Life

No doubt about it, life in and of itself is truly a miracle. Sure, it sounds cliché, but look into the eyes of a brand new mother holding her baby. Look and find wonder and amazement, love and purpose, but most of all you will see the eyes of someone beholding their miracle. And sharing that miracle with loved ones, its an amazing part of life. I witnessed that today.

Of course, I've had family members added during my lifetime. Today stuck out in my mind though. For one, today was the first time I've been invited to "the waiting party" at the hospital.  It was a special thing, sitting down with family... chatting, getting to play with my other cousin's baby (who is 4mos old) and waiting to meet our newest family member. It was one of the best times I've had.

The second thing, really hit my heart. It in no way overshadows the joy I feel for my cousin, but it hit home an issue that I will undoubtedly struggle with as I move closer to having my own little family. The look my Uncle had on his face after coming out of the room where he met his grandson for the first time. The joyful tears staining his face. It brought a bunch of emotions to the surface. I was so happy for him... but I couldn't help but think. I couldn't stop it... it was already at the back of my mind.

I will never get to see that. Stupid, stupid monster! It robbed my Dad of that kind of joy. .. that moment in life. It robbed ME of that. It kills me. There are so many things that the monster has taken... but I think the fact my Daddy will not be there to hold his grandchild is the HARDEST pill to swallow. Heck... I blame the monster for Momma too. Because of it, she won't be there to hold my hand. Tell me her experience... what she did. What I should do. Things a daughter should have her mother there for!

Stupid monster! I hate you... as God as my witness, I will work tirelessly to eradicate you. So one day, someone's daughter won't be sitting in front of a screen, tears running down their face, wishing that their parents were still around! 

The War Continues

Just because I have completed telling about my Dad's fight,  doesn't mean my blog is done.  Oh no,  no,  no... I can't let the Monster get away with it! So, I know I've made posts on facebook about creating a page for my blog. I got shut down. Not many folks seemed interested.

Well... I've decided, to heck with it. No one ever started something worth talking about by waiting for people to talk about it. No,  I have to keep the buzz going, I have to kick start this train.  Well,  enough with the babble, I'm creating a blog page on Facebook. As soon as it's done,  I'll post links- so you all can share!  ;) 
Oh and a huge big thank you to all who read this! It makes me oh so happy that I can write down my story and my mind and people actually read it! Thanks!

The Final Round

Once again, this is very difficult to write. My writing process for this blog involves me reliving these moments in my mind. So,  as you can imagine,  reliving it all isn't an easy thing to do. Yet,  here we go. The final round.

August 10, 2005

Daddy was very weak this day. His breathing was getting worse and his anxiety level was spiking. The anxiety was draining all his energy. Not to mention that his morphine breathing treatments were adding to his lethargy, but it was better than seeing him gasp for air.

The hospice nurse, I believe his name was Tom,  was on his way. During his last visit he had convinced Daddy to let him insert a catheder. With his weakening muscles, Daddy was no longer emptying his bladder all the way and this could lead to an infection. Daddy was not happy,  but agreed to do it to avoid infection.

When Tom arrived,  he and the on duty nurse went to work on inserting the catheder. I went into the living room to wait.  I could hear Daddy grumbling at them, they were trying their best to comfort him. I'm pretty sure he was cussing them... they just couldn't understand him. Ha. After a good while,  they both stepped out. "He's resting, that took a lot of energy because he got upset. We couldn't get it in today... I'll come back tomorrow."

Daddy dozed for a while and then it was medicine time. He needed more liquid morphine for his breathing and an Attivan for him being so worked up. He told me he didn't like Tom very much... I could understand why. We laughed about that. The rest of the night was uneventful.

August 11, 2005
The day started out pretty normal. Daddy was really lethargic,  though. He kept complaining about his breathing.  I gave him more morphine to help. R came on duty, she was a welcome sight. Daddy recognised her presence,  but he was not alert like he normally was. As R and I discussed what we could do for him,  she glances at him over my shoulder.

"Oh my God,  Kristen... it's happening." I spin around to look at him. His chest was struggling to rise and his face was turning blue. His eyes were half shut, faintly fluttering. "Get out!  You don't wanna see this... no!  WAIT!  I dont want to tell you what to do! " We both briefly panicked before we caught our heads. This all happened within a moment's time.

R grabbed the nebulizer and put the morphine in it. As it came on I held the mask to his face. His eyes had closed,  but he was still taking slow shallow breaths.  R and I had tears running down our faces. "Can he still hear me? " I asked R.
"Yes. I believe he can." She stood beside him on the other side of the bed.

