Re: thinking out loud !! Long response

[Guest guest]

I so agree with everyone! But this is my argument and my take on the subject.

I've been asked to talk to people, I've been asked my opinion on it, it always

comes up, it is a subject that will surround us probably for the rest of our

lives, sadly. Its become a passion for me, as I feel sometimes that it is my

responsibility to make this look easy and fun, so someone looking at me in the

distance isn't saying, " oh boy, I don't want that problem. "

I don't know whether is high functioning or low functioning. I think she

is middle functioning. LOL. Anyway, I agree it doesn't matter, our kids are our

kids no matter what, and whatever they accomplish is amazing as well as it is

for our " typical " children. I have two others and when they do something well I

am so proud and happy, my middle child is so talented I find her amazing, and at

the same time is extremely difficult! Yep, its different, because some things

are a given, talking, walking, reading, writing, jumping, etc. But not always.

When I talk to people about this, I kind of lean in the direction that when you

are pregnant or thinking about getting pregnant, you better understand the

reality of humanity - people aren't perfect and you are going to give birth to a

person. I have three girls and every one of them bring problems into my life.

Some of the problems our kids with Ds bring are different, and some are the

same. In some ways parenting has made me a better parent to the others,

or shall I say a wiser parent. How many people have brought beautiful " perfect "

kids into the world only to lose them to childhood cancer? How many have turned

out to have autism, are drug addicts, alcoholics, bullies, have mental or

intellectual disorders, become disabled in an accident, etc, etc. Ted Kennedy

had a typical child and the same child is a disabled adult - due to bone cancer.

I didn't know had Ds. I refused testing. I think the test itself calls

out to people (tragically) that Ds is the worst thing that can happen, I mean if

it isn't, why are they testing for it?? As has been said, many seemingly

" typical " people are a burden on society. If you set out to be a parent, you are

setting yourself up for whatever happens next. You open yourself up to being

hurt no matter what! It used to be that people had children because it was the

next step in life, and you had them to give yourself to something - a vocation -

life calling. Now the focus is on what the child will give to me, myself, the

child is coming to make my life better to give me love, make me proud. Children

aren't born for us they aren't toys or appliances! But that is the thinking in

the world we now live in and it is sad. It is why abortion exists. But it is a

" false promise " .

**An important story. Just before if found I was pregnant with , a

relative had a friend that was surprised by a pregnancy late in life. She wasn't

even happy to be having a baby at all, so agreed to be tested. Her test included

an amnio, as the blood test was suspicious. She had the amnio, all was well.

When the baby was born, he only had one eye. The other eye was missing.

Everything was as though his eye should have been there. No one knew why he was

born without one of his eyes. Because the eye was missing, she had to have him

fitted for a glass eye at around age two. He had to have MRIs and some other

tests to ready him for his glass eye. In doing these tests, they found that the

eye should have been there and that it looked as if it was there at one time,

how could he have lost an eye before birth? The only conclusion was that it had

to have been sucked out during the amnio! This baby was only a few months older

than when I heard this it just sent chills through me. While this Mom was

busy making sure her baby was perfect, put him through a test that likely caused

him to have a disability, disfigurement, and several surgeries in his lifetime.

Kind of makes you think, doesn't it?

I would love to say to people that even talk about eliminating Ds, if you are

looking for a perfect child, you need two perfect parents to make one?? Sorry,

I guess I'm standing on a soap box again. I hardly ever post but when I do, I

find I'm making a speech. Sorry.

All three of my kids are perfect and so are all of yours. As perfect as a humans

can ever be.

Bonnie - SAHM to 13 ADD, ?ODD?, my future star, and 9 Ds, ADD,

CHD, GERD, Alopecia Areata, AAI, behavior isssues, Hypothyroid, some new eye

problems and my #1 reason to smile. I'm also Mom to grown up and on her own,

26 ADD,LDs.

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> >> I am not sure what I am trying to say here so please dont jump on me if I

> >> dont word it correctly.

> >>

> >> I read a lot of stories like this one about having a child with Downs

> >> syndrome and sometimes I actually get depressed from reading them. Its

> >> sometimes seems that its all about how close to " normal " some of these kids

> >> are .

> >>

> >> I really do think any achievements by any of our kids are worthy of

> >> shouting from the rooftops about believe me but I just think sometimes

that

> >> the media seem to latch on to the " nearly normal " kids for there

stories.

> >> Its like if the kids are " nearly normal " then they are worthy of being

> >> wanted or are more acceptable. I dont like that .

> >>

> >> I have read a few stories of people who say ok my child is not top of

> >> the class in anthing but he/she is still living a full and wonderful life.

> >>

> >> I also hate the " these less able kids are a burden on society " and

> >> maybe thats why the media jumps on the near normal approach . I always

> >> counter with " so what if he is ?? " I pay taxes so does all his family and

> >> so probably will he and if he does not so what ?? People who smoke and

drink

> >> to excess and take drugs and who are unemployed or who become diabled due

> >> to disease or accident could all be burdens on society . Should we send

> >> out hit squads ????

> >>

> >> I adore my sons uniqueness and diference and I dont strive for him to be

> >> normal. I strive for him to be independent but thats more because

society

> >> says our kids should be. Other cultures would just happily look after

the

> >> less able kids and adults as the norm. I strive for him to live as a full

> >> a life as possible no matter what that is .

> >>

> >> I suppose I just want to say its not all about what our kids can do and

> >> cant do . Maybe its just because I forget how scary Downs syndrome can be

> >> from the outside .Maybe at the end of the day its how you relate to these

> >> storeies based on our own experiences with your child. Sam is not one of

the

> >> typical " success stories " and I dont want his worth dimished because of

> >> this. This is how God made him.

> >>

> >> Normal is like Easter, a movable feast :-) .

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