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Post by YoshsMom on Jun 10, 2004 18:39:01 GMT -5
After reading through the posts on hurt feelings, one of which was mine, I felt the need to hear about all the good stuff people have said and done for us.
When we first learned our child would have ds, I was still pregnant. The day after I told my family, my sister went out to buy kids books and videos about special needs kids to teach her 3 boys about the wonderful cousin they would soon have. Yosh wasn't even here yet, and they were already cherishing him.
I would love to hear what people, family or otherwise, have said or done that touched your heart the way my sister touched mine.
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Post by Debbie on Jun 10, 2004 19:23:46 GMT -5
I guess the positive things that happened to me was simply the pure acceptance I received in my family. My sister said she just saw me, Debbie, her sister, and that was how she saw me and still does.
I have been told I am a gifted poet and writer. I sometimes doubt that but, these words have made me feel positive about myself and what my talent's are.
One person who is continuiously postive for me is Jackie D. She always tells me that and it makes me feel good! ;D She is a wonderful person and is very talented as an artist besides being a great mother!
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Post by victday on Jun 10, 2004 20:01:01 GMT -5
I stopped by to visit my obstetrician just because I was in the same building (for Victoria's eye doctor appt) when Vic was about 10 months or so. The doctor had not been concerned about the limited clues pointing toward t21 while I was pregnant and urged me to skip having an amnio (so as to avoid risk to the baby) after I answered his question as to what I would do with any results; for that I am glad after hearing about the experiences of many other people who were pressured the other way.
So when I stopped by to show Vic off, the grandfatherly, Egyptian (I think) man said "you are a good mommy" and told me that "these are the fun ones," and winked at me, as if the other ladies in the waiting room might not agree but WE knew the truth. When I told her how well Vic is doing he said, "That's because you are a good mommy."
It made my day, week, month, year... you get the idea!
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Post by Emilysmom on Jun 10, 2004 20:07:47 GMT -5
The most positive reaction that sticks out in my mind was from my husband's mom. We called her while I was in the hospital.....after having the test to see if Emily had Ds (3 weeks before she was born), and while I was having IV meds to stop the premature labor the test started! I was so scared that we had deliberately put Emily at risk by simply wanting to KNOW. While I waited in that hospital room, I phoned Terry's mom and told her what was going on. She said "Oh Susan.....you KNOW we'll love her no matter what, and we'll help you in any way we can". Terry's sister immediately went out and bought the book "Babies with Down syndrome" and it arrived just a couple days later. It was immediately obvious to us that his family adored Emily.........no apologies, just plenty of LOVE. That has continued throughout the years. Knowing that they love her without an ounce of pity is such a blessing!! Susan
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Post by Claire on Jun 10, 2004 21:12:24 GMT -5
Sorry can't really say much family support but we found great support through friends. Like they say you can't choose your family, but you can choose your friends. My best friend who is an EA, worked with Adam as a one on one worker for 5 years. One hour every day. She was still in school, had 3 kids of her own and never gave up on Adam even when I have to admit that I sometimes felt like it. When we were told he may never walk without assistance and he got his first walker I was a little devastated. So the next week when the therapist came in my friend came over and cut her off before she could go on and on about Adam's low muscle tone and said. " Sorry but Adam doesn't know how to read yet, so he hasn't read your book, so if you don't tell him he can't walk he won't know he can't" That was the smartest thing someone could have ever said. Now Adam has surprised them all, even thouhg he did use the walker until he was 5 he is now running, jumping and going to the park like anyother kid. Actually I need good shoes to keep up with him now.
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Post by jennabreeze on Jun 11, 2004 1:44:39 GMT -5
we were lucky. we had so much positive support from our family and friends. the one thing that sticks out though was when my nephew, who is 11, met chloe for the first time when chloe was around 6 months old. my sister had explained to her kids that chloe has ds. they were pretty interested, even asked if it was because she was born at home so when mitch first saw her, i was amused to see him really checking her out. after a few moments, he said, "i don't think she has what you say she has." i think he may have been expecting a baby that was really different than other babies. instead he saw a cute little baby. i am looking forward to seeing my nephews and neices grow up with the experience of having a cousin who can teach them that kids with ds are more like other kids than different from them.
