[tri-med] Re: New to list...looking for options

----- Original Message -----
From: "Jon Clements" <jon@xxxxxxxxxxx>
Subject: [tri-med] New to list...looking for options


>
> Hello All,
>
> My name is Jon Clements, I live in Longwood, FL.   My wife (Naomi) and I
> found out yesterday that our unborn child is probably going to have
Trisomy
> 13.

Hi Jon :o)
First of all...welcome to our list family...although I'm sorry you have
reason to be here. My name is Penny and I live in DeLand FL!!! How's that
for a small world??? I also expect you'll be hearing from Charleen (but she
just started a new job and may not be reading much mail so I'll tell her
about you)...Charleen lives in Lake Mary and had a beautiful little
grandaughter named Ashley who had T13...I believe she lived 5 weeks if my
memory serves me correctly? If you'd like you can call me??? My number is
386-738-5780...I'm here from 3:15PM to 9 when I go to bed! I'll also call my
friend Suzanne who lives in Palm Coast and ask if I can give her number out.
Her daughter Kaylee had holoprosencephaly (sounds alot like what you're
describing with the brain anomolies). Kaylee loved and received love from
everyone who knew her for 5 years...she passed away in January of 2000.
Developmentally Kaylee was as an infant...but she had a smile and eyes that
could express love and happiness and could outshine the sun...as well as
show a little attitude and anger :o) I just realised I didn't yet mention my
reason for being here :o) My husband Joe and I have 2 sons...Nicholas who is
11 almost 12 years...and Devon who's 7 years old...Devon has Full T13 with a
balanced translocation 5 and 13. I'll tell you anything you want to know
about Devon...but in a small nutshell...he's walking (unaided), signing and
using pictures to communicate, potty training (a work in progress),
attending a regular elementary school in a multi varied exceptionalities 2nd
grade class...and he too has a smile that outshines the sun and giggle that
definitely qualifies as infectious. Devon and Kaylee met when Kaylee was 14
months old and Devon was 9 months old :o)
Maybe we could meet Jon...do you think Naomi would like to share with
someone who understands the bombshell that's just been delivered to you?


> They did an amnio to run more tests and we go in next Wednesday for the
> results.  The doctor said that whether it is T13 or not, the fact that the
> brain hasn't developed meant the baby would not survive.  I am at a
complete
> loss.  Naomi is 26.5 weeks along.

Jon...I'm no expert...but to me what that means is that you love your baby
as long as you have him/her. I know from personal experience that the
prospect of having a multihandicapped child might seem insurmountable right
now...but it IS do-able. After having known and/or met a few children with
the brain anomoly you describe...they don't all gain their wings before or
immediatly following birth. Noone can know how long your baby will grace the
world with his/her presence...that includes the doctors. Making such broad
statements in my opinion isn't a wise thing to do on the doctors part. I
can't tell you how many parents have called me after finding us from some
source or another and telling us that their doctors told them that there are
NO surviving children with t13....period.


> If it turns out to be T13, what options will we have?  I know you aren't
> doctors but you have been through this sort of thing and any suggestions
or
> information you could provide would be great.
>
> Jon


Right now I'm pretty sure you're devastated and feeling really alone. The
devastation is something we all have to come to terms with on our own...in
our own time...but you not alone and you can ask anything you want!
Take care and I hope I hear from you...today isn't too soon :o)...and I'd
love for you to meet Devon...he's not a scary kid...really quite a happy,
handsome little man although he's rotten and does tend to hit when he meets
someone new and gets excited :o) We call him Stinky Boy, Devinrude (he makes
a motorboat sound), or the Chief (he does a little dance and chant that
sound just like an indian chief chanting :o)
Please visit the links in my signature tag and meet our whole family for
yourselves :o)
Love,
Penny...devoted wife to Joe and "Mom" to Nick (11 1/2 yrs...lover of Harry
Potter, Pokemon, Fishing, Legos, Zelda, Popcorn Chicken, Pizza, cheese
sticks and chocolate icecream w/ovaltine sprinkles) and "Mommy" to Devon
(AKA-Stinky Boy, The Chief or Devonrude...Lover of Bear, Elmo and the
Muppets, Stuart Little, Barney, Blue, Pooh and Co. and food in general, 7
years old (6-15-95) !!! Full Trisomy 13 w/balanced translocation 5 and
13)... KC (the feline child...Brat gained her kitty wings 7-09-02 she was 16
years old +), Snitch and Lil' Dude (Nick's turtles :o)
:o) DeLand, Florida
Meet our family at http://www.trisomyonline.org/victor.htm  (Compliments of
my dear friend Karen!
And last but not least, check out the homepage I made!
http://www.geocities.com/penvic4/Penny_sPage.html
The stone that was rejected by the builders, has become the cornerstone
(Psalm 118)

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

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