As I stood beside the head of his bed,  I leaned down at his head. I put my head close and started whispering,  "I love you,  Daddy." I rubbed his arm as I rested my head on his shoulder. I kept repeating,  "I love you, Daddy" as I watched his chest rise, slower and slower. Finally, his chest didn't rise. I turned to R, " Is he...?"
"Yeah..."

At that moment,  I felt it well up inside me... a hysterical cry. I began a sob, when suddenly a calm washed over me. Momma. She was there. She was taking Daddy. I did not see her,  but a child inherently knows their Mother's presence. She was in that room. The peace I felt knowing they were together again... it was like no other feeling. I felt peace. I was heartbroken to lose my hero,  but at peace knowing my parents were together again.  Together,  watching over me.

As quick as I felt her presence, I felt her leave. I felt Daddy leave with her. The room felt as if it had been sucked dry. I walked out with R. We shut the door,  he was no longer there, no need to linger. Now the hard part... phone calls.

The monster may have won the fight, but this is a war. I continue my Daddy's fight. Not in the sense of fighting within my body like my Daddy, but fighting on a larger scale.  Fighting for a cure. I fight in his honor.  I look forward to the day I can look up with a smile and tell him... we won,  the Monster is gone. I await that day with all I am.

Please share and spread awareness. Help me get to that much awaited day.  Thank you! 

Mid Fight Report: Blog Blunders

For reasons,  I do not know... Blogger spazzed on me and I had to repost twelve thirteen and fourteen. Due to this,  my comment from TwystedSam and all record of my wonderful 87 views were LOST!  I'm a sad blogger today. :(

Round Fourteen: Exhaustion

The beginning of August 2005 arrived. I was exhausted,  the nurses were exhausted and Daddy was completely drained. I could tell his will to fight was fading. He had no fight left to give. He was fighting to breathe and that took every ounce of strength he had.To look at him,  it was hard to believe that just over a year earlier he was a fully functioning member of society. From June 04 to Aug 05, the Monster had devoured him. My Daddy was every bit of 300 plus pounds. That August,  he was a skin covered twig. His frame was still big,  but his skin draped over him like a blanket. No muscle tone to speak of. His skin was ashen and thin from lack of nutrition.  He refused any tubes being put in. We had to constantly put one or two drops of water in his mouth to hydrate it, but it couldn't be too much because he couldn't swallow.He was needing liquid moraphine and moraphine breathing treatments to allow him to breathe. He was also on several pain killers to reduce the pain from his deteriorated muscles. Attivan was given to calm his nerves. He would panic when he couldn't catch his breath and it would make it ten times worse.The last few days I felt horrible,  but I was at my breaking point. I only slept a couple of hours at a time. I felt like I was the worst daughter in the world for getting frustrated with his numerous requests. He wasn't pestering me on purpose, I was his caregiver... who he relyed on for everything. But I was exhausted... I had past exhausted into dilerious.I remember just falling in the middle of the kitchen floor, onto my back and staring at the ceiling, with tears rolling down my face. I felt the monster mocking me. Tearing Daddy from my grips despite my best effort. I was so tired,  so exhausted... I could only imagine what it was like for Daddy. I cried and cried... because no matter what I did,  I couldn't save him. I couldn't save my hero.

Round Thirteen: Why I Fight

By mid to late July, the Monster had a tight grip on Daddy. I watched as the Monster left him bedridden and helpless. He could no longer eat solid food and could barely drink water without choking. His only nutrition was from Boost drinks. The Monster had taken from him everything you and I take for granted on a daily basis. Simple things we do without much thought:EatingSwallowingDrinkingWalkingTalkingBrushing your teethWashing yout hairScratching an itchRepositioning yourselfUsing a phone or remoteGiving a hugPetting a dog or catDrivingFishingPlaying a gameAnd finally, it will rob you of the ability to breathe.A slow suffocation.  I watched in horror as the Monster took my hero and left him relying on me and the nurses for every little thing. I wish the Monster was visable, because I'd love nothing more than to punch it in the face! Since it is not possible to actually punch it in the face, awareness is my punch. Awareness in the hopes that it will aid funding. Funding that can go to scientists,  scientists that can find a cure! This fight is personal! The Monster took my hero... I want to destroy it's exsistance! In the words of Team Gleason,  #nowhiteflags ! I will not give up on this... because if I can keep just one daughter from losing HER hero like I lost mine- that's worth it to me!Please help spread the word. Pass this along. Awareness is key. Thank you.

Round Twelve: The Damage

Life had settled back in routine and when R was on shift things were good. We worked well together,  she knew what I was comfortable doing and helping with and what I wasn't. The Monster had taken a lot of Daddy's dignity, I wanted to keep what little he had intact. Tasks such as bathing and changing were not things I did.

