[tri-med] Re: Teasing

----- Original Message ----- 
From: "Sue&Glenn Hardy" <hardyboyz@xxxxxxxxxxxx>
Subject: [tri-med] Re: Teasing


, that said I really find that having Bec or any child with  =
> a
> major disability is isolating, not because people want to exclude you =
> but as
> the child grows and things become difficult due to weight and
> mobility.............
>

I agree Susan...the 1 or 2 good friends we DO have don't always understand 
how daunting it can be packing up our trier and hauling them somewhere :o( 
They just think we should pack em up and bring it on :o) Something I'd 
really like to do sometimes but it's just too much sometimes...and when the 
kid is mobile and legally blind and with no sense of personal space or 
safety...taking him places can be really tough...just easier not to :o( Call 
me lazy but just getting silly boy on the bus in the morning hurts me 
physically. My neck, my lower back and sciatic nerves (both) and my right 
shoulder are in constant pain everyday.
And if you turn down an invitation often enough...pretty soon they stop 
inviting you...they get tired of hearing your "excuses"...even if they ARE 
valid ones. Sure we invite them here...but that can be hard for them to do 
too...so we don't have alot of company....
We're sooooo looking foward to Pam and Kira coming...but ask Pam...I'm still 
worried about perceptions, impressions, etc...Trying not to worry about the 
condition or our house...and hoping they won't mind getting climbed on 
rasberried on and dragged all over the house :o) But still I'm very excited 
:o) Already warned Pam to forewarn Kira to be on the defense in case arms 
start flailing or in case Devon sits on her :o) I think we'll have fun 
though...and Pam and I are BOTH talkers...we may never sleep!!!!!

Love,
Penny...loving and devoted wife to Joe, the best husband in the world...mom 
to Nick (14 yrs old...lover of Dragons, Turtles, Yu Gi Oh, RollerCoasters, 
Chocolate Icecream with Ovaltine sprinkles, Devon (9 yrs...lover of Barney, 
Blue, Bear in the Big Blue House, Elmo, Garfield and food in general...Full 
trisomy 13 w/balanced translocation 5 and 13) , and Trooper the Wonder 
Dog...our 8 or 9 year old male 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 handsome boys on FL Lab Rescue's website at:
http://www.labradorrescue.net/success/index.html (Look for the name Trooper)
AND one more now :o) http://www.thehealingpowerofprayer.com/album.htmLove,


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

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