Hello Everyone.... I wish this was Chuck giving you an update but we all know that is not possible right now. But I have no doubt we will see him again in time. I apologize that this has taken me so long to respond. I have thought long and hard on how to close this chapter of his journey and the best way to explain the ending, and that is best described through the eyes of his oldest daughter... Emily is a Senior this year and had the opportunity to write about her father leading up to his final days here on earth.... She was obviously blessed with her fathers gift to write in a way to captivate and relate to the audience. Even though is journey has ended here, he is NOT DONE YET.... The girls and I will be finishing his book and getting it published, honoring him in everyway we can. If it helps just one person, that is enough for us... Thank you everyone that has followed his journey, has and continue to support our family in so many ways We are blessed beyond words and surrounded by wonderful people. God bless and enjoy the read....
When the Music Died
We associate the sky with many things. Some think that's where heaven is, some even look up when talking to God . I would be lying if I told you I didn't fit that stereotype. I’ve actually been looking up at the sky a lot recently if I’m being honest. The best time to do so is when it’s night. You can lay on your back and look up at the stars without squinting because the sun is not there to get in your eyes, but best of all it’s quiet. Night is when the city sleeps, but not me, I’m staring up at the stratosphere. The peaceful night sky. That's when I talk to him the most. That’s when I think he can hear me best.
My dad was diagnosed with ALS in the summer of 2019 during the month of May. I just got done with my sophomore year, and I was headed towards being a junior in high school. The way I coped and handled the news is a whole other story in itself. My family was told that this disease would take everything away from my dad and ruin our lives. Despite the ever so “uplifting” diagnosis, I still tried to have hope. “Maybe he won't be another statistic he can fight this.” I thought to myself. Well he did fight, he fought it for as long as he could, and he fought hard.
August had just started and it wasn't much more than a year ago now when my dad was first diagnosed. Last August of 2019, I remember him still working as a Realtor. He was still driving, walking, and even carrying a backpack around. The only thing that he really struggled with was movement in his hands. It was hard to write and open water bottles but he still pressed on. Now we are sitting in 2020 and everything in him seemed to depreciate. The disease had fully taken over him. He was now wheelchair bound with little to no function in his arms. He could not feed himself and would have trouble swallowing due to lack of saliva production. The thing that scared him the most was his breathing. The muscles around his lungs had little capability to move, so they just weighed on his chest, making it difficult to talk and even breath. I was watching my dad suffer everyday, and I was at a loss for what to do. It's hard to keep someone else's head above water while you, yourself, are drowning as well.
My family had made the decision to call in hospice. We had an amazing nurse by the name of Bon who was assigned to be at our beck and call anytime we needed it. She had even come over to our house at 4 in the morning just to make sure my dad was getting enough oxygen to his brain. Applying for hospice was the best choice we had ever made. I could tell that a huge weight was lifted off my dad's shoulders when they came in, because my sister, mom, and I finally had help. He started to let go, because he knew that we were all going to be taken care of.
Despite the newfound care of our hospice nurse, his health continued to decline everyday. Hospice has one main goal when they come in, and that is to make sure that the patient is as comfortable as possible. My dad was not comfortable at all, so he was given a very small dose of Morphine to help with his breathing and sleeping. Seeing my dad on morphine was hard to watch. At this point, all my dad wanted to do was sleep, and from there on out he was stuck on bedrest. As he slept, he would start talking in his sleep. He would talk to people who weren't there, and I never knew when I was having a real coherent conversation with him.
My dad could not be left alone when he slept, so everyone in the house would take turns staying in the bedroom with him. The sound of his Bipap machine constantly pushing air in and out of him would repeat in my head and stay in my ears even after I left the room. I would watch him as he slept, and I could still see the pain in him. I witnessed the way his fasciculations would shoot across his whole body like lightning, never letting him rest. I saw how hard everything single breath was to take, even with the assistance of the bipap machine. I looked at his arms and hands, I saw how small they had become. The hands that had once played Stevie Ray Vaughan’s, Little Wing, on the guitar over and over again, where now just a small frail structure of what a hand could be. The appearance of his bones through his skin and whatever muscles he had left, was too extremely apparent. As I looked at my dying father, I realized that he had become someone unrecognizable to me, and it broke my heart.
At this point we knew that his current state was the beginning to the end. My mom spread the word to friends and family hinting to come and say their goodbyes to him. We had a full house from this point on. People came over to sit with him and then just hang out afterwards. There was always plenty of company, which made it hard to cry because I felt like I needed to be strong for them too. Everyone who came in, I had to lead downstairs to where my dad was staying. Every time they came back out, the look of sadness overcame them. I began to feel like there was a monster in my basement. Everyone was horrified with the sight of how bad my dad had gotten, and I was too. It got increasingly difficult for me to walk into his room with every day that passed. My split level house was once a place where life flourished now it was full of people watching a life end.
