[tri-med] Re: conference video - was Do tri 13/18 kids experience joy?

Kandy,
 
What a cute, nice poem.  As I sat reading it, my son was listening to some rap 
music and it is amazing how well your poem fit the tune!
 
Annette, mom to Annette Reina fullT18 deafblind multihandicapped and the most 
beautiful girl you have ever seen
 
By the way, Annette does experience joy.  Do you know why she's the most 
beautiful girl you have ever seen?  Because when I ask her this, she ALWAYS 
rolls her eyes up to answer me.  One time when she was asleep, (she doesn't 
close her eyes all the way when she sleeps)  I whispered this in her ear and 
her eyes fluttered to answer me.  lol  Even in her sleep, she thinks she is the 
most beautiful girl you have ever seen.  And so do I.

--- On Wed, 8/27/08, KK G <kkgsupermom@xxxxxxxxx> wrote:

From: KK G <kkgsupermom@xxxxxxxxx>
Subject: [tri-med] Re: conference video - was Do tri 13/18 kids experience joy?
To: tri-med@xxxxxxxxxxxxx
Date: Wednesday, August 27, 2008, 4:06 PM

Debbie, 
     Good idea, I would love to see a conference video, as I have never been to
a conference before & don't know if we could ever do so ($$ mainly, time
too) in the future. While Christopher was living, I had never met another T-18
child. It wasn't until after his death that I had the opportunity to meet a
sweet little girl in Portland, Oregon, named Jenna "Jenna Joy"
Alexander. I was so thrilled to meet her. She lived to 10 1/2 years old
(4-'93~12-'03), much longer than our little Christopher did. Just
meeting her meant so much to me. After Christopher died, I wrote several poems
& here is the one I wrote about Jenna Joy & her mom:

Molly & Jenna Joy
Jenna Joy?s mom
is Molly Alexander
I know I have a true friend in her
She?s special, We?re Mom?s of
a feather,
And have something common
together

If it weren?t for our
children weak and small

We wouldn?t have known each other at all

Beautiful children both,
sweet Jenna Joy,

And Christopher, our precious
little boy

Special children, made our
lives more complete

It was wonderful that both of
you I got to Meet

So precious and special,
where do I start?

Lovely Jenna Joy you so
touched my heart

Before meeting you it was
Christopher, my son

Was the only T-18 I?ve ever
known, the only one

I got to see you and meet you
& touch

To me it meant so very, very
much

The beautiful girl with long
silky hair

And such a really cool purple
wheelchair

To see you, to feel your soft
skin

Made me happy, so joyful
within

Delicate little hands, soft
to the touch

You didn?t open
your pretty eyes very much

An occasion that
I will never forget, it?s true

I will treasure the photos of
and with you

Although for now we are
apart,

These will always be inside
of our heart

Its been hard for us but God does know

Each of our trials do make us
grow

Our Father promises there
will be a resurrection

Healthy flesh given to your
daughter and my son

That?s when they will be able
to run & play

With strength and energy
throughout each day

They were in our lives, the
time just too brief,

A mom must experience oh,
such grief

Molly, Thank you! Letting me
in your life is a treat

And your Jenna Joy, getting
to know her so sweet 
 
~Kandy K Goodrich


~Kandy K Goodrich

~wife of David (just had our 24th Anniversary Aug 12th)
~mom of 4 beautiful children:
Brian (22 yrs old & had gall bladder surgery Aug 6th, going to
Jr College), 
Joshua (17 yrs old, Senior in High School, ?music? major),
Christopher (Our precious little baby, 3-6-1997~1-26-1998, Trisomy-18),
& Sarah (7 years old, beautiful, strong-willed, very smart & in 3rd
grade)


 
See Goodrich family pictures at:
http://www.flickr.com/photos/kkgsupermom/ 
Check out our precious Christopher's web page: 
http://Christopher-Goodrich.virtual-memorials.com



----- Original Message ----
From: Debbie <debbwebb@xxxxxxxxx>
To: tri-med@xxxxxxxxxxxxx
Sent: Wednesday, August 27, 2008 1:04:38 PM
Subject: [tri-med] Re: conference video - was Do tri 13/18 kids experience joy?

Why can't the lectures, etc, at the SOFT conferences be taped/video'd
for
those of us who cannot go?
In this great age of technology, if some one could tape the conference, it
would be nice to send copies to the drs who *are openminded, (the others are
hopeless) or posted them (I'll do that)!  Send me a VHS, DVD, CD, 8mm...
whatever you have... Claire wouldn't mind giving up some space on her site
and others could link to it if they wanted... does such video exist?

Going to CO was just too much of an expense for us this year - including
time off work - and the same for many other families, but to see this stuff
on my pc would really be beneficial to my family and many many others.  It
would also motivate folks to go to the conference when it is closer to where
they live... and give input and get feedback in person.

