“My dear father who has always been devoted to his 5 daughters, 14 grandchildren and 3 great grandchildren was diagnosed with ALS in October 2016. It is a fast progressing disease that has robbed him from walking, talking and many daily tasks we take for granted. This video is my 2-year-old daughter, Zoey, loving on him even though he can’t play with her physically. She still manages to find a way to be with him. She is holding onto him tightly. He can’t move his arms, just his fingers to move his wheelchair around. She loves her grandpa, and love always finds a way. Love conquers all, even through this debilitating disease.
Before this disease, you could see him picking up his grandchildren from school, taking care of them during the day and even taking them on vacation with him. As a young girl, I remember him dancing and being silly with us. He would take care of us when we were sick and take us to our doctor appointments. He would watch and record our dance recitals. One time he danced in a recital to ABBA’s ‘Dancing Queen.’
As a young high school graduate, he enlisted in the Navy. He served proudly in the Navy and fought in the Vietnam War. After his time in the Navy, he worked at Becton-Dickinson as a field service engineer. He retired in November 2006. In honor of my Dad, one of his customers, M.D. Anderson, named one of their Cell Sorter machines after him. After his retirement, he kept himself busy with his 5 daughters and his grandchildren. He and my mother, who have been married for 43 years, would enjoy their retirement together by going on cruises and seeing the world. My parents took me and my sister on many cruises. They also took my nieces and nephews on vacations. We were enjoying the good life.
It wasn’t until the summer of 2015. Something wasn’t right. It took a long time for him to be diagnosed. We had no idea what was wrong with him and the doctors did not know either. He tripped over a throw rug at on of one of his daughter’s front door and fell on his face on her doorstep. That was the start. He then had trouble walking and eventually had to walk with a cane. The cane wasn’t good enough and he had to use a walker. He was walking with a walker by the time he was officially diagnosed.
The diagnosis was not an easy road. One doctor thought he could fix his problem by operating on his knee. My father didn’t want to do that, it seemed like a very risky operation to have on the knee. He finally saw a neurologist and she made an appointment with Methodist Hospital. My parents had to go there for 3 consecutive days and do several tests. It was October 31, 2016, that they finally diagnosed him with ALS. Many of my family members were in complete shock and were in denial this could be happening to our dad. Not our dad, our sweet, loving, and caring dad. All of us could agree, how could this happen to someone like my dad, someone who would give his shirt off of his back. Someone who would put others before him. Honestly, when my sisters and I received the phone call that he was diagnosed with ALS, we knew it was bad but we didn’t truly understand the depth of the journey we were about to take. The older grandchildren, who range in age from 22 to 10 years old, are devastated because they remember him playing with them. Seeing him in this wheelchair breaks their hearts but they still manage to help him out, like laying him back in his chair or feeding him since he cannot lift his arms.
We all take turns helping him. Especially his daughter — my sisters and I make dinners for him. Nutrition is key in his treatment. ALS burns a lot of calories so it is important to have a good fattening meal. My sisters and I will wipe or scratch his nose, brush his teeth, wash his hair, shave his face, clip his nails, clean out his ears and wipe his eyes. We all make sure he is comfortable and and it helps his confidence come back. Every time we give him his beauty treatment, he has the biggest smile on his face that I will always hold onto forever. We have had many fall scares because his body is not strong enough to hold him up anymore. My husband or my brother-in-law has driven all the way there to him to help him up. He is beyond grateful for their help.
Once when my brother-in-law and husband were at work, my parents had to call 911 to help him up. My father had to explain to the EMTs that he cannot move his body at all. They had no idea how to handle someone with ALS. I couldn’t believe they didn’t know. My parents got a Hoyer lift to make easier transfers to the toilet and the bed to avoid another moment of laying on the floor for hours for help. My mom is a very petite lady. If she could help him up, she would. The younger grandchildren/great-grandchildren, ages ranging from 5 years old to 2 weeks old, have always known him to be in this condition. However, they still love on him regardless of his lack of mobility. He has never held his new grandson Gabriel, born May 30, 2017, or his granddaughter, Layla, born on April 30th, 2018. or his new great grandson, Elijah, who was born June 18th, 2018. I know it kills him because he was always heavily involved with his grandchildren.
