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

Kelly & the rest of you, 
     You hit the nail on the head, ... 
     Christopher (full T-18, 3-6-1997~1-26-1998) was ont of the happiest little 
guys you could imagine. He smiled a lot, he laughed so cheerfully. How could 
they dare even say our children don't have joy- That's a bunch of ..... (you 
can fill in the blank, because I will not say it). He just loved when his 
biggest brother, Brian, would "fly" him around the house & sing "I'm a little 
airplane" or when either of his brothers would "roughhouse" or play pat-a-cake 
with his little hands! Even though he was sick, the day before he died, I took 
his little hand & pet the kitty. He loved her & he smiled so very sweetly. 
~Just check out his pictures- look at those sweet & JOYFUL smiles!!!
     A lot of Dr's look at the diagnosis, not the child. We were very blessed 
to have a Pediatrician who was & is very special. He talked to Christopher, 
interacted with him, etc.... He even said, "We won't let the other dr's treat 
him that way" (as if he wasn't going to live, etc). Dr Christopher Cody is the 
most wonderful Dr & human being! He got close to Christopher & in our hearts. 
The day Christopher died, Dr Cody told us that Christopher was like his own 
child & meant a lot to him. He called Christopher his "Little Miracle Baby." 
Later, he told us that on that day he went home & he cried. Still, 10 years 
later, we get together & have a meal with Dr Cody, on the anniversary of 
Christopher's death- we have only missed that date once because Dr Cody was out 
of town that week or something. I don't even have the right words for how 
wonderful having Dr Cody for Christopher's Dr meant to us. (What more can I 
say?) 

~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: "dncingqwn@xxxxxxx" <dncingqwn@xxxxxxx>
To: tri-med@xxxxxxxxxxxxx
Sent: Tuesday, August 26, 2008 10:39:02 PM
Subject: [tri-med] Re: Do tri 13/18 kids experience joy?

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


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

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