[tri-med] Re: ?? For William

Hello Penny,
 
Thank you for the welcome and the invitation for an introduction. I have seen 
pictures and learned about Devon even before Phoebe was born. My list serve 
membership has been on "vacation" for about a year. I did participate on the 
list a couple of times when Phoebe was at CHOP during the time of her cardiac 
surgeries; her mother wrote a lot more at the time. I have more recently 
restarted because I am taking a greater role in Phoebe's care. My wife has 
brought up a desire to institutionalize her at times, and well, our marriage 
has never been very good. Anyway, in the event of breaking up Phoebe is to come 
into my sole custody.
 
Yes, I knew about the Atlantic City family, and my wife did speak with the 
mother before and after their child departed. They were considering coming to 
the little regional fall gathering of SOFT families in Maryland organized by 
the Harpers in 2003. We attended 2003 and 2004 and have met other T13 families. 
The Pitts of NJ with their big girl Kimmy (> 20 years old), the Freiers of NJ 
(I had seen there angel daughter's pictures on the web and she looked so much 
like Phoebe), and another family from PA who had an angel T13 son - their 
surname escapes me. Also, there is the newly revealed Raphael-Alisca family in 
NY (daughter is on Therese Ann's site: http://www.livingwithtrisomy13.org - you 
can find out a little bit about Phoebe there as well.) Maybe I should ask her 
mom to join the list serves, so she can spend every spare moment trying to 
clear up her e-mail box too. I do read every word.
I have also received two pictures of a trisomy 13 girl (maybe 6 years old) it 
seems from a mysterious source in the Canary Islands - anyone know about these 
folks? They've written very little with the first picture, Spanish and broken 
English. I wrote back in English with Babelfish translations in Spanish with 
the hope of learning a little more.
 
By the way, I learned how to operate AB Dick offset printing presses by about 
12 years of age; my father had a few in the basement as well as a Davidson. 
Before starting my chemistry line of work I had a job at a place that had a two 
color Hamada as well two AB Dicks. The Hamada's not any harder than a AB Dick 
360 chain delivery with a two color head.
 
William, father to Philip (2000) and Phoebe [T13] (2002)
Central New Jersey, USA
 
"They that can give up essential liberty to obtain a little temporary safety 
deserve neither liberty nor safety." - Benjamin Franklin
 

Penny Victor <pvictor@xxxxxxxxxxxx> wrote:
Hi William :o)
I'm Penny...Devon and Nick's mom :o) Not sure if you're really new or if I 
missed it...but consider this my "Welcome to the family" :o) I was just 
wondering...Do you know/have you ever met the Langford's in Atlantic City??? 
They had a daughter...Mariah...with T13 who lived until she was 4 yrs 
old...she passed away over a year ago now...closer to a year and a half ago. 
They're really lovely people :o)
I'd love to hear more about Phoebe and Philip :o)
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.htm "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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                  Building ___ooOOoo__ Rainbows
                       www.trisomyonline.org
                  Families Helping Families On-line

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