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Posted on: Fri, 08/10/2007 - 1:15am
lilysmom's picture
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Joined: 07/20/2007 - 09:00

I wouldn't change/trade a thing. I'm happy she is a healthy, active, outgoing 4 year old. There are so many other crosses to bear and as the old saying goes, "the grass isn't always greener"

Posted on: Fri, 08/10/2007 - 2:56pm
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Joined: 04/16/2005 - 09:00

I think what always bothers me about this idea (in this thread and others) is that
"Oh good--we got X instead of Y. We like our situation better."
Who in the world said we aren't going to get Y [i]also[/i]. It's not like people are dealt only one hand in life. The game goes on for a long time (gladly).
I also have a lot of issues with a theological rationale for PA, but that's just me. And I explained my position on that in another thread--something about God being bigger than this and not passing out tragedy for a purpose that only God knows.
If that logic/faith is spot on, then the logical conclusion would be that God gave my four year old nephew leukemia. [i]Gave him[/i] leukemia. As though all that suffering were a gift, could be useful for a higher purpose (but not my nephew's though). Then it would have been a part of God's plan that that little boy suffered the way he did--regular spinal taps and femur bone marrow taps without anesthesia. A kid who was away from home most of the two years before he died. I can't imagine a God who would play with us that way. It's just inconsistent with my theology.
[This message has been edited by McCobbre (edited August 11, 2007).]

Posted on: Sat, 08/11/2007 - 3:21am
journstep's picture
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Joined: 07/30/2007 - 09:00

Quote:Originally posted by McCobbre:
[b]I think what always bothers me about this idea (in this thread and others) is that
"Oh good--we got X instead of Y. We like our situation better."
Who in the world said we aren't going to get Y [i]also[/i]. It's not like people are dealt only one hand in life. The game goes on for a long time (gladly).
I also have a lot of issues with a theological rationale for PA, but that's just me. .][/b]
I agree with you McCobbre. I also find the "At least it's not Y or Z," premise of some of these posts distressing. It's fine to want to make the points that having PA/other FA, despite its many difficulties, doesn't have to be a tragedy, that there are often positive, unexpected compensations, that there are worse things in life, that for some of you, PA is a part of you/your child that you wouldn't change. But it's not necessary to put negative value judgments on other disabilities or conditions to do that.
Besides having adult onset FA, I've lived my entire life with one of the visible and permanent disabilites specifically mentioned in this thread. Over the decades, both personally and professionally, I've interacted with thousands of adults and children with every disability or condition on the list and more. And you know what? Many of us say exactly the same things as above about these "other" conditions some of you would rather not have. We have productive, interesting, generally happy lives, with many of the same experiences and ups and downs as people without our particular diagnostic labels. We want dignity and opportunity on a level playing field, not pity. Our disabilities or conditions are part of who we are, and we wouldn't change them.
That's not to say, at all, that it's always easy. Many of us remember a time, not too long ago, when 504, IDEA, ADA, among many other things for those with disabilities in the United States didn't exist at all. Many of us fought hard for years on the front lines for that, and continue to do so for other things that will improve the quality of life for *all* people throughout the world with *all* conditions that might be construed as an impairment. Those of you currently raising children with PA/MFA are benefiting directly from that now. Being new to FA, I also know that some of the things I'm benefiting from now, like FALCPA, are the result of the advocacy of many of you parents and adults with FA who have walked this path longer, and I don't take it for granted, so it's ironic and a bit personally off-putting to me that some posters here apparently find other disabilities and conditions so unacceptable to them.
I do understand fear of the unknown. With adult-onset FA, I've gone through the usual emotions of denial, fear, anger, grief, guilt, that I do not want this, do not need this on top of everything else in my life, have long since paid off whatever cosmic debt I might owe in the "go through something that will make you more sensitive to others who are different" department. Unlike with my other "label," at this point, I do want treatment for my FA when and if there is something viable and reasonably safe. On my darkest days, I would probably choose *any* disability mentioned in this thread over FA, and my FA isn't even life-threatening. But I know that's out of proportion. I know that's just emotion and it's "normal," whatever that word means. I know from talking to other adults with FA and from other experiences with people with acquired disabilties that it usually does get easier eventually, and it has. It's the same for any other disability. If it happened to you or your child or another person close to you, you probably wouldn't like it at all at first, but in time, same as with PA, you would learn to "just deal" and see it as just one of those things some of us have to cope with in life that may be a pain, but doesn't have to mean a tragic, unlivable life. People who happen to have labels other than FA are no different from those with FA. One is not "worse" or "better" than another. Please do not fall into that trap. It doesn't help anyone's cause in the long run whether the label is or isn't FA.
With respect,
journstep
------------------
(relatively recent adult onset non-ANA TNA/inconclusive PA)
[This message has been edited by journstep (edited August 15, 2007).]

Posted on: Sat, 08/25/2007 - 7:51am
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