Debbie, mom to Claire(T18)

On Wed, Aug 27, 2008 at 1:39 AM, <dncingqwn@xxxxxxx> wrote:

> this is just one of the reasons that i would encourage anyone to try to
get
> their doctors to attend even a small part of a SOFT conference or
something
> similar. everywhere you turn around you find a bright shining personality.
i
> can remember sitting in the lobby in denver one night. saskia was on the
end
> flirting with any man that would walk by and look at her. any one of the
> women tried to talk to her she just gave the look like?"excuse me,
i'm
> busy." and went back to smiling and reaching for the nearby
men.?morghan was
> pretending, as usual, that she wanted nothing to do with either me or
kaiya.
> (one of these days she's going to give me a hug i just know it!) but
she was
> perfectly content to sit and cuddle with her mom or debbie.?kaiya was
> hamming it up for anyone that would talk to her. and little ava was
asleep.
> kaiya looked over at ava all snuggled up, let out a big yell, and then
kept
> looking at ava sleeping. she let out a couple more yells until ava finally
> woke up, cry
>  ing because the mean loud kid scared her. kaiya gave one of her evil
> little smirks, started giggling, and then went back to hamming it up for
> everyone else. all of these kids are extremely interactive. i could go on
> all day with stories about different kids... it's ridiculous that
doctors
> feel they have the right to treat families so carelessly. these are our
> children, and while the doctor may have a difference in opinion in
reguards
> to care, it does not give him the right to disrespect our families by
> treating one of the members as if they are worthless. it took kaiya's
ped a
> long time before he addressed her specifically. he would come into the
room
> and talk to me, and hardly look at her it seemed. she would be grabbing
his
> hands, his stethoscope, his jacket, anything to get his attention - and he
> just didn't look at her. one day he tried to look into her mouth with
a
> tongue depressor. she clamped her little mouth shut as soon as she saw the
> darn thing. he finally looked a
>  t her. and i think he was amazed at what he saw. he even said someth
> ing like, "she's a lot smarter than she gets credit for." i
wanted to shout
> DING DING DING! you win the prize! way to pay attention and realize that
> there is a kid under that diagnosis! now when he walks into the room he
says
> hi to HER and talks to her for awhile before talking to me. of course now
> he's asking her things like, "what did your mom do to you this
time?"...but
> that's a whole nother story :)
>
> i don't know if i'm making excuses for them, because i refuse to
believe
> that anyone could be so heartless, but i think that all doctors need to
hold
> themselves back sometimes. especially the ones dealing with children. it
> would be so easy to get attached to all of their patients i'm sure,
but then
> how would they go home and sleep at night. i was watching one of the baby
> shows on TLC the other day and a woman that had lost twin boys said
> something that struck a chord with me. she said, "nobody ever told us
before
> we got pregnant that babies can die." when i heard her say that, it
struck
> me immediately that that was probably what my biggest problem was. i went
> into the pregnancy with the assumption that i would have a healthy baby at
> the end of it. there was no reason not to think that way. there was no
> reason for a doctor to tell me "hey, just so you know...some babies
die." so
> it comes down to tact, and the ability to empathize with a patient without
> making their issues your
>  own. they don't have tact101 in medical school, and maybe they
should. i
> wish there was some way to help these doctors understand, and some will,
but
> most won't....and it's a good thing we have this listserv to vent
about
> their ridiculous behavior.
>
> and i would definitely love to know if there was a copy of dom's
speech
> available. i was there, and it was really really moving. i would love to
be
> able to share that with my family, kaiya's teachers, and people that
work
> with her.
>
> kelly - mom to akaiya t18
>
>
> -----Original Message-----
> From: Barbara Farlow <b_farlow@xxxxxxxxxxx>
> To: tri med lists <tri-med@xxxxxxxxxxxxx>; triwings <
> tri-wings@xxxxxxxxxxxxx>
> Sent: Tue, 26 Aug 2008 8:09 pm
> Subject: [tri-med] Do tri 13/18 kids experience joy?
>
>
>
> Hello friends in trisomy,
> In communication recently with an experienced neonatologist, I was quite
> surprised to read that he believed that children with tri 13/18 were not
> worth
> saving because they were "not sentient", which means that they
are not
> capable
> of experiencing joy or interacting with their surroundings.
>
> Wow. This is certainly not what I saw when I did research before my
> daughter was
> born. Sure, it is a tough road, with a lot of sacrifice. But as for not
> experiencing joy....
>
> I sent him some videos; a child with tri 13 and mieko videos (I made
> special
> mention of the one aptly named, "giggles")
> I seriously wonder if loving parents see something as clear as day that
> physicians and the medical system are blind to.
>
> Does anyone have any comments about this?
>
> By the way, the ironman just finished his 11th race to increase awareness.
> He is
> getting more and more press each time. It is pretty exciting.
>
> www.ironmanforkids.com
>
> Barb  (mom to Annie)
>
> _________________________________________________________________
>
>
>                  Building ___ooOOoo__ Rainbows
>                      www.trisomyonline.org
>                  Families Helping Families On-line
>
>
>
>                  Building ___ooOOoo__ Rainbows
>                       www.trisomyonline.org
>                  Families Helping Families On-line
>
>


-- 

When babies look beyond you and giggle, maybe they're seeing angels.
~Quoted in The Angels' Little Instruction Book by Eileen Elias Freeman,
1994


                  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

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