"The fascination with perfection lives on in the human mind."

Greetings Elaine,

Welcome.  My tendency has been to jump right in with a two-by-four, then try
to pick up the body parts and mend hurt feelings after the carnage.  I
hesitated to post after your introduction because I initially felt outraged
by your statement.  I didn't want to react with anger (well not too much).
But I also felt surprising empathy and sympathy for your need to make
significant decisions regarding your children's health and well being.
Since I do not have a full perspective about you, your doctors, your
children's abilities and disabilities, nor the responsibility and authority
to make the decision, I've been additionally reluctant and wary about
addressing parent/child matters.  Besides, as Jan noted about your second, I
sensed from your first post that your decision was made and that you were
seeking support, if not approval.

Still I felt the need to speak out as a CP who's been beneficiary and victim
and fortunate escapee of other's need to fix me and make me better.  I've
been elected enough times and been presented through fifty-eight years of
survival ample episodes on this side of the "knife" to speak with some
authority and experience.

I instinctively side with your daughter's "No!"  For one so young she
exhibits proper regard for her well being and authenticity.  She already
knows herself distinct from your intentions.  I assume she articulates
proper concern and probably fear.

What I think we, certainly I, want you to know, is that we with CP each have
a lifetime of dealing with acceptance, embarrassment, self sufficiency, and
independence regardless of our approximation of or deviation from the
"norm".  No healthy, self-actualizing adult capable of being responsible for
his/her life will ever waste energy and empowerment by blaming parents for
current conditions.   That does not mean we don't carry the hurts and scars
of efforts and interventions, the successful and the failed.

I am aware that you comprise another generation of womanhood than say my
mother born 1917 and having to leave high school to find work to help
support her parents and sister during the Great Depression.   It's not quite
an accurate and fair comparison, her with me to you and your children, nor
the ways I've come to regard and adjust the world likely to fit your
daughter's outlook and life.

I am speaking primarily from the weaker and pained part of my self that ever
struggles with the scope and ignominy of my disablement and has to endure
the tendency of others and myself to overcompensate.  I accept the drive and
desire for normalcy and improvement.  Many in this room, including me, are
superb--let's lay it on thick and proud--brilliant and successful
practitioners in the world.  Yet nearly each of us, in our open moments,
questions the cost and validity of the effort.

What are you trying to fix?  To guarantee in advance?  Is your daughter
telling you she's afraid?  Is she unclear about your goals?  Are they hers
yet?  What does she understand about her body at seven?  Is she sensing hers
at 15, 25?  Does her vision of her future coincide with yours?  Is she yet
telling you you're not accepting her as she is?  How do you respond, if she
does tell you or perhaps purposely doesn't?  What are her issues and
sensibilities, are you nurturing or forcing her (well, sometimes more one)?

Many of my friends have the very problems and embarrassments that you seek
to prevent or minimize and they are working or have worked them through.
They've even worked around obstacles you haven't mentioned and perhaps
haven't thought about for your daughter, or yourself.  Never underestimate
CP-human ingenuity.

But its not only the mobility, lost childhood, and teenage acceptance, is
it?

I can't tell you and am not even trying when to decide enough is enough.  In
the rush to do the best is often overlooked the best need not be done or
done a particular way.

Part of what I interpret is that you are very concerned about her opinion
about you, and others opinion about her and you.  I sense you've found the
doctors "you" want.  If she didn't live in a CP body that you think you can
and need improve, then what, you'd raise her with guidance, discipline,
persuasion, education and love, maybe orthodontics.

You state she's already missed enough normal childhood.  Look at the plan
you lay out for the next year or two or how many beyond that.  It's all
child's play and normal?  She'll become a more normal teenager, that's the
hope.  Assuming the surgery goes ok.  Assuming she otherwise becomes a
normal teenager, whatever that is.

Now I can postulate she becomes a normal teenager with CP, whether or not
she stands and walks and/or uses a wheelchair or more easily toilets and
bathes herself.  What she needs is her happiness with herself as she is and
support in finding her own way.