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Post by meghans_mom on Jun 11, 2004 13:09:53 GMT -5
i can think of a few...but we haven't had any really negative reactions - but the good ones that stick out in my mind are... my sis-in-law after finding out, contacted the NDSS and had a new parent packet sent to me. It might not sound like much but I was very touched...she and I never got along for years but now that we are both parents things have changed for the better. the other, is one of my best girlfriends...I wasn't able to tell her during my pregnancy about MM's DS - my friend is very sweet but a sort of clueless, self-centered soul, and i don't think i was prepared to deal with her. several weeks after MM was born my hubby went over and told her and her husband about MM. The next day she called and asked to come over and we just hung out and played w/ meghan - we didn't talk about it, but she was just there. she didn't say she was sorry for me or anything...she was just there, silently giving me support. I think sometimes I don't give my friends enough credit :-D I don't know how I would have reacted had the situation been reversed, I'm not much good at knowing what to say, or what not to say -- but what my friend did for me that day was perfect for me! again, it doesn't sound like much but it meant alot to me. overall, everyone in my family has accepted Meghan 100%, i have one family member who has never discussed it with me, or barely even mentioned it...which bothers me a little - but I think he just doesn't know what to say (when he doesn't really need to say anything at all). We're not such good talkers in my family. but i know that he adores meghan too, and i think is sometimes a little surprised at how well she does do! And although I didn't appreciate it in the beginning...i met several moms and grandmas who would come up to me when they spotted meghan. at the food store, at the baby store, at the diner. they wanted to show me pictures of their family members, and share stories of successes, etc...and at the time, i just didn't want to. I'm a pretty private person and super shy to boot so i just never knew how to react. but in hindsight, i wish i had been more open to experiences like those... well - i guess i'm getting a little off track now :-D thanks everyone for sharing your thoughts and experiences. laurie
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Post by lindy on Jun 11, 2004 14:14:36 GMT -5
I have had way more positive reactions than negative ones. Especialy from people I don't know.
One that stands out was this older man was behind us at the grocery store, and he was just so nice. He told me about his daughter with DS who did something with the Olympic torch? It was a while ago I can't remember exactly.
Then once at the same grocery store I noticed everytime I passed this couple they would smile and wave to Jenna. The lady finally stopped me and told me how beautiful Jenna is and how they had a granddaughter in California with DS and they missed her so much.
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Post by updowns on Jun 11, 2004 19:31:08 GMT -5
We were advised by the hospital to let our family doc know the situation. When Sarah was about a week old and still in hospital, Dave went to surgery to tell her (she had already heard the news through the grapevine) and the first thing she said to him was "Congratulations on the birth of your daughter" - she was the first person to offer congratulations and we were both so touched.
Another one that stands out was when I first met my best buddy. Sarah was 2 at the time and we had just become neighbours, she has a daughter the same age as Sarah and I stopped one day to welcome her to the area. We discussed our two girls and the fact that they would be going to the same preschool. We started having coffee together etc. and one day, soon after we met, she asked me if I had any books about DS and could she borrow one as she wanted to learn - I was so touched as it dawned on me that she was the first person to ever ask me that and that she cared enough to want to learn. That was 10 years ago and we are still the "bestest of buddies".
