[tri-med] Re: teasing

You know Penny even if Devon were your "typical baby brother" (I hate to use 
the word TYPICAL because I find our children all the same)  Nick may be the 
same way with him.  Maybe he's just not the kind that would be huggy or mushy.  
He will most likely be the big brother that in the end takes care of Devon.  
I'm sure his heart is all for his baby brother.  I've read your emails and you 
and Joe are awesome examples of how well Devon fits into your family right 
along with Nick.  Be proud girl you're raising great children.
Tracy mom to Cody (Trisomy 9)
-------------- Original message -------------- 
From: "plugginalongpv" <plugginalongpv@xxxxxxxxxxxxx> 

> ----- Original Message ----- 
> From: "Fawna" 
> 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 
> 

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

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