Wednesday, September 30, 2009

3WW - Ambitious,Incredible, Ugly

"It's not how you survived the storm, but how you danced in the rain."
Author unknown

As my grandson grasps the coming of fall, he will forever link it to me. This incredible little boy understands way beyond his years the ugly side of life. He sees my struggle as he rides on my lap in a sea of faces he may never know. Laughing and playing in the leaves.

He knows so little of Amyotrophic Lateral Sclerosis (ALS) and yet he will reach out his three year old hand to help me. He will wear his "Tammy's Warriors" shirt with pride and get his face painted and tummy fed. Each fall he walks by my side to raise awareness of ALS. It is an ambitious task each year to educate for a cure but when I see his joy I keep on task.

Everyone he grows to know throughout the years will find out ALS is not just what a famous baseball player had. But that ALS steals your body until you can no longer move or speak on your own. It steals grandma kisses and hugs. He will share the technology that keeps coming along and one day we will dance, not walk, in celebration of a cure.

Everyone searches for their purpose and I have found mine. Average life expectancy is 3-5yrs with ALS and there is no cure, no remission. I have had it over 19 yrs, why me? Because I can tell you what it is and how it kills. If not for survivors raising awareness there will be no cure and many more will die silently. It can hit anyone at anytime wouldn't you want to know.

This is my grandson TK at last years Oct. walk.

20 comments:

Tumblewords: said...

Excellent! It's such a pleasure to 'know' you and to read your inspirational messages. It is wonderful that TK recognizes this. Kids are so much more aware than most people give them credit for.

quin browne said...

kudos to the two of you

Nancy said...

Once again, you make my heart ache and yet soar all at the same time. Only you can do that, Tamela.
Spring is not all that far away, and that is our goal to get there for a visit.
I love the photo...looks like he caught it as it was falling. Such joy.
I love you,
Nance

ThomG said...

You are such an inspiration to us all. I'm glad you've chosen 3WW to tell the world about ALS and your bravery in the face of it.

Amber said...

I read this, and I am so proud to be your friend. And I read this, I am heartsick that you have this, and I HATE to imagine anything getting harder for you. And I read this, and I pray along with you for a cure.

No matter what, you have found your purpose. You use your voice, and your beauty-- inside and out-- and people hear you and see you.


:)

anthonynorth said...

You do right to tell us. You're a great inspiration.

swapnap said...

TK is just adorable and i wish and pray that he gets alll grandma kisses and hugs. You have such strength in you Tammy, a real warrior you are.

emmapeelDallas said...

I agree, Tammy, you're an inspiration to everyone who reads your eloquent words. You are a warrior; there is never any self pity in what you write, you just tell it like it is, and that is one of many things that I love about you, my friend.

Ann (bunnygirl) said...

Thank your for staying visible and letting people know about ALS. Hopefully awareness will bring a cure sooner rather than later.

b said...

I cam just feel his little hand in yours. I am sure that we live for and because of such things. I can not thing of any other. I send my love.

Thank you for stopping by. I love your comments.

b

b said...

Oh by the way...please forgive my misspelling...we have come in late after staying with our granddaughter while her teen aged brother was with his girl friend. That on top of a day with our 18 mo old grandson. Our life is full. We leave tomorrow for Tucson. I think I might sleep for a week when we get there. :)

b

gautami tripathy said...

You always inspire me. I am glad I know you.

Review in verse

Belle said...

How does one live with the unknown? It's so had to just "let go" and live... but somehow you have found a way. And through your courageous blog, you have shown me...

Not that we're always brave... just showing up sometimes is a challenge. But one thing I'm learning is to trust the process.

Thank you so dearly for this post...

Lucy said...

oh Tam..you know how to just grab my heart and pull with all your might!
I have believed from the time we first meant.. that there was a reason YOU have been able to break the odds and survive.. Your voice is being heard Tammy and with the awareness that you help share.. a cure will be found and You will be around a long time with your sweet Tk..
TK.. what an old soul in a sweetie young baby!
I am so so honored to call you my friend Tammy! xoxox

Tabor said...

i have been following your 'war' via FB and am just now getting back to reading blogs. YOur little one will learn so much from you.

maglomaniac said...

Thanks Tammy for letting me know so much of you.
People like you are the ones who make us believe that Why me is for those who have the guts to say try me instead.
People like you who stand tall no matter what.
tc dear.
Mahatma and me

~Harsha

Kay said...

Tammy, your beautiful grandson is a gift, I can see that. Thinking of you. :)

Forgetfulone said...

You never fail to inspire. That was a wonderful 3WW and a great PSA. I don't know how you do what you do, but I'm glad you do! Did that even make sense? I know what I meant!

JP/deb said...

Love your strength, inspiration and courage ... these are the things that TK will always remember.

xx,
deb

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