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Post by momofjordan on Jun 9, 2004 23:58:33 GMT -5
Oh my gosh. I can't believe this post is here. I was at story time with Jordan and the library today and there happy to be like 6 mom's that were pregnant. We were all sitting waiting for the little lady and they got a closer look at Jordan and you should have seen the horror in their faces when they realized that he had Down's. The look of "OH MY God... my baby better not have that, or I would die if my baby had that". I wanted to punch them all in the face but... we just sat and enjoyed the time.... I do not see how anyone could look at my beautiful son and see anything but a blessing....
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Post by lindy on Jun 10, 2004 9:08:15 GMT -5
Wow, I hope that I never have any experiences like some of the ones you all have had. I have a temper!
The only thing I can think of is a few weeks ago we were at a company yard sale and a lady there was talking about Jenna. She was being pretty nice but it was obvious that she knew nothing about Down syndrome. Then she used the "mongloloid" and I aaalmost lost it. I told her that that term wasn't used anymore, and she said she still used it. She said that Down syndrome sounded to technical... I told her if she wanted to be real technical she could call it trisomy 21.
I just try to remember that these people just don't know any better. Of course they don't have to be so rude about stuff either.
I was reminded of this little story thing while I was reading it...
God Chooses A Mom
Most women become mothers by accident, some by choice, a few by social pressures, and a couple by habit. This year, nearly 100,000 women will become mothers of handicapped children.
Did you ever wonder how mothers of handicapped children are chosen? Somehow I visualize God hovering over Earth selecting his instruments for propagation with great care and deliberation. As he observes, he instructs his angels to make notes in a giant ledger.
"Armstrong, Beth; son; patron saint, Matthew.
"Forrest, Marjorie; daughter; patron saint, Cecelia.
"Rudledge, Carrie; twins; patron saint.... give her Gerard. He's used to profanity."
Finally, he passes a name to an angel and smiles, "Give her a handicapped child."
The angel is curious. "Why this one, God? She's so happy."
"Exactly," smiles God. "Could I give a handicapped child a mother who does not know laughter? That would be cruel."
"But has she patience?" asks the angel.
"I don't want her to have too much patience or she will drown in a sea of self pity and despair. Once the shock and resentment wears off, she'll handle it. I watched her today. She has that feeling of self and independence. She'll have to teach the child to live in her world and that's not going to be easy."
"But, Lord, I don't think she even believes in you."
God smiles. "No matter. I can fix that. This one is perfect. She has just enough selfishness."
The angel gasps, "Selfishness? Is that a virtue?"
God nods. "If she can't separate herself from the child occasionally, she'll never survive. Yes, there is a woman I will bless with a child less then perfect. She doesn't realize it yet, but she is to be envied. She will never take for granted a 'spoken word.' She will never consider a 'step' ordinary. When her child says 'Momma' for the first time, she will be present at a miracle and know it! When she describes a tree or a sunset to her blind child, she will see it as few people ever see my creations.
"I will permit her to see clearly the things I see - ignorance, cruelty, prejudice - and allow her to rise above them. She will never be alone. I will be at her side every minute of every day of her life because she is doing my work as surely as she is here by my side."
"And what about her patron saint?" asks the angel, his pen poised in mid air.
God smiles. "A mirror will suffice."
Erma Bombeck
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Post by Robin on Jun 10, 2004 13:17:55 GMT -5
OMG......have I ever had my feelings hurt, yikes, it started the day the dr came and told me I had a mongoloid!!! It seemed to happen alot when Chase was smaller but since he was about 6 or 7 it hasnt happened much at all because for one if my brat boy sees people looking at him, he is on them in a second! Hi there, what your name, me Chase, this my mom, yada yada, LOLOL he just keeps going, and it is a life saver as it doents give people time to say any thing rude anymore or stare:D And I think it was Jordans mom who said, it gets easier with practice, LOLOL, she is sooooo right!! I have learned to bite my tongue, yikers, I still get all red and feel hot when I think of the lady I tore into at Target's and the whole store could hear me, LOLOLOL, not only was she horrified but I was so embarrassed by my uncontrolled anger after I thought about it!!!! But to those of you who have kept it together and made the person feel like a little toad, YEAAAAAAAAAAA for you!!!! (and really, it truely does get easier the older your child gets) huggers, Robin
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Post by victday on Jun 10, 2004 19:29:37 GMT -5
While my daughter was less than one day old (and she was not in the hospital room at the time but down the hall for some reason) a pediatrician I had never met before came into our room to discuss with me and my husband the possibility of trisomy 21. She said, "Let's see - you guys are pretty old, right?"
Maybe that has something to do with my feeling (for the last year or so now) that I am getting pretty old. (I don't feel any different than ever, and I have a pretty young attitude; always have. I just wonder now if I have "OLD" stamped across my forehead or something.) I had just turned 36 at the time and my husband was 41. It's true that his hair is pretty gray, but really - was that comment necessary? I don't think either of us answered that rhetorical question.
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Post by Debbie on Jun 10, 2004 20:01:31 GMT -5
I think that was a very improper comment to make. I suppose she was trying to find out your age but, still, I think she was out of line. I am not a parent and you may not want my opinion since you might want a parent's opinion instead.
