[tri-med] Re: please help me to decide (Edward's syndrome)

>>>>>>>>>>Hi,
I am a new member to this group.  I am from Malaysia.  I am 19 weeks
pregnant and I was told by my doctor 2 days ago that my baby is having
edwards syndrome<<<<<<<<<<<
 


Rohaizah 


So sorry you have need to find this group but glad that you did,  we did not
have prenatal diagnosis so we did not find out about our Rebecca's Trisomy
18 (Edwards syndrome) until she was a few days old.  She was with us for 14
yrs 7months and 30 days, and we miss her dearly ( I am crying already as I
type this)  yes at times it was hard work, and yes our family missed out on
some things others take for granted, but we also enjoyed things that others
never will and met wonderful people that we would never have had the chance
to meet.  Rebecca had a profound affect on everyone she met, a friends
daughter chose her career of working with infants at risk for developmental
delays because of her relationship with Rebecca. the same girl volunteered
with disabled youth and made all her friends do it as well.  I actually just
got off the phone with the lady from Easter Seals ( a charity here for kids
with physical disabilities)  and she was telling me that although she only
met Rebecca briefly that to her Rebecca was the face of every Easter seal
child to her and in fact Rebecca is the only child she features on her
bulletin board in her office, this woman also attended Rebecca's funeral
after only meeting her once.  Rebecca was a beautiful child with a beautiful
smile, she loved to be the center of attention and demanded it when she
wasn't :0)  yes she had a lot of issues, many medications lots of medical
equipment but she was loved and loved back in return. Rebecca did not walk
or talk, but she made her opinion know, she was total care with no real self
help skills but she could play with her toys and she almost always happy.
She had a full life traveled, graduated grade 8 getting an award for "poise
and graciousness" ( special ed class) she was also maid of honor for the
young lady I mentioned earlier.  Rebecca was also an ambassador for Easter
seals attending many events and 2 months before she died our family was
interviewed to be on the annual telethon  which will reair this weekend.  I
cant really help you with the question of discontinuing the pregnancy as I
was never faced with that difficult decision, I do believe though that
everyone has the right to choose what is right for them. At times I did
ponder what it would have been like to have a typical family but was happy
with the family I had. I can send you a picture off list if you like.


Susan mom to Rebecca t18m 06/06/91 - 05/02/06 and Mark age 13 1/2 ADD/LD


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

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