Round Eight: Heartbreak pt 1

It's taken me longer to write this post. Writing these memories means that I am reliving them in my head. My mind is back in the moment and this chapter is hard to relive. My head was in a tornado that night. Even now as I prepare to delve back into the darkness of that night... my heart is racing. With a deep breath and tissue at hand... my mind travels back.

It's close to midnight on June 18, 2005. Momma and I are watering our newly planted flowers and the hanging baskets on the porch. I squeal because a frog jumped at me. Momma laughs and turns the sprayer towards the frog. She tumbles it off the porch with a burst of water. We laugh harder and harder at each frog as she sends them off the porch with a watery send off.

In mid laugh,  Momma sharply inhaled.  Again... and again. I spin around to face her. She drops the hose and grabs the rail,  her face ashen and devoid of color. She is making a God awful noise I'll never forget and words cannot describe.  Between the weezy gasps, she tells me to get the orange juice,  she thought her blood sugar had bottomed out.  The past week she had been getting used to a diabetic life style. She was just diagnosed a week ago.

I fling open the front door and sprint into the kitchen. My hands shaking I grab the orange juice and a cup. I pour the orange juice while running back into the living room. Orange juice is splashing everywhere as I round the corner of the dinning room. I look up and see Momma lowering herself to the floor beside the door. She is loosing consciousness.  I kneel down in front of her and grab her chin. I put the glass to her lips and tip it back. Orange juice runs down her face. "Momma! DRINK! " I pleaded. She is going in and out. I tip her head with the glass this time. She gurgles. "I'm calling 911, Momma! " she barely nods.

I call and the operator walks me through CPR. I follow her instructions,  but everytime I blew air in it came straight back out sounding like a wet balloon deflating. My guess was her airway had completely shut. After what seemed to be an eternity,  the paramedics arrived. I felt physically sick watching them work on her. The worst feeling was when they put the automated defibrillator on her and it kept saying,  "no pulse." My mouth instantly felt like the Sahara desert and my knees betrayed me.

They loaded her on the stretcher and continued working as they loaded her. They asked if I was going to ride or follow. Ride or follow? ! What about Daddy? !?! Oh,  God!  It was then I could hear him sobbing and calling my name. "Whats going on? !" He cried. I turned to the EMS worker,  "my dad is sick,  I can't leave him... can you pleeeeeease take him with us? " He said he was sorry but he couldn't.

My mind raced... I did the only thing I could think to do. I told the EMS to hold on and ran next door. I scared my neighbor,  but when she came to the door I begged her to come sit with daddy while I went with Momma.  I'm sure about 90 percent of what I said was unintelligible, but she agreed. I ran in and told daddy I loved him and I had to go with Momma. He asked if she was okay... I tried to keep a straight face as I said "I don't know. I love you! " and I ran out.

We arrived at the hospital and I walked around to the ER entrance. Me and my teddy bear, I grabbed him at the last second, were escorted to the quiet room. FYI... quiet rooms are never good.   

Round Seven: The Monster vs My Hero

June begins and its all a proceedure. Sun up, sun down... days blur together.  June 12, 2005- Momma and Daddy's 29th wedding anniversary.  I don't remember much,  there was a palpable feeling of saddness in the air. I do remember Momma leaning over to tell Daddy happy anniversary,  kissing him on the cheek. She left the room afterwords... my guess was she went to cry.

The week before Father's day was filled with dread for me. I couldn't stomach it being his last. He was also very emotional. It was one thing to be able to put on a happy face and be the cheerleader everyday under our new reality, but I could NOT handle my Daddy crying. It cut me to the core. As a Daddy's girl,  it boggles your mind to see your hero weep like a lost child. I had got my acceptance letter from Georgia College and State University. I went in to show Daddy... and watched as his lip quivered and he let loose a heart wrenching sob. I hugged him as the hot tears from my own eyes stung my cheeks. I held him as his sobs calmed,  but I did not allow my breathing to change. I didn't let him know I was crying. I couldn't.

