--- Betty B <[log in to unmask]> wrote:

> Everything is a disability.  Having a sibling with a
> disability is a
> disability.  Whatever.


First off let me say that this  lady should not expect
you to heal her hurt/wounded family feelings. I am
going to give you a whole different POV and maybe show
you a bit where this lady is coming from.
As you all know Alex is the last of the 7 kids I've
given birth to...explaining his middle name of Omega
;).
As you also know Alex started his life in the NICU as
a very small preemie, spent his first 3 months in the
NICU and has had more than enough surgeries in his 7
years as well as many hopitilazations on top of that.
We haven't even gotten to therapies etc.
I really can see how this woman could have come to
feel neglected and less worthy and loved than her
sibling growing up. How many times did she have her
parents buy balloons/toys etc because the sib was in
the  hospital and she got nothing. How many of her
birthdays were downplayed because she was "normal" and
the sick sib had the cherished celebration for
surviving another year? All those strangers who wanted
to make themselves feel good bought the sib in a toy
or a treat in the store and nothing for the sib.
Children are very egocentric at  these very young ages
and internalize these I'm not good or special feelings
and don't have the capacity to think as an adult. If
her sib died was she memorialized as a hero simply for
having a disability? How can you ever live up to that
image being "normal"
This is something Hubby and I have fought very hard
against. In the  NICU Alex was often alone because one
of the kids needed to be picked up from school driven
to an activity etc.It would have been easy to find
other parents willing to drive but the older ones were
worth our time and effort and we wanted them to know
it. We were very determined that none of the older
ones would have to give up any activities because of
Alex and his needs.It did indeed result in a very
tired mom and dad but it was our choice to have the
kids and not the kids choice to have siblings. There
have indeed been times when Alex's needs did take
priority over another activity but it was always an ER
situation and if another of the kids had the same
situation the choice would be the same. All the kids
have had me or dad( and usually Alex) at the games
cheering them on. They have all been involved in his
life as he has been in theirs.
Hospitalizations don't result in presents for any of
the kids but they know I'm there with them every
second of the stay. Strangers are not allowed to buy
things for Alex nor does he get "freebies" unless the
others are included. Alex's disabilities don't make
Alex special any more then "normal" makes you
ordinary/un special. Alex makes Alex special just as
Jenny, CJ,Chris,Jack Max, and Noah are special and
unique in their own right. I think all this lady
really wants anyone to say to her and maybe coming
from on that is disabled themselves is important, is
that having the disability didn't make her sib any
more special than herself without the disability and
that indeed she did get the short stick in the
nurturing dept. It probley wasn't intentional on her
parents part but yes it still hurts just as bad. You
may also give her a POV she hasn't though about from
her handicapped sibs view of the same situation...that
the she was never good enough for who she was and the
folks constant need to fix her. She may have indeed
been envious of her non disabled sib for being left
alone and accepted as good the way she was. Sounds
like no one won in this family even with the best of
intentions.
Joanne



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