Stella
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Post by christie on Jun 11, 2004 23:19:08 GMT -5
For me it was my brother walking into my hospital room with a bunch of flowers and walking right up to me, and said CONGRATULATIONS Christie you guys are the first of the siblings to have a beautiful Baby Boy ;D My boss at the time came to the hospital and said he had just gone to see Chris in the nursery and there Chris was upfront center and was just the most adorable little baby ;D We talked and when I brought up the DS, he just said to me, Christie you know ALL kids have different issues one way or another, you just know now and therefore can get the help Chris needs. There are a few others that were GREAT and I love them all for that... BUT the one that stands out the most to me was our 11 year old neighbor. It was the first night Chris came home from the hospital and Tony came over to see Chris and he just looked at me and said "you know I have some delays cause my Mom drank when she was pregnant with me, and look at me, I turned out ALRIGHT, sooo give the little guy a chance and just love him" OMG I tell you guys, this 11 year old was a true God Send CC
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Post by Jenifer on Jun 11, 2004 23:53:48 GMT -5
I called a good friend shortly after Joy was born because I just needed to cry on somebody's shoulder and didn't want my husband to be the one to bear it. He was doing his own amount of dealing/grieving, after all.
When I told my friend how sad I was about Joy's diagnosis, she said words that saved my life. She said, "Joy has a disaility, but she is so awesome. You waited so long to have her and she is a gift."
More perfect words could not have been said to me. My whole perspective was changed.
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Post by steffipoo on Jun 12, 2004 1:02:55 GMT -5
OMG my first memory of positive love was from my sister. I WILL NEVER forget her words. It was about 16 hours after I had Olivia. I had finally gotten the "she definately has ds" from the rude geneticist at the hospital, "but she's cute THOUGH." grrrr. I picked up the phone and called my sister who unbeknownst to me already knew(seems I was the last to find out). I said CAREY (bawling my eyes out) Olivia has DS... She started to BAWL I MEAN BAWL and said... "STEPHANIE we love OLIVIA SOOOOOOO MUCH ALREADY.Bring her home and lets hold her and LOVE that beautiful girl. I LOVE HER SO MUCH STEFF... BOY what a tearful conversation. BUT the best... I get positive comments from people all the time I really feel blessed to have such a lovely neighborhood who have taken on Olivia as their own. The clerks at the store will even help me if Olivia is getting out of hand.Even virtual strangers will help its amazing what our world has become. I remember on grammar school(I'm 38) there was a kid who had a party at his house and I met a bro of his with ds who we never even knew existed. Seems to me like everyone, at least around here 30 some odd years ago, his their kids with ds or with cp etc. WEIRD HUH? now sheesh the whole town knows Liv strangers will say HI OLIVIA and then they will tell me they met her like on a field trip to the farmers market etc, I have met more people thru her.. LOL. VERY FEW NEG EXPERIENCES and the positive ones just overshadow the negative anyhow.. (((HUGS)))) great ? steff
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Post by steffipoo on Jun 12, 2004 1:09:57 GMT -5
oh yea one more... but first in my last post I meant HID their kids with ds cp etc.
WELL about a week after Liv was born I had yet to go home.(we stayed at my moms) WELL we lived in the dark beautiful rustic canyons.WELL for 2 nights after we got back I would put them to bed then go outside and cry cry cry.... WELL my across the street neighbor must've been watching me. The 3rd night the little girl who was 8 came over held Liv looked me straight in the eyes as if to say she's beautiful you dope and gave me a letter and a DOLL she made for 2 days just for Olivia.I have it here and am looking at it now. She showed me a lot that night and her letter was so grown up and loving for an 8 year old ...
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Post by rickismom on Jun 12, 2004 17:00:53 GMT -5
My family was basically supportive, and friends too. But the thing that stands out was when Ricki was 2 years old. I had taken her to the ear doctor. On the way home (by bus) she was TERRIBLE. (Not her fault; it was late and it took a while.) I walked into the house exhausted. As I took the referral for a hearing test out of my purse, to copy the phone number of the clinic he recomended, I noticed the "diagnosis" entry: " cute girl with DS"
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Post by Sammy on Jun 12, 2004 22:44:27 GMT -5
My sister to whom I am very close found out she was pregnant after a 13 year span since her first two children. Shortly after her surprising news I found out I was expecting again also. Her baby boy was born healthy and happy and 5 weeks latter Christopher was born with DS. She siad to me I didn't understand why God had chose to send me another child after so many years, but now it is so clear He knew Christopher, would need a life long friend. God is so good!
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