[tri-med] Re: life excpectancy

Hi Sharon,

Irene has expressed exactly what I was thinking after reading your email.

We were told to "take Tess home to die", and here she is 12 years 
later all smiley and happy and living as full a life as you would 
expect from someone with her condition. If you are thinking in terms 
of "how long will I have Jason", you will live a life of daily 
anxiety, try doing a day at a time, and enjoying what that day brings 
and making it as fun as possible for Jason, I've found that's the 
only way I could continue to do the best thing for Tess as her 
grandparent. They pick up on your mood for certain. I remember one 
time a few years ago, when I was caring for her, and we'd had a bad 
night, I was crying softly, while lying next to her and she reached 
out and touched my eye. I can't begin to tell you how profoundly this 
affected me, and I vowed to try my hardest to maintain a more 
cheerful disposition when close to her.



At 04:20 AM 1/04/2009, you wrote:
>Oh Sharon, please do not bother asking these so-called experts what Jason's
>life expectancy is.  They CAN'T know!  If he had a specific illness or
>condition - say a serious heart complication, or cancer - they MAY be able
>to estimate.  But just based on his trisomy?  NO WAY!!!!  Just look at the
>incredible differences between the lives of the more common T13 and T18
>children.  Some don't survive birth, and some spend many many years on
>earth.  Wasn't there a T18 girl who lives well into her 30's??  NO expert
>EVER would expect that.
>Asking anyone (especially an LPN!!! YIKES!!  She knows next to nothing,
>actually she knows less than nothing when it comes to a rare trisomy, YOU
>know MUCH more than she!!!!) what his life expectancy is almost like asking
>what your own life expectancy is.  Yes, healthy women can live well into
>their 80's or 90's or longer!   But too many also die early from all sorts
>of things.  NONE of us knows how long we have, and NONE of us knows how long
>Jason has.  Even the experts.
>
>Please take care, enjoy TODAY, tomorrow will take care of itself.
>
>Irene
>
>On Tue, Mar 31, 2009 at 1:08 PM, <SHAMOND73@xxxxxxx> wrote:
>
> > Has anyone been able to get any answers on life excpectancy from any of
> > their doctors. No one tells me anything, and i am beginning to think it is
> > not
> > because they don't know. who do you think is the best specialist to ask
> > such a
> > question. my nurse just told me she thinks Jason will make it until 5 or 6,
> > that  when people are so small, and not growing properly their systems just
> > start  shutting down. Has anyone heard this before?? She is only an LPN,
> > not a
> > real RN,  or a doctor, so i am not sure i believe her. Any one have any
> > information on  this.
> >
> >
> >
> > Sharon
> >
> >
> >
> >
> >
> >
> > In a message dated 1/19/2009 1:04:58 P.M. Eastern Standard Time,
> > jlvking@xxxxxxxxxxxxxxxxxxx writes:
> > I know  there have been reports of people being fired for blogs and things
> > like  that where they criticized their employers but I haven't heard of
> >  any
> > employer checking those things out ahead of time.
> >
> > Sharon, I  believe you have mentioned in several of your posts why you are
> > wanting to  delete a particular post. You have even told when it was
> > posted.
> > That just  adds another post that mentions what you don't want revealed and
> > points to  the original. And then there are the posts where someone replied
> > and quoted  your post. Do you realize that you are no longer talking about
> > deleting one  post. Just deleting the original wouldn't make a difference
> > now.
> >
> > I  do think you are making yourself worry about something that would
> >  probably
> > be glossed over. I'm sure there are many of us here that have  thought dark
> > thoughts on more than one occasion. This is supposed to be a  place where
> > you
> > can do that and everyone understands. If your comments were  made out of
> > the
> > blue in a cooking forum I would wonder about it. But here?  No... you are
> > perfectly "normal" given what you are dealing with.
> >
> > So  while Karen might be able to delete one post it will never really be
> > gone.  There are all kinds of archives out there. And again, while she
> > might
> > be  willing to delete one post she really can't be expected to go through
> >  and
> > pick out every single post that has a quote of it in the reply. That  would
> > be unreasonable to expect from anyone. And if she did then maybe  (the
> > hypothetical) Jane Smith, who mentioned her second-cousin-twice  removed
> > and
> > the affair she is having with her mother's hairdresser's son,  would want
> > that post (and the ones referring to it) removed because her  cousin
> > doesn't
> > know she knows and it just cured to her that she mentioned  the list to her
> > mother's hairdresser because of her grandchild's genetic  condition. It's
> > just not feasible.
> >
> > We all had to agree to the  "rules" when we signed up. I'm afraid that this
> > is something that will just  have to be let go. I hate to say it but for
> > most
> > people the things that  they guard so fiercely are the things people want
> > to
> > find out. You made a  comment. You're feelings have changed. No problem.
> > Happens to the best of  us daily!
> >
> > If you hadn't said anything about the post no one here would  even have
> > given
> > it a second thought. Now it keeps being brought to mind.  Please, please,
> > please don't let it drive you nuts.
> >
> > -----Original  Message-----
> > From: tri-med-bounce@xxxxxxxxxxxxx  [mailto:tri-med-bounce@xxxxxxxxxxxxx]
> > On
> > Behalf Of Shawn & Tammy  Armstrong
> > Sent: Monday, January 19, 2009 12:18 PM
> > To:  tri-med@xxxxxxxxxxxxx
> > Subject: [tri-med] Re: UPDATE & please  HELP
> >
> > I worked as an HR Generalist for years for a Fortune 500  company.  I can
> > tell you that "googling" your name is not something  that an employer is