Unfortunately,  not all the nurses understood this. One tried changing him in front of me... she got an ear full. Others would talk to him as if he was incompetent or not take time to understand him. The damage was taking toll by the beginning of July. He was completely bedridden and had great difficulty speaking. I was his translator to most everyone. The only other person who was even close to my level of knowing his speech pattern was R.

Even with the speech difficulty, the Monster could not steal my Daddy's sense of humor. As translator, I would listen as Daddy spoke then I would repeat what I thought he said. This was followed by a head nod yes or headshake no. If it was a no,  we would try again. Wash, rinse,  repeat,  until we had it right. It became a game... a game that usually resulted in belly laughs for all involved.

One night in particular comes to mind- R was on duty and dozing in her chair. I was asleep on my matress beside Daddy's bed (I had not slept in my own room since Momma passed.) I was startled awake by hysterical laughter. I sat up to see R laughing so hard she was doubled over and Daddy was laughing so hard tears were rolling down his face.  Confused,  I asked what was so funny. Daddy just shook his head and eye motioned to R. R caught her breath and explained that she was dozing when Daddy woke her. She decided not to wake me and try her hand at playing the guessing game with Daddy. He said something several times and she said, "You want some... HOT SAUCE?!" He busted out laughing and so did she. I don't remember now what it was he actually wanted,  but it most definately wasn't Hot Sauce!

These were the good moments. Unfortunately, those were getting fewer and farther between.

Mid-fight Report: ALS News

ALS Advocacy leads to great things! 

Veterans Benefits

Advanced historic regulations at the Department of Veterans Affairs that designate ALS as a service connected disease. Veterans with ALS and their survivors now have access to full health and disability benefits, regardless of where or when they served in the military and regardless of how soon after discharge they were diagnosed.

24-Month Medicare Waiver

Eliminated the 24-month waiting period that people disabled with ALS had to endure before they could start receiving Medicare benefits. ALS is now one of only two diseases for which the waiting period does not apply, and the waiver for ALS is the only change Congress has made to the waiting period since it was first established.

Presumptive Disability

Orchestrated Social Security rule change under which people with ALS automatically meet the medical eligibility requirements for SSDI and SSI payments. This ruling allows people with ALS to access their benefits months or even years earlier than before.

http://www.alsa.org/advocacy/roadmap.html

Round Eleven: Bait and Switch

After all the haze surrounding Mommas death, life changed dramatically.  Everyone knew that it was time to get help for taking care of Daddy. The "H" word was being brought up. Hospice. For anyone unaware of this term,  Hospice care is for terminal patients. Its sole purpose is to keep the patient as comfortable as possible until the end.

I remember sitting around the table with my aunts and uncles while we set up everything for Daddy. Around the clock nurses and in home hospice care. I tried to be brave,  but I felt like in signing the hospice papers, I was signing Daddy's death sentence. The monster cackled over my shoulder... "He's mine..." Tears roll down my face.

The monster had pulled a bait and switch on us. He broke Mommas heart and distracted us from noticing how much more strength he had syphoned away from Daddy. As Hospice and the ALS association swarmed the house,  bringing in this and that,  it kept sinking in deeper. This is real. The house was filled with equiptment, most of it was terrifying. He now had a hospital bed, an oxygen machine, nebulizer, two wheelchairs, a lift chair, and a long list of medication.

The worst was the Hoyer lift. Daddy took one look and shook his head, "No." It was basically a cherry-picker (engine lift), with a sling attached. There was no way I was gonna trust that thing to lift and move my Daddy. Nope, I'll move him myself as long as I can.

The first nurse arrived,  a young lady not much older than myself. I'll call her "R" for the purpose of the blog. We hit it off immediately.  She took care of Daddy as if he was her own father. She was Daddy's favorite nurse. R was the best nurse we had,  but unfortunately I would find out that the others from this agency would not measure up to her standards.

Mid-Fight Report: ALS News

http://www.alsa.org/news/archive/debbie-matenopoulos.html

Actress Debbie Matenopoulos is scheduled to guest host on The View this Wednesday, July 10. She will use this as an opportunity to raise awareness for ALS. Viewers will even get the option to donate via text while watching the show! Later, Matenopoulos will tour a special center related to ALS treatment. The tour will be documented by a crew from Oprahs network, OWN.

I love seeing ALS awareness spreading! I hope someday this blog will generate awareness to a wide audience.  I'm pretty small potatoes right now... but hopefully one day it will happen!

So,  dont forget to tune in Wednesday! I hope I can,  but its not likely seeing as my reciever broke. :( So... watch for me! Later y'all!

