Saturday, July 23, 2011


It's a curse.
My son, Jackson said it's strange how the word "cure" is so simple, and yet it is shared and altered by one letter, 's'.


He doesn't understand why our friend is dying.
He doesn't understand why the Gov't is always trying to make the economy better, or to try and "teach" everyone to get along, ..
To try and improve this issue, and vote and work on improving that issue,...

Yet, in my friend's case, and so many other faces, there is no future.
He doesn't understand why our Gov't can pour all this money into chance.


They don't know if their "ideas" will work.
 But they agree to try.
Some fail, some work, many you won't see the effects until many years down the road.
But they continue to vote and veto and Ney, hey and say.
Chance is still part of the Government and their vocabulary.
For our friend, there isn't such a word.

My son wants to know why the hospital gave me crutches because of a recent injury with my toe. and why it's so hard for our friend to get a ramp.

He wants to know why our insurance company will pay for my crutches. Even though I can still attempt to walk without them..
Hobble on them, or wobble with one.

He wants to know why our friend has to pay out of his pocket for any sort of mobile equipment, when soon he won't even be able to walk, let alone hobble. Insurance doesn't cover ramps, chair lifts, pulley systems to help the body lift up out of bed and so forth.
Not a dime.
Not a penny.
They don't even permit a flip of a coin. At least there's still "chance."

But they'll cover a sprain to the shoulders. A wrap for the knee, crutches for some damaged toes, and...and and..

My son is going to be 10 in the fall, and is already far more aware of "life" then I ever was at his age.
It's our intent to promote removes later ignorance. We don't know the impact it may have, at this point, but we're hoping that "chances" are, our involving our sons in important matters such as "life," will help promote awareness someday.
It does come with questions and painful scary truths...
the mind wanders, the eyes gaze around the room as they observe more grown men sobbing as our friend stands before us, trying to speak.
Soon he'll have no voice.

A few recent questions from our son:
"Mom, can I die from ALS?"
"Can kids get ALS?"
"If I write a letter will the gov't listen to me?"
"How will I know?"

My reply?
"All you can do is try. When you try, you are awarded with chance, even if it isn't something you'll see with your eyes..and chance means a possibility for change."

Our 31 year old friend is dying.
His daughter recently turned two.
He was able to see her first steps, and hear her call him "Daddy!"
 But she will not see his feet walk her down the marriage aisle, someday. She will not have him alongside her as she walks thru the kindergarten world, in three years or four.
36 to 48months until she goes to kindergarten.
In that time, our friend's months will be up.
Unless chance helps bring change, and change gives more odds.

ALS is a cruel curse.
The fact that it's such an ignored disease, is even more frustrating. The govt' or insurance companies don't recognize it as a disease. WHAT????????

Do you know it costs approximately $200,000 a year to take care of your ALS family member or friend?
40 medications a day, approximately.
At that point, mashed up and mixed and poured down the tube that feeds you.. thru the port.

Our friend is dying.
My son doesn't understand.
He doesn't understand why someone is so willing to pour money into something that is strictly " economical chance," but yet it just doesn't seem that they're willing to pour money into ALS's chance.
If you don't know what it does to someone, you're lucky.
In this house, we've seen what it does. To three different people.
Only this particular person, this one of three, is just 31.

ALS attacks all (and more) that is listed in this title.
Perhaps you could just spend one minute and google ALS, and read what it does.
Maybe your own click will put the future and the "chance" of finding a cure, one step closer.
My son's letter is his "chance" to move 's' out.
Will you join in some how, in your own way?
It's about time that "s" is removed from this Disease!

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