> > going to waste their time doing.  I have never  heard of a company sitting
> > around "googling" peoples names.  There  are probably several hundred or
> > even
> >
> > thousand people that have the same  last name as yours, so it would be
> > impossible for anyone to even know it  was actually you.  Legally, any
> > company that hires you can only have  access to the personal information
> > that
> >
> > you give them the legal right  to view (drug screening, background
> > screening).  It would be illegal  for them to "google" your name and try to
> > use some type of  e-mail on  a list-serve against you.  I really think you
> > are putting way to much  into this.  I hope you can find some calmness and
> > comfort and not let  this continue to worry you.  It's not like your a
> > convited  felon.........................don't worry you will be  fine.
> >
> >
> >
> > ----- Original Message -----
> > From:  <SHAMOND73@xxxxxxx>
> > To: <tri-med@xxxxxxxxxxxxx>
> > Sent:  Monday, January 19, 2009 10:57 AM
> > Subject: [tri-med] UPDATE & please  HELP
> >
> >
> > > hi everyone,
> > > I am not sure if you remember, but i  posted a post in August signed with
> > > my
> > > last name  accidentally. So when you google my name, it pops up
> > > immediately.  i
> > > was unaware due to my own "spaciness" that these boards could be
> >  archived
> > > for
> > > the world to see. i thought that because there  was a whole password etc,
> > > it
> > > was  completely private and  only accessible to those who were members, i
> > > did
> > > not   think that a google could give you access to all the archives of
> > >  posts.
> > >
> > > i have been trying to get just that one post deleted  that contains my
> > last
> > > name. i have contacted "sue" at   _whiteheads103@xxxxxxxxxxxxxxx
> > >  (mailto:whiteheads103@xxxxxxxxxxxxxx)    a number of times. She in
> >  return
> > > has tried to email,
> > > telephone, and contact Karen, who  is the administrator of these boards,
> > > but
> > > there has been zero  response. She sais that Karen is the only one who
> > can
> > > delete an email,  or knows how. So basically,  there is nothing she can
> > >  do.
> > >
> > > I would not care if an email of mine showed for the whole  world to see,
> > if
> > > it did not have such private and confidential  material in it. It talks
> > > about
> > > abortion, not wanting to be on  earth anymore, depression etc.....i know
> > > that
> > > when i am going  to be looking for a job in September and my potential
> > >  employers
> > > google my name, i am "screwed". What i talked about in that  email is no
> > > ones
> > > business except the people on this board  that i emailed it to. no one is
> > > going  to hire me, thinking i am  possibly suicidal or have mental
> > > problems!
> > >
> > > i have to  say that thank g-d, now, i am doing well, i have dealt with
> > >  Jasons
> > > Trisomy and have come to accept it, and not blame myself, for  what i
> > > could
> > > have, should have or would have. i thought i was  fine, if i did not want
> > > to
> > > run my car off the road, but not  wanting to be on earth, i cam look back
> > > now
> > > and say-  is  pretty bad. compared to how i am now, i look back and see
> > >  that,
> > > that i was very extremely depressed.
> > >
> > > Jason is  now doing well, he still has the same issues, feeding, so tiny,
> > >  but
> > > he is just such a cutie pie. IT still breaks my heart, but i am no
> >  longer
> > > depressed and have moved on from the initial dissapointemnt,
> >  bereavement,
> > > depression etc.
> > >
> > > i was actually pregnant 2  months ago and have since miscarried, but it
> > was
> > > such a wonderful  time, i was so excited and nervous at the same time,
> > but
> > > for
> > >  the first time since jason was born, i had something to look forward to,
> > > and i
> > > was EXCITED.
> > >
> > > in the same token, i am  finally ready to go back to work, and just
> > really
> > > want this post  deleted. i truly feel it will be used against me, and its
> > >  just
> > > discrimination and its not fair.-  Does anyone have any  ideas how i
> > could
> > > accomplish getting rid of that specific post? it is  so unfair that there
> > > is  no
> > > one in charge of these  boards, no active administrator who can help. If
> > > anyone
> > > has  any ideas or think of anything, or knows how to get in touch with
> > >  Karen,
> > > please let me know. i would really appreciate  it.
> > >
> > > Thanks,
> > > Sharon
> > > mom to Jason T17m (19  months) and Lauren (3 1/2 yrs  old)
> > >
> > >  **************Inauguration '09:  Get complete coverage from the
> >  nation's
> > > capital.
> > >  (
> > http://news.aol.com/main/politics/inauguration?ncid=emlcntusnews00000003)
> > >
> > >
> > >   Building ___ooOOoo__  Rainbows
> > >                   www.trisomyonline.org
> > >         Families Helping Families On-line
> > >
> >
> > Building ___ooOOoo__ Rainbows
> > www.trisomyonline.org
> > Families Helping  Families On-line
> >
> > Building ___ooOOoo__ Rainbows
> > www.trisomyonline.org
> > Families Helping Families  On-line
> >
> >
> > **************Worried about job security? Check out the 5 safest jobs in a
> > recession.
> > (
> > 
> http://jobs.aol.com/gallery/growing-job-industries?ncid=emlcntuscare00000003
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> >
> >
> >                  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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Jocelyn,  wife to Frank,  Mother to Ian, Gillian and Susan, Nanna to 
Carly 21  Mathew 20,  Ashleigh 19, Alex 17,  and Tess  (Trisomy 18,) 
age 12 yrs,  & Benny the Maltese, plus one amazing DIL and two 
amusing SIL's of whom I'm very fond, and their extended family who 
are too many to list here.   

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

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