The Firestorm Continues
As one of Ben's parents I am shocked and angry at the many responses to The Ashley Treatment. The responses are for the most part uneducated and imbecile. Evidently the American public buys into the corporate media accounts of stories like this one. The villain is identified and the public begins their collective judgment of the individual (plural in this case) has begun.
The only thing I can say at this point is that my heart goes out to Ashley's family and I hope to God they are not reading the crap most people are saying about their parenting abilities much less the thoughts in regards to their decision to improve Ashley's quality of life. The ONE (and I mean only one blog post I've read) from a parent of a severely disabled child that is against their decision at least admits that the American people have failed in caring for it's most indigent.
Most of you who will read this bitch about taxes. You bitch about Uncle Sam intruding upon our private lives. You bitch about parking at the malls during Christmas. You bitch about colds intruding upon your family gatherings. You bitch about everything.
Okay, I'll admit to doing the same. But I come home and sit in front of an individual that has never bitched about anything other than the many needles that his body has been stuck with. I sit and look at his smile and say, "Thank you, God. I've had one more day with my son." How many of you have this conversation? Everyday?
You who sit in judgment can always expect the homecoming of your loved ones. You can expect your children to go on to college. You can expect your lives to be just like those pretty ads on TV or on the internet and you'll live happily ever after. Meanwhile there are families like us that are goddamn thankful our son wakes up each morning. We are thankful he can go to school some days because the latest virus isn't putting classmates in the hospital. And for some unknown reason Madison Avenue never puts our pictures on a billboard.
As I said at one site today, we are now the silent minority. We're silent because we are too busy changing diapers, priming feeding tubes, giving Nebulizer treatments, and being the only interaction with our kids because the rest of you are too scared or too unconcerned to even give a damn.
So bitch all you want. It's the American way. Isn't that what 's kept the nation alive and kicking for nearly 250 years?
As one of Ben's parents I am shocked and angry at the many responses to The Ashley Treatment. The responses are for the most part uneducated and imbecile. Evidently the American public buys into the corporate media accounts of stories like this one. The villain is identified and the public begins their collective judgment of the individual (plural in this case) has begun.
The only thing I can say at this point is that my heart goes out to Ashley's family and I hope to God they are not reading the crap most people are saying about their parenting abilities much less the thoughts in regards to their decision to improve Ashley's quality of life. The ONE (and I mean only one blog post I've read) from a parent of a severely disabled child that is against their decision at least admits that the American people have failed in caring for it's most indigent.
Most of you who will read this bitch about taxes. You bitch about Uncle Sam intruding upon our private lives. You bitch about parking at the malls during Christmas. You bitch about colds intruding upon your family gatherings. You bitch about everything.
Okay, I'll admit to doing the same. But I come home and sit in front of an individual that has never bitched about anything other than the many needles that his body has been stuck with. I sit and look at his smile and say, "Thank you, God. I've had one more day with my son." How many of you have this conversation? Everyday?
You who sit in judgment can always expect the homecoming of your loved ones. You can expect your children to go on to college. You can expect your lives to be just like those pretty ads on TV or on the internet and you'll live happily ever after. Meanwhile there are families like us that are goddamn thankful our son wakes up each morning. We are thankful he can go to school some days because the latest virus isn't putting classmates in the hospital. And for some unknown reason Madison Avenue never puts our pictures on a billboard.
As I said at one site today, we are now the silent minority. We're silent because we are too busy changing diapers, priming feeding tubes, giving Nebulizer treatments, and being the only interaction with our kids because the rest of you are too scared or too unconcerned to even give a damn.
So bitch all you want. It's the American way. Isn't that what 's kept the nation alive and kicking for nearly 250 years?
7 comments:
Thank you for your kind words and the links from your site. It is through discussions like these, that we help people understand what it is like to care for people like Ben and my own Dear Son. There is nothing glamorous about caring for the severely disabled but there is something quite wonderful about waking up to their beautiful smile every day. After you've spent enough time in the hopsitals and seen how difficult life is through our children's eyes, it changes you. We need to do a better job as a society of helping kids like Ben and Dear Son.
