Amanda
was born with what was
described to me as immature muscles. She has always
been a bright, fun loving lil' Princess. When she
was very little my mom nicknamed her "Amanda Janie Cake's, miss baby pitch fit". Of
course the Amanda Jane stuck. She was milk intolerant
so needless to say there were many sleepless nights.
We
really started to notice that something wasn't quite right
around 6 months. We had finally convinced her Pediatrician,
there may be a concern. He scheduled an
appointment at Loma Linda, they had to cancel and
we were getting ready to relocate to a different state.
When we arrived in Grand Junction, Colorado, we
scheduled another appointment with a new Pediatrician, Dr.
John Pelner. He took one look at her and looked at
me and said " I think she has Cerebral Palsy". Wow! To
this day I have the utmost respect for him, he wasn't afraid,
and he had the consideration to be honest with me.
I want to thank him where ever he is now, for being an
inspiration in Amanda's and my life.
We
proceeded to our next steps, all those tests. The hardest
on for me was the chromosome testing. I couldn't stand
watching them stick that LONGGGGGG needle
in her. To make the beginning history short. The results
showed that Amanda had Bilateral Schizencephaly,
moderately severe spastic quadriplegia, Cerebral
Palsy, They also called her a "floppy baby and
that she had one side that actually was worse than
the other. My only thoughts then and now were making
her life the best that it could be and doing all
I could to make that happen. I loved her before her
disability and today I love her even more despite her
disability. Why? Because she isn't her disability. Amanda
is witty, funny, adventurous, loving, tender, intelligent,
beautiful, very social, and very, very sweet spirited
child. She expresses her mind in what ever way she
can and she doesn't stop until you get it.
One
of the things that they told us was that the intelligence
part of her brain was intact and functioning, they
of course wouldn't give a prognosis of how much she would
know or if mental retardation was a factor. I didn't care,
I still don't. I as a fellow human being do not feel that
is my right to decide. Especially when they say a special
needs child can't, that child usually will do exactly what
they have said they couldn't do. I believe that our
children grow as much as they do because of our determination
for them.
We
have had our ups and downs, but this is a statement
that many people have misunderstood. Those
ups and downs were never her. When you look
into those eyes and see that someone whom is full
of life and total understanding , it is frustrating when
someone else doesn't take the time to notice it too. Today
Amanda attends High School here in Selah Washington.
She has many friends that she likes going to
the mall with. She love being a young lady right down
to the perfume, fashions, nail polish and BOYS.
Her favorite color is purple. Her hobbies are
computers, going for walks, collecting trolls, angels
and Teddy Bears. Her favorite scent is Tea Rose.
She loves music. All kinds, she doesn't care. Especially Grammy's classical. She loves making people
laugh and with her contagious laughter it
doesn't take long to have a whole room laughing. She
loves children, the baby's really make her happy.
She has watched her 4 siblings grow up and
I have always thought of them as the babies she
may never have. I think that they too, have a very
special relationship with her. They get really upset
when someone babies Amanda. They comment "She doesn't
like being babied."
No
matter where she goes she brightens someone's life.
I don't think that they ever get her out of their mind,
she has such a powerful effect on every one
especially on this mom. She refuses to let me
be discouraged, When I am sad she starts that laughing
until I am laughing right beside her. If that
isn't intelligence and wisdom then I don't know
what it is except, love.
How's
Amanda in 2006???
 
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This
story is about Amanda the inspiration in my personal
life whom helped breathe the existence of life
into the support group now known as "Amanda's Friends". In the following months we
will
continue to have features on all the friends of Amanda's.
Your special angel deserves to have his/her
voice heard too. |
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