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

Kandy,

I just love this, it brought tears to my eyes this morning.

At 06:13 AM 28/08/2008, you wrote:
>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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>Version: 7.5.524 / Virus Database: 270.6.9/1636 - Release Date: 
>26/08/2008 7:09 PM

Jocelyn, wife to Frank, loving Nanna to Tess with Trisomy 18, age 11 
years, and four other beautiful grandchildren,
  living in New South Wales, Australia
. 

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

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