Greetings All,
Sorry, I have been unavailable - due to the storm and the fact
my
office is moving ang they have taken down the servers, I have haven't
had
the ability to post. And thru a snafu - we may not have e-mail or other
Internet capiabilities for upt 3 weeks - so I signed on with my home
e-mail.
This means I won't be available much, since I will either be at one job
or
the other.
Well, we certainly heard from all the disgruntled kids about
their
parents and their feelings.
Now, you get to hear from a team - me and Amber. Amber and I had some
time
together to just talk and snuggle. And I told her what had been and ask
her
some questions.
To recap about child - my daughter is 12 about 6 weeks shy of 13, and a
Right
Hemi - the result of being 8.5 weeks premature and having a stroke along
with a number other She has been in therapy since I realized there was
something wrong when she attempted to crawl and took a nose dive. She
was
placed in an early intervention program and began receiving PT, OT and
Speech at a Center for Special Needs kids. At 22 months they placed her
in
their classroom phase. Boy, was I not ready for refrigerator art and
sitting
in chairs that had my chin resting on my knees!! Since her father and I
worked - it made for a pretty fragmented day for my baby. She was taken
over
to my mothers around 6:30 - fed breakfast and taken to the Center from 9
till 12. Then she came back to grandma's for lunch and a nap. After her
nap
around 3 we picked her up and went home. Where we did dinner, a bit of
playtime, bath and bed - to do it all over again the next day. At 3.5 -
she
graduated from this program becasue - they felt she was being hindered
cognitively by surroundings. Kids she could play with where MR and the
kids
she could interact with where basically immobile. She was placed in an
experimental program George Washington University Hospital Center was
running - teaching private schools to mainstream. She also began the
E-stim
assissted PT twice a week at this point thru a private therapist. So,
every
Tuesday and Thursday - she was picked up at noon and taken to the
therapist.
This continued right up thru the end of 6th grade. She had one surgery
at
4.5 - which enabled her speak. It was one I had been putting off, and
frankly hoping therapy would avoid. It had only a bit to do with the ZCp
and
a lot to do with the fact her tongue was attached to close to the end.
The
combination of the two made speech very hard for her. The tongue thing I
think she inherited from me. I have been told - I should not be able to
speak clearly due to this same thing. I guess since I never knew - it
never
stopped me!! They still want to do the surgery on me. I point out I talk
fine and I am used to the fact my tongue hurts when I talk a whole bunch
or
eat. The e-stim assissted PT - she had for 8 years - reversed the much
of
the paralysis, and atrophing, and eliminated the need for the tendon
cutting
surgeries. I dreaded these for her becasue they would have been done
both to
her arm as well as her leg. And would have needed to be done several
times.
I had no idea at the time this would be the outcome - I just took a
gamble.
No garuntee here. It worked!!
It is impossible for a non-parent to understand how a parent feels
about
their child. We love these little critters, and in the beginning they
are
whole dependent on us and the decisions we make. We want the world for
them.
How do I explain the pain and shock - when they tell your child will be
wheechair bound, unable to express her self and perhaps mental impaired.
Imagine if you will - your beloved parent or spouse being in an accident
and
being handed this prognosis. You would be in such state of shock and
grief -
that would last for a long time. And if you where in the position of
also
having to make the decision as to their care - you would suddenly be
plunged
into a whole you have little knowledge of, yet need to make major - life
affecting decisions. You would feel so helpless - you would rather have
this
happen to you then to them. And you fight it - tooth and nail. It's not
about making someone prefect - its about giving them the best chance at
life. Your entire whole suddenly shrinks to taking care of this
individual.
People react differently - I got mad. Not my child, Not on my watch. You
wonder what you could have done differently and you feel guilty. I
couldn't
believe that only beautiful and perfect thing in my life - was going to
have
such hurdles. I wanted her to have the life I could never have - the
one
that taken away the first time my mom gave me away because she didn't
want
me - the was destroyed the first time my father decided to rape me as a
child, the one was filled with so much fear of people - their violence,
anger and complete unpredictablity. I wanted her to be free to live in
the
sunshine - not hide in the shadows like her mother. When the lady at the
church told me - God did this becasue I was bad person - I knew what she
meant - Hadn't my parents - not wanted me, hadn't I always been a
horrible
burden to them, hadn't they reminded me often how stupid I was perhaps
retarded, had I not done things as a throwaway to survive that good
people
would never do - dance topless and jack guys off in massage parlours
becasue
I had no idea how to survive once I was thrown out. Had I not had 2
divorce
at that from men who had beaten me into bloody pulp on the floor and let
me
know what a stupid idiot was. I knew I was filth and that no good person
would have me. Somewhere I dredged up the fury to reject what she
saying.