I asked my nieces and nephew what they thought of his condition. This is the first time they have opened up about what’s been going on with their grandpa. For many of them, it took a lot to open up because it was such a tough subject to talk about.
Alyssa, age 22 says, ‘Grandpa is the center of our family. He is the glue that holds us together. He has always been there for us and was always very helpful. Before he was diagnosed, he would was able to help us and could always keep a smile on your face. Watching him go from being able to walk on his own and be able to speak clearly and effortlessly to being strapped to a chair and having to take hard breaths to get one word out; it is truly heart wrenching.’
Brittany, age 20 says, ‘He always made us laugh and took care of us whenever my mom needed it. He was a really giving person and he doesn’t deserve this, but obviously God is doing this for a reason. We may not know that reason, but it’s what God wants. He was the always the life of the party when we would all get together.’
Robert, age 18 says, ‘All my life he has stood up for me, he has taught me what it is to be focused and to have discipline. He was hard on me because he knew I could be much more and though I was stubborn, he would be there for me. He means the world to me…. He is my personal hero.’
Jessica, age 13 says, ‘I think there is a chance and a light at the end of the tunnel. Just because there isn’t a cure yet doesn’t mean we need to stop here. I would do anything to see my grandpa happy again.’
Ryan, age 12 says, ‘I didn’t know what ALS was or how it would effect him or the family. It makes me feel really sad, because he can’t be active with me anymore. I am scared to lose him.’
Kaelynn, age 10, says, ‘I am mad he has ALS because it took away my grandpa. He can’t move.’
The youngest that can talk, Vanessa, age 5, says, ‘His voice sounds weird, I don’t understand him.’
My 2-year-old daughter Zoey doesn’t speak yet, she just loves on him. She doesn’t understand why he is the way he is. My nephew, Tristan, who is also 2, doesn’t understand why he is in a wheelchair. Zoey and Tristan just hold onto him tightly for a cherished ride around the house.
The younger ones, Ryleigh, Natalia, Gabriel, Layla and Elijah, just smile at him. He talks to them and loves on them to the best to his ability. This usually involves holding the little ones close to his face so he can give them kisses or they can give him kisses. My father always had that effect on his grandchildren. They are magnetically drawn to him. Nowadays, my father continues to battle this debilitating disease. He is now having a hard time holding his head up. His words are mumbled due to his ALS. Every birthday or holiday we have with him, we treat it as it was his last because you never know. Currently, there is no cure for this disease. Only an FDA approved pill called Riluzole. It only slows the progression of the disease. It is not enough to stop this disease, however I have never met someone who has a spirit as strong as his. I remember the ice bucket challenge and didn’t think much of it at the time, and even though it brought awareness to the disease, it did not paint the full picture of how it effects someone and their family.
When I talk to people and say my father has ALS, not many of them understand what it means. They just know it is bad. My father is wheelchair-bound and is completely dependent on my mother to take care of his daily needs. He can’t feed himself, and he is slowly fading away as time goes by. It is truly hard to watch your beloved father go through this journey. Their mouths drop when I explain he can’t do anything for himself. The worst part is, the disease doesn’t have any effect on his memory or cognition, so it’s like watching yourself get weaker everyday and not being able to do anything about it. It has got to be complete torture to go through that. I truly believe it’s the love of his children and his grandchildren/great-grandchildren that he continues to fight the fight. He doesn’t want to miss anything like someone’s birthday party, a graduation ceremony or a new baby being brought into the world, and with our big family, there is always something going on. His family means the world to him. He means the world to our family. A guy like my Dad is one in a million. We all love him and hope the best possible outcome for him. He deserves nothing but the best care and treatment this world has to offer.”
This story was submitted to Love What Matters by Heather Salinas, 30, of Houston, Texas. You can learn more about this family’s journey with ALS here. Submit your own story here, and subscribe to our best stories in our free newsletter here.
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