Saturday, June 18, 2005.
I was piddling around the house,  doing much of nothing. I walk down stairs and see Momma on the couch. She's wipeing her eyes in a way trying not to be noticable. I notice the movie on the TV. The Notebook, the end of it. "Yeah... THAT movie..." I said to her pointing at the TV. "YEAH..." I continued "I'm gonna water the flowers." I stepped out on the porch.

Little did I know, that was the beginning of the end of the life I had known for 18 years.

http://m.youtube.com/#/watch?v=vTnWFT3DvVA&desktop_uri=%2Fwatch%3Fv%3DvTnWFT3DvVA

Mid-Fight Report: ALS News

http://www.alsa.org/news/archive/new-findings-rna-role.html

Exciting find about the cause of ALS. With more discoveries like this,  the closer they are to a cure!

Round Six: The Monster is Real

May was the big month. Graduation. At school I felt half present, my morning routine kept getting longer as the Monster drained more and more strength from Daddy. I was getting up at 530 and getting to school with barely enough time to go to homeroom. I'm sure I looked like a rag-a-muffin,  no make up and sopping wet hair everyday. I was over high school. I guess I could blame the Monster for that,  too.

People starting bringing Daddy equiptment. I didn't know til later,  but it was the wonderful ALS association. They brought him a lift chair that he could get in and out of easier. My first blow of reality came when I was in the wrong place at the wrong time. The ALSA lady was talking with Momma and Daddy in the bedroom. The door was almost shut all the way,  but open just enough so as I passed by the door I heard her say,  "A trach will only prolong your life... its not a permanent solution." My heart dropped. It is real. He isn't going to get better.

Oh,  and I believe I have failed to mention- I didn't know the monster's name. Not yet... I did not know Daddy had been diagnosed. Its not as if I was unaware that Daddy was not going to get better, no... I was aware. It just had never been confirmed to me. I just think Momma couldn't tell me, because she needed me to be the cheerleader. She needed my optimism to get her through.

The big day came. Honestly,  its still a blur.  I know that if it hadn't have been for my awesome family,  my Daddy would have missed the whole thing. It was a true blessing he was able to make it. It was the second to last time he left the house.

My graduation party is a blur too. Honestly,  trying to remember it, visualize it in my mind is difficult. If I could project my memory of it on a screen it would consist of voices and blurred faces spinning in a haze. There are only a few moments of clarity. I remember walking barefoot on the driveway. Taking pictures with my friend. Taking pictures with my cake. Most of all,  I remember the feeling that everyone felt sorry for me. Not in a mean,  intentional way... but rather,  sad knowing what was going on and what was inevitably around the bend.

After the party,  Momma started showing signs of severe fatigue.  I would get Daddy in the bed and go into the living room only to find her passed out on the couch. I would then wake her and see that she got to bed.

The Monster was siphoning strength from Daddy, but it was also breaking Mommas heart.

Round Five: The Move into The Corner

So,  April came and so did the move to the new house. I never knew how exhausting it could be... but I sure found out. I also found out the difficulty of making choices. I was supposed to go to my senior prom that next weekend. I didn't go. I felt terrible,  my best friend had bought my ticket and dress... but the move and adjusting to a new routine was all I could handle.

One of the last times Daddy came outside the bedroom was two days after we moved in. I was on Spring Break. I felt like we were two kids... it was hilarious. Momma was gone and we were up to no good. I put daddy in the rollie computer chair and wheeled him into the kitchen. We decided we would have pizza rolls for a snack. Well... pizza rolls must cook and we got bored. I looked at daddy,  smiled and said,  "Ya know... this floor plan looks an awful lot like a racetrack! " He chuckled, "Yeah..." and  and then grinned. I jumped up and got behind him in the rollie chair. "Hold on to yer britches, Bub! " and we were off!  I ran him around the downstairs "racetrack". We laughed til our bellies hurt,  then ate some pizza rolls. We got busted by Momma when she got home. She yelled at us cause the chair left a few scuff marks on the new hardwood floor. Opps.

