[tri-wings] Re: Can anyone relate to this. Second try.

Margaret - i would say how true. Espeically the bit about people saying
about how someone has been 'chosen' and to 'just get on with it' - people
being stupid again!!

Kay - Mum to Kyle Nathan T13 (in heaven 18th April 2000) and Donna 19 yrs -
UK - England

----- Original Message -----
From: "margaret sutton" > Hi all
> Sorry about the previous try, I have typed it in so I'm sure this time.
>  I found this article related to my family exactly and even though Matti
had now passed away the article still hold relevance I think for many who
have lost their Babies/Children. What do you think.?
> As I said I think professionals could also benefit from reading it. You
may like to pass it along.
> Margaret Sutton
> Mum to Greg 33 yrs and Matti forever 28 yrs (Mosaic Trisomy 13)
> Sydney Australia
>
> One day at a time.
>
> On Chronic Sorrow
> From the Hydrocephalus Association Newsletter, Spring. 1998
>
> Chronic Sorrow is a term coined by sociologist Simon Olshanshy to describe
the long term reaction of parents who have a child with a disability. This
pervasive reaction is often not recognised or understood by those around
parents--professionals, family and friends. These feelings of chronic sorrow
are normal and to be expected and accepted, given the life-long implications
for the family and child.
>
> Many factors can affect the intensity and exhibition of chronic sorrow:
the parent's personalities, the severity of the disability and the adequacy
of support and services provided.
>
> Chronic sorrow does not mean that the parents don't love or feel pride in
their child. These feelings, and many other feelings, exist alongside the
sadness. It is as if many threads are woven side by side, bright and dark,
in a fabric of the parents lives. They co-exist; they do not blend into one
colour, or feeling.
>
> Because ours is such a "can do" society, there is pressure on parents to
quickly put their feelings of sadness away or deny them. Parents are told to
"think positively and "to get on with your lives."
> They are told that God has " selected" them to receive this special child
because they are such strong people.
> These kinds of comments, while well meant, deny the validity or parental
log-term grieving. The discomfort of observing pain in those we care about
can be part of the reason for such comments from others.
>
> Grieving, however, is a process that takes time, often years. It's a
prickly bush that one must go through, not jump over.  It is lonely to be
the only family on the block with a child with a disability.
>
> Chronic sorrow becomes a permanent part of the personality structure of
most parents who have a child with a disability. It's a normal response. Its
thread narrows and widens depending on life situations: most often it is
accepted with courage. And, although permanent, it is not the dominant force
in interactions with our children.
>
> The dominant forces are love and feelings of connectedness to them.
>
> Margaret Sutton
> Mum to Greg 33 yrs and Matti forever 28 yrs (Mosaic Trisomy 13)
> Sydney Australia
>
> One day at a time.
>
>                   Building ___ooOOoo__ Rainbows
>                        www.trisomyonline.org
>                   Families Helping Families On-line

                  Building ___ooOOoo__ Rainbows
                       www.trisomyonline.org
                  Families Helping Families On-line

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