[tri-med] Re: freaked out and upset

You are so right.  My job has the same thinking.  I am always walking a
thin line with my attendance.  They are understanding of the
appointments and surgeries but when it comes to me being worn out and
needing a day here and there because I have run out of fumes they don't
understand.  My family feels the same way.  They understand but don't at
the same time.  They live 30 miles from me and I am always supposed to
go to them to have them watch Logan.  Which is fine BUT it is 30 miles
away from me to drive 30 miles back to do what I have to do and then 30
miles back to get him and then 30 miles back home.  I figure with all of
the travel it is not worth it so I don't do it.  Some times I feel lucky
that I don't have any other children or had one before Logan.  I just
don't know how it is to have anything other then what I have to deal
with now.

Tina M. Arbogast

-----Original Message-----
From: tri-med-bounce@xxxxxxxxxxxxx [mailto:tri-med-bounce@xxxxxxxxxxxxx]
On Behalf Of Sue&Glenn Hardy
Sent: Sunday, January 25, 2004 2:25 AM
To: tri-med@xxxxxxxxxxxxx
Subject: [tri-med] Re: freaked out and upset


>>>>>> I think each one of us know that our children could
go to sleep and not wake up.  We try not to think about it but it is a
reality that we face. >>>>>>>>>>


this is so true, even with Rebecca being 12 1/2 yrs......and esp. with
me
being an RN, I  see things that I know are "not right" i.e. Her feet are
now
showing some swelling.......good thing we see cardiology in
March......... I
am sure they will say its fine....... but I know its not ( fine for her
but
not normal)  and this is something that I am sure all of you with young
children will experience when we got the initial DX and were told the
baby
would die, all our families and friends were like waiting for it and
because
the baby did not die they figure the stress is over. We all know that no
matter how long our triers live that they will die and that we will
outlive
them, I find that having everyone else thinking the episode is over
stressful, they just don't get it, even though our kids are doing well
they
are not normal.  And I really don't think about it, you can't or it will
drive you nuts, but I do remember to touch base with my son from time to
time as to the reality of Rebecca, hoping to educate him so that it wont
be
totally devastating to him if and when she passes ( she is older so she
has
always been in his life)  "normal families " don't have to think of such
things which does add a burden to ours




Don't fight with dragons, for you are crunchy and good with Ketchup.

Susan mom to Rebecca trisomy 18 moasaic age 12 and Mark LD/ADD age 11.
wife
to Glenn
Ontario Canada



                  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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