The Light wouldn't do this. I will never be good enough for people but
Amber
need never feel this way - I would take on all the demons in hell - if
that's what it took. Scared out my mind I would hurt my child - I dumped
myself in therapy only to be told there was nothing wrong with me. There
was
something terrible wrong with the people in my life. You know I never
associated the fact my parents started drinking at 4pm everyday with
them
being alcoholics. I knew my dad beat me - the scars from the buckle end
of
the belt are a powerful reminder of the violence as are the memories of
screaming for help and mercy. I didn't associate what my mother did
breaking
wooden spoons on me with abuse. I learned a whole lot. I learned the
fact I
am alive and sane is testimony to the strength of human spirit and
survival
will and that most peope like me are either drug addicts, alcoholics, in
insane asylums or in burial plots. I reduced the social workers,
psychologists to tears and shock. I learned that I am incredibly strong,
and
that altho I will not fight for myself - I will not quit fighting for
Amber.
The most important thing I learned - was I could love. I thought all the
ability to feel had been degraded out of me, and when I realized I
loved
her - I didn't like - it hurt. I am sure if she could remember she might
wonder why her patting my face with her little hand made me cry. How
could
she understand for the first time - I had bonded to another human. How
could
let anything harm this little creature - how could not do whatever it
took
to give her a real life. This meant some tough decisions - and seeing as
her
father couldn't face this - and my parents rfused to accpet it - I was
the
whole ball of wax. I researched and I read and I thought. I realized
part of
what was the problem becasue she was a child and growing - each phase of
growth was hindered by the lack of brain cells to control those areas,
and
without some form of help - they would simple shrivel and tighten up and
creat additional problems. I sought out the means to minimze this. I was
handed what was the coup-de-grace when her father abandoned us, I was
laid
off and my parents threw us out of our home and turned their backs on
us.
This wouldn't have been a big deal just for me - but how was I going to
care
for Amber? Well, I found a way. Probably not the best way but a way.
Amber -
Blessed Be - seemed to survived this relatively unscathed. I don't want
Amber to be perfect - just the best she can be. Amber walks, Amber talks
and
Amber is in Gifted/talented with her 135 IQ - becasue I did not accept
limitations for her when she couldn't yet make the decisions on
limitations
herself. And she is pretty super!! A kind gentle soul who thinks of
others -
shares and cares!! She has lots of friends and in gym class the others
want
her to teach them to run the mile in 9 minutes. We are facing a surgery
question now. The running is causing her pain - the doctor had mentioned
4
years ago - her hip dislocating and she wanted to surgery then and I was
not
convinced and checked with therapist and she said she could see no
problem
at that point. When Amber and I where talking about it - she said if she
never ran again could we skip the surgery? I don't know - however she
decided if the surgery meant she could run - then she wanted to have the
surgery.
Now on to what Amber and I talked about.
Me: Do you resent the fact you missed so much schooll becasue of
the
thearpy?
Amber: No she thought it was great - she got to miss school, of
course it was a bummmer missing assembles. She liked going to therapy.
It
kept her looserso she could more. She wishes she could have therapy now,
but
she thinks at the middle school level becasue it would mean missing
classes - it should be after school. But at elementary level that wasn't
a
problem.
Me: Do you think this affected your ability to make friends?
Amber: What that got to do with making friends? Either you can
make
friends or you can't.
Me: Did you resent the being pulled out of class by the Special
teacher.
Amber: No, it was perfectly fine. The lady helped her.
Me: How do you feel about handicapped.
Amber: It sucks butt!! It means she drags her foot and trips.
That's
embrassing!! Her hand does funny stuff and she gets tired. She wishes it
was
different but accepts it.
She wants me to tell you guys that complained about your parents
and
what they tried to do and did for you - You are being stupid people.
Then
she wanted to know if you where smart people or just regular people.
That if
if your regular people you are being ignorant and that not bad it just
means
you don't understand. They where trying to help you and you are being
stupid, stupid people.
Okay, there are two seperate views. Maybe you guys can expand
your
thought processes away from from just you and how you feel and consider
how
others. This is after all not just something that happened to you but
something that happened to your whole family and they all have thoughts
and
feelings to. Its not just your right to be angry about what happened -
they
have feelings, too. Perhaps you should display some compassion to them
Brightest Blessings
Trisha
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