[tri-med] Re: Not posting/belonging

 
Ceci, 

 Thank you!! And once again...I don't post because i truly know so little
andwould be fearful of giving wrong information. But I do read everything
andjust continue to learn. 

Karen, grandma to Julian 4 years old, mosaic partial trisomy 1


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From:  loganfamily <loganfamily@xxxxxxxxxxxxx>
Reply-To:  tri-med@xxxxxxxxxxxxx
To:  tri-med@xxxxxxxxxxxxx
Subject:  [tri-med] Re: Not posting/belonging
Date:  Thu, 28 Jun 2007 18:58:12 -0400 (EDT)
>
>
>-----Original Message-----
>>From: John and Ceci DeGenova <jcdegenova@xxxxxxxxxxxxx>
>>Subject: [tri-med] Re: Not posting/belonging
>>
>>When we first found this list back in the spring of 1998 while we were
>>pregnant with Anna, I couldn't believe my good fortune in finding others
who
>>had "been there, done that", or were going through what we were going
>>through.  It was great to have a place to ask questions, but even more
>>importantly, read about the children who survived, the ones who were
making
>>it despite the odds.  I have to honestly say that it never occurred to me
to
>>think that one child was "luckier" than the other because they were
mosaic,
>>or didn't seem to have the urgent medical concerns as another one.  I felt
>>like we were all in this together, and it wasn't fair that any of our kids
>>were inflicted with these concerns, no matter what they were.
>>
>>For those of you who feel guilty about posting achievements, let me tell
you
>>that it was those postings about your child's milestones, no matter how
big
>>or how small, that gave us hope.  They were a beacon of light for us
during
>>a very dark time when the medical community was telling us there was no
>>hope, no light.  They taught us not to give up on Anna, that there WAS
hope,
>>even though the odds were against us.  Please don't stop posting these
>>achievements and the next time you hesitate, please think of me and
remember
>>that you are not bragging...you are offering hope!
>>
>>Unfortunately, Anna stayed with us here on earth for far too short of a
>>time.  And it's been 8 1/2 years since she died and I'm still here.  Since
>>Anna gained her wings, I have been responding to posts less and less as
time
>>passes.  However, I read them all, laugh and cheer with the achievements
and
>>cry with the pain.  I, too, don't respond many times because I have no
>>experience with it.  And, many times, like this post, I don't quite know
how
>>to put my thoughts into words without sounding like the village idiot!
>>Sometimes, I just have to put my fears aside and type.
>
>Ceci,
>Wow, your post made me smile and tear up at the same time!
>
>
>Chris
>wife to Pat, mama to Dalton 15yo, Darby 12yo, McKensie 11yo, and Mari 5yo
(full T18, dob 8/24/01 &The only one who always likes me....unless I'm
tryingto wipe her nose)
>Tipp City, OH  USA
>http://pg.photos.yahoo.com/ph/misstippcity/my_photos
>http://home.earthlink.net/~loganfamily/id1.html
>http://www.benotafraid.net/story.asp?id=38
>http://web.coehs.siu.edu/Grants/TRIS/
>www.trisomyonline.org
>www.trisomy.org
>                   Building ___ooOOoo__ Rainbows
>                        www.trisomyonline.org
>                   Families Helping Families On-line
>


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