The monster was continuing the fight. Daddy had only enough strength in his legs to hold his weight, he couldn't move them on his own. So when I went back to school that next week,  I had a new routine. I had to wake up at six and hop in the shower. Get dressed. Get daddy out of bed, which involved a procedure of pulling him up to a sitting position, pick his legs up and swing him around to the side of the bed. Then,  I would pretty much bear hug him and help him shimmy over to a chair and sit him down. I would then make him breakfast,  feed him,  fill up his water mug,  make sure he could reach his straw and program the shows he wanted to watch to automatically switch. I would throw myself two biscuits in the microwave,  throw them in a ziplock, and sprint out the door by 7. Momma would come home on her lunch break to feed him and let him go potty. Then I would come home right after school.

The monster had all of us in the corner,  but the fight was not over yet.

Commercial Break: Song for Daddy

This song nails it. It kills me that verse 2 never happened for me,  though. I wish more than anything the Monster could have waited til Daddy walked me down the aisle...

You Can Let Go-  Crystal Shawanda

"Wind blowin' on my face
Sidewalk flyin' beneath my bike
A five year-old's first taste
Of what freedom's really like
He was runnin' right beside me
His hand holdin' on the seat
I took a deep breath and hollered
As I headed for the street

You can let go now,
DaddyYou can let go
Oh, I think I'm ready
To do this on my own
It's still a little bit scary
But I want you to know
I'll be ok now, Daddy
You can let go

I was standin' at the altar
Between the two loves of my life
To one I've been a daughter
To one I soon would be a wife
When the preacher asked,
‘Who gives this woman?'
Daddy's eyes filled up with tears
He kept holdin' tightly to my arm
‘Till I whispered in his ear
You can let go now, Daddy
You can let go
Oh, I think I'm ready
To do this on my own
It still feels a little bit scary
But I want you to know
I'll be ok now, Daddy
You can let go

It was killin' me to see
The strongest man I ever knew
Wastin' away to nothin'
In that hospital room
‘You know he's only hangin' on for you'
That's what the night nurse said
My voice and heart were breakin'
As I crawled up in his bed,
and said

You can let go now, Daddy
You can let go
Your little girl is ready
To do this on my own
It's gonna be a little bit scary
But I want you to know
I'll be ok now, Daddy
You can let go
You can let go

Round Four: Sucker Punched

Chaos incarnate is packing a home of 28 years with a pack rat... on top of caring for Daddy,  going to school,  and trying to keep up a social life. The social life had to go. Not to mention the stress of it all was making me reclusive anyway.

By February, I was taking my lunch break at home. I was blessed to be in the teacher cadet program and my wonderful teacher (love her to pieces still to this day! ) allowed me to go home after I completed my alloted time at the Elementary School. I would go home and fix my and daddy's lunch. We invented and modified utensils for him to eat with. Daddy was very smart at designing things and he would tell me how to make it. His fork was a plastic fork from Wendy's with napkins balled up and covered with duck tape to make it easy to hold with his limited grip. I enjoyed those times as well. Just being with him.

We had gotten used to the new ways of doing things. I thought that we had things figured out. The Monster was determined to prove me wrong. It was probally March at this point. I'm lying in bed,  almost asleep and I hear a loud thud. I sit up and listen intently. "KRISTEN! " momma yells.
I run in their room, hurdle the bed and stop in the doorway to their bathroom. Momma was helping Daddy back to the bedroom when his legs gave way.

Anyone who knew my Daddy, knew he wasn't one to ask for help. He was of the upbringing that a man didn't ask for help... he just did what needed to be done. So, seeing him lying on the floor,  completely helpless was something I could barely stomach. The Monster had delivered a sucker punch. I shook my feelings aside and tried to help. Momma was no bigger than a noodle at this point and Daddy was still a good 300+ pounds. So I told Momma to move and I went at it. I tried every point of leverage I could. I rolled him, tried putting my legs under him... it was useless. My 160 pound, 5'3" frame was no match to his 300 pound 6' frame of dead weight. I felt like crying because I couldn't help and the longer he was lying there... the more he hurt. He didn't like it,  but we finally had to call the paramedics.

