Our
daughter, Taylor, was born with “special needs”. When she was first born, the pediatrician
told us there “may” be something wrong and it appeared that she had “low muscle
tone”.
How
could that be? We were both only 24
years old. My husband, David, was a
health freak, not eating sugar, caffeine or alcohol and going to the gym 5 days
a week. I followed every step of the
doctor’s advice. I ate what I was
supposed to, didn’t touch what I wasn’t supposed to and here we were, being
told our baby could have challenges.
After
exhaustive tests, we discovered that Taylor
had a rare (only 60 known cases in the world) chromosome disorder and no one
knew her future.
So
we were thrust into a world we barely knew existed. Taylor
was constantly sick and in the hospital with pneumonia. And when she wasn’t sick, she was in every
physical and occupational therapy program available.
Two
happy go lucky college sweethearts who never faced a serious challenge now were
forced to be ferocious advocates for their daughter, questioning every medical “expert” and their
latest attempt to help Taylor. We were
constantly told that we were doing the wrong thing, told our daughter could die
and “did we really want that to happen?”
Most times, when we felt Taylor
didn’t need something, we were right.
The few times the doctors did things we didn’t think she needed, she got
very ill.
We
were talked into a $15,000 wheelchair that Taylor was unable to use and we donated it
shortly after purchasing it. We were convinced to give her a vaccine which
landed her in the hospital for two weeks.
But
through all the trials, tears and frustrations, we learned a lot about life and
changed our views on a lot of things.
When
Taylor was
four, we started a charity called Bids for Kids. This was to benefit the
Children’s Therapy Department at Mary Bridge Children’s hospital in Tacoma Washington . This event has led to the raising of over $1
million dollars. Even though we moved
away in 2000, this event is still carried on by amazing group of women now The
Jean Cunningham Orthopedic Guild.
Over
the years we have had the support of many friends and family. My best friend
from college also a Pi Phi (Marylou Hill Ferry) has been with us along our
journey. Many of my sorority sisters
live in different states but I continue to keep in touch and keep them informed
of Taylor ’s
health.
Over
the years our path has been made by Taylor ,
she shows us the way and we meet people because of her. She has been our
teacher and it’s amazing the things you can learn from a child who can not walk
or speak. But if you are ever so lucky to meet her or any child with special
needs you will soon find out what I mean.
We
moved our family to California , although our
business remains in Washington , for Taylor ’s health and found
that the best thing for her was dry air and sunshine (and it wasn’t too bad for
the rest of the family either).
We
learned that there are many families in similar or worse circumstances all over
the country. And there are many people
and organizations that do wonderful things for this population.
I
learned that I can administer shots, medicines, tube feedings and all the other
techniques for taking care of Taylor
that were completely foreign to me when she was born.
And
we learned most of all, to trust our instincts when it comes to raising a
daughter with special needs. There is no
handbook and each parent must forge their own path. And to every parent that is given one of
these very special people, you DO have the strength and the knowledge to do
what’s right. People often say we’re
amazing for what we do with Taylor . We do simply what needs to be done, and if
faced with a similar situation, you could too.
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