Our hospice nurse Bon was very good at her job, and she has seen a lot in her day. She told us that in the process of someone passing, they sometimes hold on for the sake of others, extending their pain. “You have to let him know that it's okay to go he needs to hear that from you” said Bon. I had a hard time bringing myself to do that, because I don't want him to go. “It's not okay to go, I'm not ready for you to go!” I thought to myself. I put this off until the night of August 5th.
Most of our visitors from the day had left, so my dad's room was no longer filled with an audience. I walked in and laid right next to him, resting my head on his shoulder as lightly as I possibly could so it did not affect his breathing. I stared at him for a bit, trying to find the words as he slept restlessly and dozed in and out of consciousness. I knew that this world had so little to offer him anymore, and this wasn't a life to live for anyone. With tears in my eyes and a tension in my throat, I whispered to him “Hey dad, I love you so much. I will always love you so much… It's okay to go. I know you would rather stay, but it's going to be all better soon, but I know that you already knew that. It's okay to go. I'm gonna miss you so much, but it's okay to go.”.
He didn't respond, but I knew that he heard me. I wrapped my arms around one of his and nuzzled my head into his boney shoulder. I just sat there for a while, and then I prayed. My dad knew that the end was near, and he wasn’t afraid. Every time he would see us cry, he would just say in a light tone, “It's okay, I'm going to be healed soon I'm not going to have ALS anymore!” I prayed that he would be healed and for heaven to take good care of him. I wiped my tears, put my forehead up to his to say goodnight, and then I went to bed.
I don’t remember falling asleep, I just remember waking up. My bedroom light came on, piercing light into my eyes everything was blurry for a second. My vision finally cleared up just enough for me to make out my mom standing in my doorway. She broke the news to me, he was gone. The first thing I thought about was the last thing I said to him, and still to this day I can only wonder if he was waiting for me to tell him that it was alright to go. I didn't bust out into tears, I didn't scream, I just sat there in my bed. All I felt in the moment was numbness, all I heard was nothing but a high ringing, and maybe for a second I went blind.
It felt not that long ago when my dad was big, strong, and healthy. I swear he could have lifted the weight of the world at one point. I remember the days where he could throw me and my sister over his shoulders at the same time and carried us around while we laughed and tried to kick our way out of his grasp. How my dad went from that to not even able to open a water bottle on his own seemed to happen in a blink of an eye. I don't remember a definitive day where I had fully comprehended my dad had completely changed. It took until after he was already withered away to flesh and bone while wheelchair bound that everything hit me super hard. I saw he was no longer the same physical man who raised me.
When my dad was first diagnosed he had a hard time accepting the diagnosis. “Why me God? Why me?” is something that he would ponder restlessly. It took awhile for him to accept everything, and I don't know if he ever fully did. Although he was scared for his own life everyday, he was always more worried about me, my sister, and my mom. My dad knew what the outcome of all of this was and he was willing to prepare for that, but the only thing that he did not want to come to terms with was leaving us. “I’ll be saving a spot for you girls up there. I'm gonna see you again some day!” he would tell us.
I knew when I saw my mom in my doorway what the news would be, but no one can prepare for hearing the words in real life out loud. I snapped out of it and picked up my phone to call my close friend Katherine, and it wasn't until I had to tell her what happened that the tears really started to come out. It was 1 am and Katherine was at my house by 1:05, and I can never thank her enough for being there for me.
We made our way downstairs where a group of my family's closest friends were already gathered in the living room. Everyone was sad, but we were all there to support one another. My mom called the funeral home and pastor as we waited for them to show up, we all just talked. We shared stories, we laughed, we cried, we passed around tissues. I was overall distraught, but being in that room filled with everyone that I loved made me feel safe for the first time in a long time. Up until this point, I had not worked up the courage to go into his room to see him, and I thought that maybe I would not even go in there at all. Then our pastor showed up.
Pastor Jason is one of the most amazing people I have ever met in my life, and I trusted him with all my heart. Jason told me that he would go in there with me, and maybe it would help give me some closure. Despite the overwhelming fear that washed over me, I walked into the final resting place of my dad anyway. I saw my dad at peace. I saw someone who was no longer struggling to make any sort of movement. I saw my dad healed. My mother was by his side the whole time of his final hours. She told me that he woke up at 11pm thrashing around. Once she calmed him down, he looked her in the eyes and said; “I'm ready to go home.” and now he was.
When I think about my dad now that he is gone, I don't see him as someone who was in pain or had lost all of their muscle. I remember my dad as this toughened advantageous guy who loved with his whole heart. I remember him as a musician who spent hours and hours on the guitar. I remember him as the man who taught me how to drive. I remember him as my fishing buddy. I get to remember him as the man who helped me become who I am for the first 17 years of my life.
Everyone tells me about how they can see my dad in me, and that is the biggest honor I will ever get to carry. At the beginning of all of this, we were told that ALS will take away everything from you, and that's not true. It never took away the love. My dad was loved, and he loved with all of his heart. It never broke my family apart. ALS takes away a lot, but it never took away everything. Our house always seems quiet now. As quiet as the night sky, the same sky I look up at every night when he hears me best.