[tri-med] Re: teasing

----- Original Message ----- 
From: "Fawna" <fawna33@xxxxxxxxxxxxxx>
Subject: [tri-med] Re: teasing


> Lara thought it over for a few minutes, and I was VERY disappointed to 
> hear her
> response of, "Yes!  Why don't we get rid of her?"


OK...now you've touched a point of worry for me that I've always kept quiet 
about.
When Devon was born..and we were given his death sentence, it always amazed 
me how much a 4 yr old Nick actually grasped.
He used to asked when Devon was going to get fun...and be able to DO things 
with him. I always tried to explain that we had to make our own fun with him 
because there were always going to be things that Devon would not be able to 
do. Nick was also always aware that Devon might pass away when we least 
expected it...or that a simple cootie/cold could turn ugle aand take him 
from us. We had to make sure he understood because of something he said to 
me when we were watching the helicoptor take off with Devon inside. Nick 
held onto my leg watching me sob and assure me with utter sincerity that 
"everything would be ok...Devon would be ok...he would make sure of it". It 
became very important that we make him understand that he was not 
responsible for Devon staying alive...that we would do everything we could 
to care for him and love him while he could be with us but that we might be 
allowed to keep him as long as most parents are allowed to have their 
children...and it wouldn't be anyone's fault if he passed away.
Nowadays...instead of "when is Devon going to get fun and DO 
something?"...it's..."MOM!...Devon won't stay out of my room....MOM! he's 
drooling on me!...MOM! he's got slimy hands again!...MOM! He won't leave  me 
alone!. He's not like Derrick and Kelsey with Kammie...Devon is a typical 
little pesky brother to Nick in many ways. But I worry that something's 
wrong because he's never been as affectionate with his brother as I know 
some are. Although...when Devon is sick...or having a procedure...Nick 
worries...even when I don't necessarily know it at the time. And heaven help 
anyone who says something nasty or mean about his brother. In elementary 
school when a kid that saw me taking Devon off the bus in his wheelchair 
when I picked Nick up...he told Nick at his first opportunity that "your 
brother is ugly!". Nick came home still fuming and told me he came real 
close to "cleaning that kid's clock!"...said he STILL may decide to!!! I 
advised him that that kid knew nothing about Devon and was just being nasty 
because he didn't know better. I used it to try and teach him why it's not 
acceptable or nice to make nasty comments to people just because they might 
be different.

BUT...I still worry because he's not as warm fuzzy as I see some are with 
their sibs :o(

Love,
Penny...loving & devoted wife to Joe, the best husband in the world...mom to 
Nick (15 yrs old...lover of Fishing, Dragons, Turtles, Yu Gi Oh, 
RollerCoasters, Chocolate Icecream w/ Ovaltine sprinkles, Devon (10 
yrs...lover of Barney, Blue, Nappy ol' Bear w/dreadlocks, Elmo, & food in 
general...Full trisomy 13 w/balanced translocation 5 and 13) , and Trooper 
the Wonder Dog...our 9 ? year old yellow lab adopted from FL Lab Rescue 
12/13/02 :o)
Please visit the webpage my wonderful friend Karen made for me on our 
trisomy listserv at...http://www.trisomyonline.org/victor.htm
AND...Devon's moment of glory in Exceptional Parent Magazine...
http://www.eparent.com/familiarfaces/ffaces_4_01.htm
AND...see our 3 boys on FL Lab Rescue's website at:
http://www.labradorrescue.net/success/index.html (Look for the name Trooper)
AND :o) http://livingwithtrisomy13.org/album9.htm
AND http://web.coehs.siu.edu/Grants/TRIS/
"The stone that the builders did not want became the cornerstone." (Psalms 
118:22) 


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

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