dismissed it. Six weeks after she started getting sick, we finally got her admitted to the hospital and we were told she was dying. She had cardiomyopathy, along with congestive heart failure. We found out a transplant for her age and type of heart disease was around 95% effective, but then the doctor added she was not qualified. Due to her retardation, she would not receive a heart. Whe would die because of the numbers on an IQ test. They gave her only days to live; maybe a couple of months if we were lucky. She lived for almost 6 years; the last 4 she was unable to attend school and I stayed home with her. She started designing jewellery, and taking pictures of everyone and everything. She gave us much joy and taught us a new way to see things in a new way. To enjoy life each and every minute. She also showed that life is worth fighting for. Her dad, brothers and I will miss her every day of our lives, but we are thankful to have been a part of her life.
We are also trying to cope with the fact that had she not been retarded, she would have more than likely still be with us. I can not imagine how anyone could feel that a person is not worth a life simply because of a test.
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