Tuesday, May 15, 2012

culture...


“They have culture”…what is culture…is it better then the culture I was born into…who’s culture is “right”, “just”, “fair”…I see culture being the world you grew up in and what you are accustom to…who is to say your culture is right or wrong…if a different nationality has a different culture…is it “better”…is it “right”…no I am not sure it is…in that so called culture I ask is my child deemed not worthy, unfit…is my child put away, shunned in a house away from society…and sitting in my living room looking at my child do you think that is ok…do really think that my child is not worth it…that my child is not worth the grief that people associate with having a child with extra abilities…the conversation began with wow you sure have a lot of kids in your daycare now…I respond yes I have to pay medical bills…oh yeah I did not realize you have to pay for them…yes her last stay in the hospital was $50,000 and every three week it is up towards $18,000 to have her esophagus dilated…so yeah we have some bills…insurance helps…but it does not pay it all…oh I guess you wish you lived in Japan…why I ask…because it would only be $15…I respond I bet they would not deem my child worthy of that kind of health care…I do not know that for sure…something I will be looking into because I am curious…he responds they do better now…they live together in a home…I look cross at him…so they do not think my child is worthy…he responds…well they have culture…no -they have hatred…they have ignorance…they have a culture based on only the fittest are worthy…thankful I live in America….he responds well its not like the Ukraine…I respond no maybe not but that is why we have to help the children get out…so they do not have a death sentence to a bed…they know…these children have a mind that works…and after this encounter…I ask myself is that what society thinks of my child…because she is expensive and there is an unknown on how she will develop that I should have her kept away…I should have killed her…it is heart wrenching to think that there is a population of people that do not deem my child’s life worth living…my child who will not become a menace to society…that will not be a drain on there taxes…my child is paid for…by us…instead of saving for our retirement we are saving for our child to live…I just do not get how anyone can look at my child and think she would not be worth it…that she would not be worth time, money, love, and a decent chance at life…why does a extra chromosome make a person cringe…why does a extra chromosome make a person think the worst and thankful they are not in my shoes…I get that a diagnosis can be tough…I lived it…but in the end it was and is the best choice I have ever made…keeping Maddie is by far my greatest accomplishment…anyone can mother a child everyone wants…only a few have the courage to love the unwanted…

4 comments:

  1. Ah, so well said Kim! It makes me sick when I read or hear comments from people who bitch and whine about how much our kids cost! Since when do we place a price tag on the value of some ones life?? Why does a dollar amount have to be attached to everything these days! Disgusting.

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  2. I try not to think about those they think my child would be less of a burden if she were not around. The kicker is that there is no guarantee "normal" people will not be a "burden" or drain of resources too. No one is to judge who is worthy, and just because many do not have an extra chromosome does not make them worthy by default either. I agree with Jenny...just plain disgusting and so well said by you once again.

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  3. The really sad thing is that nobody says that about expensive kids with other conditions. When Jack takes a hard fall it's an ambulance ride to a hospital 65 miles away at least 2 doses of Factor Vlll at $1000 each and a CT scan of what ever body part hit the ground, and most likely a night of observation in a hematology ICU. Easily $18,000 in medical bills. But nobody complains about how expensive hemophiliacs are. Nobody questions if they are worth that kind of expense. That you are having to put up with that stupidity makes me sick. I'll be the first to admit that I don't know enough to not be insensitive at times, but by what right does someone judge the worth of someone else's child? Amazing that they would think that is proper.

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  4. I am an English woman married and living in Japan. My 2 year old boy has Down Syndrome.He also had major heart problems discovered at birth and has had 4 operations (2 open heart) in his first year. I have never had any hint that anyone, doctors, city workers, health care administrators, in Japan would not deem my son worthy of all the health care he has recieved because he has DS. In fact the reason that I only found out that Sam has DS after he was born and not before was because the hospital I go to have a policy not to test for DS because the head doctor believes all life is worth it. I am actually glad that I am raising my son here in Japan because attitudes seem much more positive than they do in the UK. (But as having never raised a child in the UK that is just an opinion not a fact).
    I love reading your blog and have followed it for about a year, I love your open heart and honest opinions. I just wanted to answer your question about Japan with my experiences.

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