Happy Mother's Day !
I
was born the 3rd daughter of six children. I had two younger brothers and a
younger sister, Lori, who was born with Down's Syndrome the summer after I
graduated high school. Mother only lived another 3 years.
I
had to fight my older sisters for the privilege of raising Lori. They wanted
her admitted to an institution. We had a cousin who went to an institution and did
not live a year beyond the day he entered it. I fought hard.
We
took 'the family' to court three times in order to provide sufficient support and achieve legal guardianship of her. The elder sister once made a comment that 'with all of Lori's problems, she could always go on welfare.'
We
were told Lori would not live past the age of 10 - 13. Typical of Down's her
tongue was large, she had a partial hearing loss, and when her permanent teeth emerged,
she had two rows of teeth on the upper part of her mouth. Which meant she
had trouble speaking and at one point gave up trying to speak. When she was 8, she was diagnosed with kidney
disease: hydro-nephrosis, meaning her urine flowed both ways. If her bladder
was full, it back flowed into her kidneys and stretched them beyond their
capacity to function. The right kidney could not be saved, but with multiple
surgeries, the left kidney and her bladder were repaired. The kidney disease
slowed her physical growth, which was a blessing because she appeared younger
than her chronological age, making her appear more 'normal' to other playmates.
The
difficulties of verbal communication required me to observe her body and mood
'language.' At some point, we had to insist Lori tell us her needs before
meeting them to instill in her the desire to make herself understood. Even so,
she was very stoic, rarely complained and I had to be very watchful to be able
to anticipate her wishes.
My
mission in life was to take Lori as far as she could go until the goal
became her ability to function as an independent adult. We succeeded. She graduated high school and held
a job. She went to the prom and had fun on her own four-wheeler. She loved
music, rocking in her chair, and swinging in the yard swing. She learned to
read all the 'danger words' and music labels of her favorite country-western
singers. Her sing-alongs left much to be desired.
She
read her Bible with her hands - similar to a braille reading, but with a regular
Bible, literally wearing out 3 Bibles over the years. It always fascinated me
that she was evidently getting something out of those printed pages, or she
would not have been so devoted to the practice. When she was hospitalized for
the last time, I asked her if she had talked to God lately. 'Yes,' she said.
'Oh yeah? What'd He say,' says I. Her answer: 'I'm going to heaven.'
She
taught our whole family so much, being the eldest of our 5 children. Lori died
at age 27 from leukemia.
Her
mission of teaching me and all who knew her, pure love, had been accomplished.
I suffered brain damage and PTSD after the sudden death of my youngest daughter. Eventually, I had to choose to vegetate or recover. Thanks to the experience of teaching Lori, I had some ideas as to how to work on my own recovery. It has been seven years and I am still learning to read again. At 77, I am the oldest seven-year-old that I know. I had a good brain and still do. Although I lost so much, there also remained so much to work with. I have always been a consummate problem solver, and still am. So much came so easily to me, that I took it for granted. I was an illustrator, pattern/product designer, non-fiction author, an accountant/auditor. Now I can forget something in a matter of minutes and must give myself lists and illustrations. Progress is slow, but it is progress, not perfection.
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