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.

Saturday, September 26, 2009

Sunday Scribblings - "Cheese"

In high school I was a spirited, outgoing and flirtatious girl. I was a cheerleader at 5' 1" with a rack and was given the dubious honour of "Class Flirt" my senior year. I still cringe at that label because I knew the boys probably had used a less flattering term. This was probably how I was remembered as our 30th reunion drew near. I had not attended a reunion since my 5yr because I was a big ole chicken. Not many knew what I had or what it did to me. My love story is what they wanted to hear.

It was the weekend before my 48th birthday. I was so excited that I was blessed with yet another year that I decided to go. I was still scared of walking in that room with a walker but I felt that I needed to go. We had decided to leave hubbys at home, stay at a nice hotel and make it a "girls" weekend.

The venue was at Arlen Ness' custom Harley motorcycle showroom. His daughter Sherri was in my little posse and she works there so he donated the space. Amazing Italian food and a live band made for a great casual get together.

Moreau Catholic High School's class of 1979.

I climbed up one step and said "cheese" so many times that by the end of the night my face said "no can do." There was not one look of pity that I saw but instead I was received by warmth and happiness that I was there. I should have brought Dave because people really wanted to meet the man in the love story.

The downside was I didn't want to be fed so I ate a burger before I left, I don't drink, I don't speak well over a band, I left my glasses at home so I didn't recognize anyone unless they came up to me. But there were a lot of hunched over squinting people looking at name tags, so I was not alone on that one. I did have straw for a water bottle but they were shaped like a flask with Arlen's logo. For late comers it looked like I was sucking up Vodka. Together with my speech slur and walker tucked out of the way, well you get the picture.

The lighting in that showroom made all the photos look grainy but these were my "click" that tore up Hawaii after graduation. I tried to keep up but at 3am my body won the battle with my brain. I missed out on I-Hop at 3:30am but my body still took 3 full days to recover. We took so many pictures to remember this night, that say "cheese" was still vibrating in my head to the beat of Journey as I drifted off to sleep.

Going to that reunion made my ALS walk and birthday even brighter.

Saturday, September 12, 2009

Sunday Scribblings - Tattoo

A year ago I decided to celebrate the gift of another year by stepping out of my comfort zone. Yes, you guessed it, a tattoo but not just any tattoo a special tattoo. Hubby was against the whole idea and my kids were in shock. I had given them such grief over their tattoo's that they didn't quite know what to make of it.

My brother, daughter, son in law and grandson joined me on my 47th birthday in Tahoe. I had asked my son in law to go with me to get my tattoo because he had so many. We had to bring my grandson with us because the other two were gambling. I wanted to put my tattoo in a place that was only visible to me and yet not hurt too bad with my muscle loss.

Kat was the artist and I had the vision. Together we created a symbol of my journey through life. The heart of a warrior that has lived with faith and Dave by my side. The design was all Kat and so were the colors. I decided to place it on my lower back which I later learned was called a tramp stamp. Dave loved that! lol

For two solid hours I bit my lower lip in pain as TK tried to comfort me. He kept saying "gamy's tattoo is an owie daddy." Oh yes it was indeed. I did it, I liked it and was proud to have it. When I got home I was nervous to see Dave's reaction. It was bigger than promised and he had no idea what I'd put on my body or where.

He actually liked it or at least the design of it. The size not so much but his name being added certainly helped. Now that I'm getting ready for my 48th I have all but forgotten it is there. Funny thing is the only one who sees it is Dave. lol

This year I donated my birthday to the ALS walk and will zipline in Tahoe.

Sunday, September 06, 2009

Sunday Scribblings - "Key"

I sat on the couch fidgeting with my clothes as butterflies were gathering in my gut. It's too hot out and this was a big date. Our feelings were growing too fast. I knew I should have stopped it by now but I selfishly allowed myself to be vulnerable. As his car pulled up I felt sick with anxiety and yet exited to see him. It all felt so right but could it be real?

He rented a raft to go down a calm river for this date. We had dinner and overnight reservations at the historic Jamestown Hotel afterwards. It was built in the 1800's and he booked the Sarah Burnhardt room. It was known for being pricey but I heard it was like stepping back in time.

Getting to that raft was a feat all on it's own but I showed no outward signs of distress. We ended up with a 6 man raft as the workers cast us off, slightly worried. I had to straddle and paddle up front and he took the rear. We hit every possible obstacle as a team and he even jumped over me protectively when hitting branches. It was a crazy adventure that neither of us had anticipated. With the temps rising to 102 degrees my body started to give me away.

He had to pull into the shade with worried haste, as I melted into a heap. He ran up the bank and sought help. As help and my knight lifted me into a cool van I was relieved but embarrassed. The gal driving asked how long we had been married. He replied "we're not married but dating." She looked back in the rear view mirror surprised saying "the way you were with her I'd swear you were married." "No" he replied smiling, while squeezing my hand.

The dinner and room was amazing. We had a beautiful romantic evening as we laughed about our adventure. The next morning I caught him writting in the room's visitor book. I asked "can I read it?" as he handed it to me hesitantly. He had written "we had a great stay in this room and someday I hope to return with Tammy as my wife."My heart was beating out of my chest as I replied "what?" I know, not a very romantic reply but I was in shock.

He put his hand out and said "here I have a special gift for you." He set a gold necklace in my hand and said "here is the key to my heart." It was a gold heart with a key, as I took it in my hand I knew everything was about to change and I was not afraid. Inside the tiny gold heart it says "He that holds this key has unlocked my heart."

P.S. That was over 6 years ago and we had met online. We were married on Valentine's Day at sunset on a beach in Kauai. I still wear the key to his heart around my neck. It's in this picture but too tiny to see.

Wednesday, September 02, 2009

Three Word Wednesday - Glare, luster, threat

Walk the Talk

The leaves begin turning

lifted into a frenzy of

autumn's call

My stomach begins churning

nervous energy building

with autumn's call

The fundraising begins slowly

banner starts to glare

with autumns call

Recession is still a threat

stealing away dreams

in autumns call

The luster of my resolve dims

fears of rejection sways

with autumns call

Knowing the horrors of my cause

I must raise my torch higher

for autumn calls

I find it very uncomfortable to fund raise even though it's to help others and I have the disease. Autumn is calling and I must get rolling despite the recession. Tammy's Warriors will rise up again on October 17th. See side bar to join us, even if it's just to walk for a good cause.