I feel old sometimes myself. I am only forty three but, at times I feel much older and then I feel younger at other times. Strange, isn't it? ;D
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Post by victday on Jun 10, 2004 20:07:37 GMT -5
Hi, Debbie! I just read your post in the other thread and I do think you are a talented writer, so don't doubt yourself!
You are totally right that it was the most unthinking, tactless comment I've heard in a long time. That woman's lack of social skills really astounds me. I am glad that we do not go to her (she is affiliated with the company that employs our pediatrician but she works in another office not in our neighborhood, thankfully!)
Of course I am always glad to get your opinion. My husband is now 43 like you, and he does not feel or act old. Well, sometimes he says he is getting old because his knees hurt but that has everything to do with the pounds he needs to lose and nothing to do with his age! And he's had gray hair since before he was out of high school, I think. Maybe that doctor will get some sort of karmic payback when someone makes a comment about her, like a salesclerk in a clothing store saying something about her sagging butt or something.
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Post by carolyn on Jun 10, 2004 20:08:43 GMT -5
Okay- so I have a weird take on this, but here goes. When I get the "look" or the rude question, or especially when I read a post like Barbs (Alisonzmom) I suspect that person was one of the many who choose to abort a DS baby and when they see how happy and well adjusted we all are, they feel guilty, and feel the need to assert themselves that they did the right thing. I feel so sorry for those who made such a choice based upon old outdated information, when had they looked around and did their own research they would have seen the truth. I think this ties in so closely to the thread about "how severely is your child affected" because there is such a misconception of what children/people with DS are like and are capable of. I really think the medical professionals (ob/gyns) are years and years behind in their thinking. We all know that the data is old, made when this average DS person had spent their life in an insitution- We all know that most kids with DS are mildly to moderately cognitively impaired. When people say "oh John must not be severly affected" I just say he is average for a kid with DS.. Most are like him.
Honestly, I regret the tears I shed in the beginning. Different is not bad or wrong. He is a person, a unique individual not a statistic.
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Post by Chris on Jun 10, 2004 21:18:01 GMT -5
Debbie~ You are so right! I am sure that God created Sarah with Ds for a reason. I don't believe her Ds is an accident. She is only 2 but has brought so much joy into this world. When I was pregnant, the mother of my daughter's best friend kept insisting that I be annointed with oil and prayed over by a healer. She was sure that God would cure my unborn child of Ds. I tried to explain to her that my baby was created with Ds and it wasn't a mistake. I did pray for God to heal her heart defect but not the Ds. Sometimes I don't understand why Sarah has to go through so much (heart surgery, continuous upper respiratory infections, blocked tear ducts, fluid in her ears, low tone, loose joints, etc) and it is heartbreaking when she works so hard to do what comes so easily for other children but I don't know any other child who loves unconditionally, accepts everyone and is so forgiving. She is one happy kid who knows she is loved. Chris
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Post by donnac on Jun 11, 2004 8:01:56 GMT -5
I had some problems during my pregnancy in 1993, and knew something was wrong during weeks 10 and 11, had my amnio at week 15, and at week 17 knew that my son had Ds. My obgyn rotated with 3 other drs. in his practice in case one of them had to deliver, so that all of his patients would know the other drs. After the diagnosis, I saw one dr. for the first time, and he had wonderful things to say about a child that he knew that had Ds. The next month, I went in to see another dr. While talking to his nurse, her jaw dropped when I told her that the baby had Ds, and I needed the dr. to write a prescription for a fetal echo. Well, I'm lying on the table waiting for the exam and the dr. that I'm meeting walks in. He doesn't ever look me in the eye, but he does say, "In light of the situation, do you wish to continue with this pregnancy?" I said, "Yes," and held it together until I left. I knew then that he would definitely NOT deliver my child, and that I would never let him examine me again. I just happened to be over 22 weeks pregnant at the time (and, as I mentioned above, I knew something at week 10, and knew definitely at week 17that he had Ds). Even when I first met my genetic counselor around week 12 or 13, I told her not to give me "options" because there were none, just help me find out what is wrong, and lets do everything we can to have a healthy baby. And, as we all know now, there really was nothing wrong, just something extra!
Donna
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Post by Kristen on Jun 11, 2004 12:39:17 GMT -5
I have not said much lately, but you girls have guts! I have not gotten any really bad remarks that I can think of (I would remember) but more like people trying to say the right thing and sounding mean. THose people I blow off. They're trying, at least, to be nice. I have too much of a temper to toerate blatent idiocracy.
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Post by Jenifer on Jun 12, 2004 0:14:25 GMT -5
I can't say that I've ever heard anyone say anything bad about Joy. People tend to gravitate to her bubbly personality, and I get stopped often by folks who know someone with Ds and just have to tell me how much that person means to them.
I do deal quite often with people at work using the "R" word, even though they know how offensive it is to me. I try to remain professional, but one time in a meeting someone I was really close to said it and tears just started streaming down my face. I felt this woman really cared about me and she threw it back in my face. I haven't trusted her since.
I was reading Jackie's post on the first page about how she's sometimes sad when she sees Emily's friends getting married and such. Last weekend I was at a wedding and I heard the song "Butterfly Kisses." I hadn't heard it in years and I got so sad as I listened because it's a story I probably won't live with Joy. I am proud of my daughter and she is so wonderful, but sometimes those bitter feelings of loss creep in and catch me off guard.
Just my two cents worth...
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