I am so sorry to post again so soon. I know I'm a windbag and all. However, when something comes up, I've just gotta pass it along.
So I've learned that S. 718, the creatively titled "Reducing Regulatory Burdens Act of 2011," is up for a vote in the Senate. The House version passed back in March.
The Big Umbrella is a forum for brainstorming how we parents of sick kids can unite our interests - and therefore our numbers - in order to become a force for reckoning. We've all spent our time and effort advocating, raising awareness, and raising money for whatever ails our particular loved ones; here, I hope to determine what our common cause is and go from there.
Tuesday, May 24, 2011
Monday, May 23, 2011
A Brief Note on Simple Logic and Taking Responsibility . . .
I have a couple of seemingly unrelated concepts to share with you. For most of you, the relationship will become obvious as soon as I reveal them. But many people have not put the two together, evidencing an almost pathological aversion to simple logic. Unless they just haven't thought of it before. (Our logical capabilities may have atrophied in the spoon-fed information age.) So just for the fun of it, let's assume that the latter is the case; here comes the sharing.
(Yes, I know. I have a weird sense of fun.)
(Yes, I know. I have a weird sense of fun.)
Monday, May 16, 2011
Stress, Values, and Saving the World
There isn't much harder stuff in life than dealing with a child's illness, whether it's a chronic and unrelenting uphill battle or an impending death. We all have these battle scars, we're all a little PTSD - post-traumatic stress disordered - and it's so very hard sometimes to match strides with the rest of the world. Because it becomes your world.
I went to some silly stress reduction class a couple of weeks back and there was the usual discussion of the most stressful life events. Several common stressful life events were assigned number values.
(Apparently none of us was polled.)
According to the stress experts, the most stressful event one can endure is the death of a spouse. Okay, I can go with that one. From there, though, it sort of fell apart for me. Just by way of example, divorce scored a 73, while the death of a close family member besides the spouse scored a 63. Not sure whether that's supposed to include the death of one's child, but nothing else on the list fit. The other item that might apply to having a sick child - "change in health of family member (not self)" - scored 44, while pregnancy scored a 40 and "sex problems" 39.
Hmmm. No wonder we feel so isolated.
I went to some silly stress reduction class a couple of weeks back and there was the usual discussion of the most stressful life events. Several common stressful life events were assigned number values.
(Apparently none of us was polled.)
According to the stress experts, the most stressful event one can endure is the death of a spouse. Okay, I can go with that one. From there, though, it sort of fell apart for me. Just by way of example, divorce scored a 73, while the death of a close family member besides the spouse scored a 63. Not sure whether that's supposed to include the death of one's child, but nothing else on the list fit. The other item that might apply to having a sick child - "change in health of family member (not self)" - scored 44, while pregnancy scored a 40 and "sex problems" 39.
Hmmm. No wonder we feel so isolated.
Tuesday, May 3, 2011
The Promise of Spring
My spirits are lifted by the recent greening of the grass and the appearance of buds on the trees, the random tulips and abundant daffodils. Spring has most definitely and finally sprung, and my life energy has returned with it. Not the death of Osama bin Laden, nor the marriage of royals, could divert my attention long from the promise of spring.
My daughter Rori is my spring baby.
She turned three last month. Last year at this time, I sort of went through a "last year at this time I was . . ." phase, and I suspect that will be more so this year, as I prepare to make my first trip home to Missouri since I bundled up my baby and left for Michigan, sleep-deprived and frightened, fleeing a misguided doctor who was convinced that leaving my daughter with me for one more day would cost the child her life.
Sometimes I have to take a deep breath and say to myself, "yep. That really did happen." Because it truly shook the foundations of my beliefs. So spring is a mixed bag for me. Glad to see the sun, but oh the memories . . . I suspect that all of that will lessen over time, as my daughter continues to thrive. All things considered. She is disabled, in the normal definition of "disabled," but she is healthy and she is here. Anger hits me, randomly, when I notice with not a small amount of panic that her hip appears to be further dislocating, and if that STUPID doctor had done her job we might have treated her sooner and avoided this altogether, but all I can do is tell other parents to be proactive. And they look at me like I'm nuts, usually, because EVERYONE knows that the doctor knows best . . . still, it's my life's work, to convince mothers to embrace their inner momma grizzly and to trust her. Trust her! She will never betray you.
People want to believe that all is well in their world.
Once upon a time, I believed that.
My daughter Rori is my spring baby.
She turned three last month. Last year at this time, I sort of went through a "last year at this time I was . . ." phase, and I suspect that will be more so this year, as I prepare to make my first trip home to Missouri since I bundled up my baby and left for Michigan, sleep-deprived and frightened, fleeing a misguided doctor who was convinced that leaving my daughter with me for one more day would cost the child her life.
Sometimes I have to take a deep breath and say to myself, "yep. That really did happen." Because it truly shook the foundations of my beliefs. So spring is a mixed bag for me. Glad to see the sun, but oh the memories . . . I suspect that all of that will lessen over time, as my daughter continues to thrive. All things considered. She is disabled, in the normal definition of "disabled," but she is healthy and she is here. Anger hits me, randomly, when I notice with not a small amount of panic that her hip appears to be further dislocating, and if that STUPID doctor had done her job we might have treated her sooner and avoided this altogether, but all I can do is tell other parents to be proactive. And they look at me like I'm nuts, usually, because EVERYONE knows that the doctor knows best . . . still, it's my life's work, to convince mothers to embrace their inner momma grizzly and to trust her. Trust her! She will never betray you.
People want to believe that all is well in their world.
Once upon a time, I believed that.
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