The monster let us know that night that he was still there and he wasn't finished.

Round Three: Keeping Busy

Round Three began with a new year. 2005 was suppose to be a year of celebrations in our family. My Graduation and Momma,  my Aunt and two cousins were all hitting milestone birthdays. Although,things couldn't be less cheery around the house.

Momma had got the go ahead from Daddy to start looking at houses. I was excited,  I had never lived anywhere else and took this on as a new adventure. Momma was excited,  but in a much more subdued way. She was getting exhausted and Daddy's illness was breaking her heart.  God love her,  she never broke in front of me.

We had to look for houses that could accomodate Daddy's needs. Big master bedroom on the first floor,  wide door frames for wheelchair access,  no stairs on the entry ways,  wide walk in shower to accomodate him being wheeled into it. There just wasn't an older house on the market to fit us. So Momma found a subdivision in progress. We spot a house in mid construction.  "The House on the Hill". We just had to pray it wasn't under contract.

It was late January and I was at a swim meet at UGA. Already I was pumped just to be on the UGA campus. I dreamed of what it might be like going there. I say dreamed... cause at this point I knew,  one- we definitely couldn't afford me going there without Daddy's income and two- there was no way I could be that far from home. I already knew I was gonna be taking care of Daddy, I just didn't know to what extent.

Well... as I was daydreaming and watching my team mates, Momma calls.
"We got the house! " she said.
"The one on the hill?!" This was the one I liked... it had a huge bonus room that I wanted for my room.
"Yes! "

That was that.  Now, the chaos was soon to begin.

Mid-Fight Report: ALS News

As some maybe aware, there was a huge controversy in Atlanta this week over an ill attempt at humor by 3 sports talk radio perspnalities. Here is a link to an article...

http://m.accessatlanta.com/weblogs/radio-tv-talk/2013/jun/17/790-zone-fires-mayhem-am/
     
So, when I first heard the skit I was ablaze with fury. I posted and ranted and then I got a brilliant idea! I'm going to the source! Nick Cellini... the guy pretending to be Gleason. I'm going to message him and give him a piece of my mind! I grab my phone and my thumb goes to flying across the "keyboard". My mind says... vent vent vent, maybe he will read it someday. SEND. *2mins* -phone- buzzzzzzzzzz.
Whaaa?! He responded. In a humble fashion. I believe he will turn lemons to lemonade. Here is our convo...

Kristen:
I cant believe people are sending you well wishes! You make me sick. How could you ever think that's funny? ! I watch ALS ROB ME OF MY FATHER AT AGE 18! My mother died June 19 2005 and my dad had already been diagnosed! He passed Aug 11 2005 I watched that disease you found so amusing literally suck the life out of my father! My dad... who loved sports, braves falcons nascar... uga... fishing... all thise things were robbed from him. He was trapped in his body! His mind still sharp was trapped in a body that didn't work! You think that's funny? Want to apologize in a way that's believable? Start raising funds for ALSA of GA. DO A FUNDRAISER AND BECOME AN ADVOCATE. then I might think you are truely sorry.Monday at 10:59pm.

Nick Cellini:
I'm working on that right now. I've received many a story similar to yours. All I can do is try to make it rightMonday at 11:01pm · Sent from Messenger

Kristen:
Holy crap... you actually responded. Well... I hope you do make it right. It really hurts to lose someone to ALS. I hope you are aware now.Monday at 11:02pm

Nick Cellini:
Believe me, I am.Monday at 11:03pm · Sent from Messenger

Kristen:
Wow. I actually do believe you. Please do make good of this. You might actually could use this attention and mold it into good. Thanks for responding.Monday at 11:05pm

Nick Cellini:
Thank you for helping me realize how many people have to deal with the "long goodbye" to their loved ones. I'm truly sorry for your loss...Monday at 11:06pm · Sent from Messenger