Round Ten: A New Reality

The days to follow are a blur of fragmented memories.  I remember waking up Sunday morning,  feeling like it all should have been a dream. The harsh punch of reality quickly put me into a haze. I know people were at the house... I honestly can't remember who. Sorry. I feel bad admitting that,  but my honest memory looks like a fog. I know I functioned... I walked, I talked,  but that was pure survival skill. My brain was on strike, it was more than I could take.

My next burst of clarity was sitting next to Daddy at Mommas funeral. I remember leaning my head against him as we cried. I also remember my long time friend from childhood singing Amazing Grace for Momma. I remember listening to her angelic voice,  knowing how much Momma adored her singing. I locked eyes with her and I lost it. Next thing I remember is walking out. Holding my teddy bear and walking next to Daddy and his wheelchair... I scanned over the faces in the pews. Somber, sympathizing eyes gazing at me. It was too much. I feel my lip shake and my emotionless face once again disapears into a squinched, tear filled mess. My brain shuts off again.

Last thing I remember clearly about that day was sitting grave side with Daddy. It pours down rain and the bozo funeral directors sat Daddy and I right at the seam of the two tents. So as the preacher drones on about God and Him calling us home, which I had no intrest in hearing at that moment, my attention is caught by the constant drip of water falling between Daddy and I. I know Momma was laughing at me. Here I sat, at her funeral,  and instead of paying attention, I am focusing on this dripping water. Holes in the Floor of Heaven came to mind and I rested my head on Daddys shoulder and let the drips hit me anyway.

Next clear memory I have is my aunt (moms sister) teaching me how to write a check and how to pay bills. Most people get introduced to this gradually over time. I, however,  had to take the crash course. After being introduced to Mr. Checkbook, I remember I had recieved a checkbook cover as a graduation gift from my moms best friend. At the time,  I had no use for it... so I put it away. I ran up to my room and pulled it out of the drawer. For the first time I read the words on the front of it. Tears ran down my face as I read these words of my new reality:

"For I know the plans I have for you," declares the LORD, "plans to prosper you and not to harm you, plans to give you hope and a future." -Jeremiah 29:11

Round Nine: Heartbreak pt 2

The quiet room is a small room in the ER that is lined with chairs and one small table. I sit down with my bear and stare blankly at the wall. A lady comes in and asks if there is anyone I can call to come be with me. Anyone I can call... it's like 1am. I ask when I can see Momma,  but she insists I need someone to come be with me. Crap. I left my cell phone. She says I can use the phone on the table.

Numbers... whose number can I remember that wont be mad I woke them up? The only number that came to mind was my Dad's brother and his wife, my uncle and aunt. I dialed and my aunt picked up. Voice shaking, I said, "hey, its Kristen. They brought Momma to the hospital, can you and (their daughter) come up here? " "What? You mean your Dad? " "No... Momma... Daddy is at home,  can you send (my uncle and their son) to be with him, please. I know he's scared and our neighbour is with him right now." I don't remember much after that until my aunt and cousin arrived. 

The medical staff waited for my aunt to get there before they came in to speak with me. The following is how I remember it happening. I look up to see a solemn looking man in a white coat. He blankly looks at me and says..."I'm sorry..." and that's all I heard. I let out a deafening screech and burried my face in the top of my teddy bears head. I hear my aunt say, "Oh my GOD! No!" I feel her kneel in front of me, grasping my hand. As I lift my face, I feel a sudden rage corse through me. My eyes narrow at the doctor. "You... you mean to tell me she has been to doctors ALL THIS WEEK and they DIDN'T KNOW THIS WOULD HAPPEN! YOU MORONS!" I believe I said more,  but I'm not sure.

The nurse or human resources person or whoever she was then asked who my aunt was. She then asks, "Where's her Father?" It felt like time slowed... the monster was there and I was about to find out his name. My aunt looked at me, tears in her eyes, gasping my hand tighter. She turned to the nosy woman and said, "He's at home... he has Lou Gehrigs Disease. " She looks back at me and says, "I'm sorry... I know you didn't know." I think I said its okay... I don't remember. All I remember is my head searching. .. Lou Gehrigs. .. Lou Gehrigs... he, died. It's real. It's really happening. No more nieve hope.

On the way home, my head kept recycling the same two thoughts... Momma's dead and Daddy's dying. I remember car lights and street lights hitting my exhausted eyes. The road and trees passing by quickly, but all my mind kept thinking was... Momma's dead, Daddy's dying. 

"You are alone... all alone, by the way... I'm the monster." His sinister laugh wrapped itself around my shoulders where it would stay, its weight feeling like the world.

Mid-fight Report: ALS News

Wonderful article about life with ALS.

http://tablet.olivesoftware.com/Olive/Tablet/AtlantaJournalConstitution/SharedArticle.aspx?href=AJC%2F2013%2F06%2F30&id=Ar01902

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.