And don't you need her consent and approval, as she does yours.  So far you
admit you haven't convinced her or at least gained her provisional
concurrence.  She's bright: she will remember e-v-e-r-y-t-h-i-n-g.  You're
running risk for her later approval?  In my sensibility and experience
you're nearly raping her (for her own good of course).  Think she won't bury
her hurt deep down then learn to tell you what you want to hear?  She knows
better than you you're trying to fix the unfixable.  You're already implying
her opinions and feelings aren't quite important or valid, that you know
better than she (Because she's seven?) how to make her and her life more
workable and worthy.  At least if you don't have her consent let her know
you accept responsibility, are making a tough adult decision.  Please, let
her know she's fine as she is and that risk may be worth the reward of gain,
that you're trying to help her do things better and easier.

I guess you touched anguish in me.  Maybe I felt forced against my will one
time too many in my life.  Maybe my self esteem has its own wobbles.  Maybe
I'm just smarting and disgusted with the assumptions and pretenses and
denials of the normal able bodied world.  Maybe I'm sick and tired of being
adjusted and adjusting to where justice won't be extended.

My mother: expect she wanted her Frog-Prince to marry a Jewish Princess,
loathed the wheelchair "using" women I was dating, grieved her discovery I
lacked the proper self esteem to date somebody less beneath me.  I guess in
the end the truth wills out.  Seems mothers have much in common whatever the
generation.  I "use" a wheelchair now, for out in the world ambulation.  At
least, not being bound to the chair, I can stand and hug you.

I wish you well and offer my support such as it is and can be.  If you read
this through, thank you for giving me the chance to have my say.  I feel
that at least I didn't remain silent.  I can live with that.  Maybe all's
not lost.  Good luck.  And great results.

I know you're a mom who loves her kids and wants to do what's right for
them.  I appreciate that.

Steve Margolis





Date:    Tue, 14 Sep 1999 14:53:36 -0400
From:    Jan Nottmeier <[log in to unmask]>
Subject: Re: New Member

Hello Elaine,

let me start off by welcoming you to the list.    Your e mail concerning
your
daughter caught my eye.  After reading your latest e mail I got the
impression
that your mind is already made up.  Nevertheless please take note of these
suggestions, along with everyone elses.

First, experience has taught me to take doctors promises with a grain of
salt.
Don't get me wrong I hope I am wrong and everything works out for the best
for
your daughter and your family.  I don't know to what extent your child has
been
effected by CP.  But I can tell you, that I have been promised a lot of
things
that never turned out.  One example in the summer of 95. I had to get a
referral
to a specialty clinic in Hanover (Germany).  Where I had to go through a
general
doctor in order to get the referral.

He spent most of the time telling me that if I did as the clinic advised
(which
was wearing braces).  I would never have to use a wheelchair, even for long
distances.  When I arrived at the specialty clinic I was told by the head
doctor
that not having to use a wheelchair was not realistic and not to be
expected.  He
said "you can not expect this."  Again I hope everything works out for the
best.
But I would strongly suggest that you get a second opinion,  before
proceeding
with the operation.  I just fear you have not been given all the facts.
Because
I have never heard of a 100% guarantee of success.  Also with my personal
experiences, I am guarded toward doctors' promises.  As I stated above.
Believe
me it is very demoralizing expecting something and getting something totally
different.

If you do go ahead with the operation.  May I suggest you talk to your child
about the operation beforehand.  Explaining your reasons.  I realize she is
only
7, but trying to open a dialog may lessen her fears.  Or at least it did me
before having an operation.  I am Not a parent.   I am a 21 year old male,
but
that's how I would handle it.  I am sorry this e mail is so long, better end
this
now.  But whatever you decide I hope it turns out for the best.

Jan

Elaine Taylor wrote:

> Hi, yes, I could wait, however, I feel that she has missed out enough of
her
> childhood.  I want to see her play hopscotch (out of her wheelchair), swim
> independently and than be able to stand in the pool when she's tired of
> swimming.  I think about when she's a teen and someone asks her to a
> sleepover and she wouldn't be able to go because she can't stand on her
own
> to be able to go to the bathroom independently.  BTW, the doctor has told
me
> that this will work 100%, no ifs and's or but's.
>
> We were discussing it tonight at dinner, and it kills me that I have to
make
> this decision without her support, but I feel that as a parent, I must
make
> decisions that will impact her future.  She's allowed to make decisions as
to
> if she wants to wear her TES at night or not, and if she wants to do
therapy
> at home or not, but this is to important of a decision to leave up to a 7
> year old.
>
> Elaine