One Year

One year- many meanings behind those two words. It's been a year since I put my story out there. A year that has brought me new friends from the ALS community. A year that I finally feel like my voice is being heard. A year that I finally feel I am making a difference!

Anyone who knows me closely, knows from Mother's Day to August 11, I struggle with a perpetual depression. This comes from a string of "bad anniversaries" and holidays. This year I hit a milestone. A break through. Father's Day, I was in my usual funk, but trying to drown my thoughts by piddling around on my phone. My phone buzzes, I look and see the facebook icon on my status bar. I slide the status bar down and notice my cousin posted a comment on my page. This is the beginning of my breakthrough.

My cousin's comment said, "Happy Father's Day Uncle Lee" and there was a youtube link attatched. First of all, I felt immense gratitude towards my cousin for recognising my daddy on Father's Day. Secondly, I was curious as to what this link was. "Riverbank" was the title of the song. I plug my earbuds in and click play.  As the song hit its chorus, tears welled up and spilled down my face.

"I wish this was a riverbank, instead of a graveyard..." Sheer perfection of my feelings. I was overwhelmed with emotion and yet so happy that I could connect with my cousin over that song. I told him I wish I could find some of Daddy's fishing club buddies- maybe they could host a memorial tournament for Daddy and have the procceeds go to the ALS association.

Before I knew it, my cousin had started calling buddies and seeing if they would fish such a tournament. Lo and behold... within 2 hours, we had ourselves the beginnings of a fishing tournament! Fish to Fight ALS was born. The next week was so filled with planning and excitement, one of my dreaded days- June 19th, the day Momma passed- came and went without me noticing.

Process that for a moment. For the past 9 years, that has been one of the worst days for me mentally. This year, I completely disregarded it. That's huge...HUGE, for me! Which leads me to this conclusion, turning my sorrows into a productive project such as the fishing tournament is a good thing. A GREAT thing. Most of all, a healthy thing to do!

So, cuz-if you are reading this, THANK YOU! You helped me in so many ways by just being that push! THANK YOU THANK YOU THANK YOU!

WHAT A YEAR!

Riverbank music video-Jeff Bates

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.