Kristen:
thanks. My dad was so full of life... to watch him lose the ability to walk, talk, eat, and breathe. .. was just more than I could handle at 18... heck I still struggle with it at 26. Can I send you a few info graphics I made?Monday at 11:08pm

Nick Cellini:
By all means, please do.Monday at 11:09pm · Sent from Messenger

Kristen: Thanks.Monday at 11:10pm

Nick Cellini:
Thank YOU.Monday at 11:18pm · Sent from Messenger

Kristen:
 no problem. I really hope you can use your voice for change now! Thank you for talking to me... I hope you can make a difference now!Monday at 11:19pm

Nick Cellini:
I will. That's a promiseMonday at 11:20pm · Sent from Messenger

Kristen:
Awesome. Can I add you as a friend?Monday at 11:20pm

Nick Cellini:
Please doMonday at 11:21pm · Sent from Messenger

Kristen:
Thanks... have a good night.Monday at 11:22pm

Nick Cellini:
You tooMonday at 11:22pm · Sent from Messenger

Round Two: The Monster Gains Ground

So... round two begins with Daddy's decision to go on medical leave from work in November of 04. Even though school had me busy, this is when my gut started telling me that something just was not right. I was active in the swim team, this helped keep my mind off things. Ever the optimist, I constantly told myself and momma... everythings gonna be okay. The doctors will figure it out.
Around Thanksgiving, we stayed at a hotel for three days so Daddy could get an IV treatment. It was an in home treatment, but in the intrest of space and momma wanting me to keep busy, we chose to go to the hotel. It had an indoor pool, so I spent a lot of time downstairs in the pool. I look back now and appreciate those three days. I got quality time with Daddy, he came and watched me in the pool, and we got to chat over the free breakfasts.
Christmas came with the least amount of enthusiasm ever shown in our house. All the traditions were there, but the feeling of held back tears and immense saddness hung in the air. The hope of the treatment working had passed and the monster was gaining strength by siphoning it from Daddy. Daddy had loss all movement in his hands and his legs were weakening. I don't remember New Years... I guess we knew to some extent we didn't have much to celebrate... but little did I know how horrid 2005 would turn out to be.

Round One: Meeting the Monster

This is my Daddy and myself in September 2003. As far as I know this is the last photo taken of us. I was 16. Well... whats the best way to introduce a monster? Is there a good way? Doubtful... so here it is. June 2004, Daddy starts to notice his thumb isn't responding normally. He would fumble when picking things up with his left hand. We just thought it was a damaged or pinched nerve. No biggie, right? Worst case he would have to have surgery on his hand. At this point I was consumed with my up coming senior year and driving my car to meet my friends at "the beach," its actually a lake... but that's pretty insignificant at this point. 

Time ticks on and as for me  I am loving being a senior in high school. Next thing I know, the Monster slips up and delivers a shocking gut shot. It is mid October and a normal afternoon. I had been home for a while and Momma had just settled in from work. Daddy comes in as normal, through the garage. He opens the door from the garage to the living room and I look at him to greet him as I normally did. Except, on this day his facial expression was off. It wasnt my Daddy's grin, it wasn't his "bad day" grimmice... it was an expression I was unfamilar with from this face. It was a frightened and embarassed look. "What's wrong, Bub?" I asked as I jump up to take the twelve packs from his hands. 

My memory fails me a bit at this point. Now I can't remember if h he told us then... or if Momma told me later. Either way... the monster delivered his first punch in this fashion:  Daddy had stopped at QT, like he usually did to pick up some twelve packs. He had also got some gas in the truck. He got back in the truck, started it and went to pull up to the trash can to toss something in. When he opened the door and leaned out he lost grip on the steering wheel and fell to the pavement. The truck was still in drive. Luckily, there was an off duty police officer who saw what happened and jumped in the truck and put it in park, just in time to keep it from running Daddy over. I thank God for that police officer! 

The monster had made his presence known,  but he had only just begun.