[tri-wings] Re: pictures

>>>>>>>>>>>>No it still hurts too much to hear all their stories about the
things they 
are going through with their children that are living with Trisomy. I know
what 
most of the children's lives are like but I will always have that in the
back 
of my mind ....what would HIS life be like?<<<<<<<<<<<


no one can answer that, as all of our triers are different..............look
at Aussie Alex he does very well cognitively but has huge medical issues, my
Rebecca was pretty healthy and developmentally did more then a lot of the
kids but still functioned very low ( by the standards of those who measure)
my life and that of my family has been very different that what I
imagined..........some would say it was a hardship and feel sorry for me but
you get used to what you get and it becomes normal to you.  Certainly Mark's
life is very different then his peers...........which helps and hinders him
as well.  I cant say that I regret not getting  that "normal" life as I have
met many wonderful people who have become great friends, and I believe I am
a much stronger person for it,  but on the other hand our family has missed
many quote " normal " experiences and endured things that typical families
don't.   I think we all wish for more.......I know I do even though at times
I felt a great burden with the job of Rebecca, we often joked that arranging
her life was like a job, making sure some one was always here for her ( both
of us are shift workers and I work part time)  our parents are getting older
and were becoming less of a resource, both Glenn's parents and my mom were
having trouble getting Bec in her wheel chair into the house.  And I was
really beginning to worry about the future ( when they could no longer help
us) also I was beginning to worry about life after high school (she was in
grade 9, but could stay in high school until age 21 )  that burden has
lifted and I am left with the burden of missing her and her smile and her
silly games, one which was refusing to let me take her mitts out of her
mouth, she really seemed to find that one funny,  I am also left with the
guilt...........that I should have realized she was a sick as she was mind
you that was compounded by the severe condition of her heart....another
guilt trip............should have pushed the issue...........could have
should have all the hindsight virus..........in my heart I know
that...........but.............after all this rambling Stacy all I can say
is that there is no good time to loose a child disabled or not it really
sucks ( sorry couldn't think of another word)  and I imagine in some ways
its easier if it happens earlier and in someway its better if it happens
later, I think after the grief we all rationalize that our way is better to
ease the hurt.  I am still having trouble with the idea of getting rid of
her medical equipment even though I hated having my house full of it ( I
knew we needed it and used it but resented the space it took up)  in my mind
I keep reviewing things and wishing for a second chance, and even though I
know that's nuts ( psychology training I am an RN)  I still do it, it's a
constant want to go back and do things differently, maybe its to many SiFi
movies LOL.  Not really sure if my ramblings help but..........


Susan mom to Rebecca t18m 06/06/91 - 05/02/06 and Mark age 13 1/2 ADD/LD
 



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

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