You are right about many of the things you describe with regards to our daily tasks and I can tell from your blog that you too love your own dear son. I am thrilled every day that I have with my own too.
I belong to an on-line exercise group and one day one of the women told me about how she admired me and the care I took for my son. She said she was reading a book over the weekend and there was a quote that reminded her of Dear Son and I. It said, "To the world you are one person but to one person you are the world." I am sure your beautiful Ben thinks the world of you.
Peace to you my friend. Thanks for opening the doors of communication on this difficult topic.
Woha.
Breath.
Oh, I so want you on my debate team!
I just want to smooch that kid of yours... Damn but is he pretty!
And as for being one of the silent minority, keep up with these posts and challenging people to think outside their box and to remember our children.
We won't remain silent for long.
Sorry..heh heh...you can't kiss Ben until you get rid of the pin worms in your daughters ass. Oh I SO want to be invited to Fric's wedding!
parents who do the best they can for their children are amazing at any time. parents who do the best best they can for their exceptional children are even more amazing.
people in general are so eager to sit in judgment of any parent. someone gets 1/1000th of the information of the very complex events and dynamics that go on in a family, and immediately there is judgment. how silly. and terribly inconsiderate.
(btw, as a parent of three, i certainly do not feel equipped at all to evaluate, let alone judge, ashley's parents.)
you said this:
"You who sit in judgment can always expect the homecoming of your loved ones. You can expect your children to go on to college. You can expect your lives to be just like those pretty ads on TV or on the internet and you'll live happily ever after. Meanwhile there are families like us that are goddamn thankful our son wakes up each morning. We are thankful he can go to school some days because the latest virus isn't putting classmates in the hospital. And for some unknown reason Madison Avenue never puts our pictures on a billboard."
would it be possible that in your very understandable frustration, you are stereotyping others, as well? just as those who judge ashley's parents have no clue what's going on in ashley's family, i presume that you don't know whether those who judge them can expect the homecoming of their loved ones, their children to go to college, etc.
i'm bringing this up not to criticize you but to point out that perhaps at the root of all of this is this whole "us vs. them" thinking. there are parents with "normal" children (them) and parents with exceptional children (us).
i imagine if i were in your situation, i would also think that way most of the time. and much of the reason for this lies in a system/culture that keeps up this illusion of normal vs. not-normal, embracing and praising the normal and excluding and shunning the not-normal.
it's interesting in this context that you bring up bitching about taxes. that's another example of "us vs. them".
but i, at least, want to pay taxes, so that you can be helped, so that people like ashley's parents have more options before making a decision. because, in the end, as david says, we are all ashley.
I would agree with you that it is an "us" vs. "them" attitude that prevails. As far as stereotyping, I'll let other parents of special needs kids chime in but I would say the "typical" experience is that because of the disabilities we are largely ignored. If we're not ignored then our children are usually looked upon with horror. How can you not develop an us vs. them attitude?
Your wanting to pay taxes is not the norm. Here in the state of South Carolina there has been an on-going fight to raise the cigarette tax for 5 years now to fully fund medicaid. If you go back a few pages you'll see a picture of Ben taken on the steps of the state capital at a rally to raise the cigarette tax by $.22. This tax has not been raised since 1977 - exactly thirty years ago!
The current tax on a pack of cigarettes in SC is 7 cents on the dollar. We have the lowest "sin" tax in the nation - so low in fact that we are not even close to the national average. It's been awhile since I've seen the numbers but the national average is something like $.63 with some states approaching almost a dollar.
There are two factors preventing this tax: 1)we are still one of the highest tobacco producing states so their lobby is fairly powerful and 2) we have a repulican governor and a republican-held house that is hellbent on not raising taxes even though 57% of South Carolinians would be in favor of a modest increase of "sin" taxes (tobacco & alcohol).
That $.29 would fully fund Medicaid programs for the next decade. Our governor has been very outspoken against any type of tax increase even though our health care budgets have been slashed to the bone.
Despite a majority of Palmetto state residents supporting a tax increase Governor Mark Sanford is being inaugarated as I type this for his second term of office.
You know why? Apathy on the part of "them." This is just two examples.
Oh yeah, let me add that David is full of shit.
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