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"St. John's University Cerebral Palsy List" <[log in to unmask]>
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From:
Betty Alfred <[log in to unmask]>
Date:
Thu, 1 Jun 2000 08:28:28 EDT
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"St. John's University Cerebral Palsy List" <[log in to unmask]>
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Don't be sorry Nancy, for heaven's sake that's what the list is for.  If you
can't vent among friends, where in the heck can you vent?

Your sister is truly in a rough situation, and I'm very sorry that she is
going through all of this without the help of one particular Detroit Lions
fan.  I'll bet she really hates football now.

You know, sometimes you just want to give some people a good shaking!  "WAKE
UP FELLA!!!" (is that about right?)

In a message dated 05/31/2000 6:05:15 PM Eastern Daylight Time,
[log in to unmask] writes:

> I agree with Bobby that parents of special needs children should have the
>  support of their family and community.  But, selfishly, I wish that I could
>  honestly say that my sister in Memphis did.  When I had my twin girls early
>  and found out all their problems, I never wished it upon anyone!  Lo and
>  behold, my sister (who I always fought with when we were young) had twin
> boys
>  4 years ago at 28 weeks.  She lives in Memphis with an a%$#hole of a
husband!
>
>   Her one son has a trache, vent dependent, tube fed, deaf, VATERS
> association
>  (I can't even remember everything else).  She was an RN with UT Medical
> Group
>  but had to quit because all her time was spent running kids to doctors and
>  hospitals.  Matthew ended up in the hospital for over 14 months before he
>  came home for the first time.  I guess I could ramble on about this, but
the
>  bottom line is she has no one in TN to help her.  Her in-laws can't
>  understand why she is so uptight when (if ever) they visit.  Her husband
>  can't handle the stress of the care Matthew needs, so he won't travel with
>  her here to Michigan.  My husband and Uncle are driving down there to pick
>  her up and bring her to my home to stay for 2 weeks because her husband is
a
>  JERK!  When she was here last November for Thanksgiving (stayed with me
>  again; had an uncle go pick her up), her mother-in-law and sister-in-law
>  invited her over for dinner, but paid no attention to Matthew.  Very little
>  to Christopher (his twin).  They made me so mad.  When an aunt told my
> sister
>  "she didn't know how she did it" with taking care of everything, Vicki's
>  response was "you just do it".  Her MOTHER-IN-LAW'S response was "Well,
> there
>  have been many with multiples that found a way to deal with their children,
>  it really is no different".  EXCEPT THAT THOSE THAT HAD MORE THAN TWINS HAD
>  THEM NORMAL AND RECEIVED FREEBIES FROM COMPANIES!!!! (I work for P&G who
>  supplied some with a lifetime supply of diapers).  I CAN'T EVEN GET DIAPERS
>  FREE FROM WORK!!!
>
>  Sorry, this just got me started!  If you only knew how my sister is having
> to
>  fight all these battles (insurance, nursing, HUSBAND).  She got into
selling
>  Mary Kay to give her something for herself, but can only do it when the
boys
>  are taken care of (very little time for that).  But her husband thinks
>  nothing of buying season tickets to Detroit Lions Football games and flying
>  here whenever he wants.  I know she wants to get out of that situation, but
>  she can't afford things financially.  And she has such difficult times
> trying
>  to get help from various places.  I keep trying to tell her to move here
and
>  she''ll get more help.
>
>  Gosh, I'm rambling . . . I am truly sorry!  This situation just really gets
>  my goat!  I just can't wait til they come to visit.  Hectic, but enjoyable!
>
>  Nancy
>

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