I am Morgan Geniviva
a family member of someone we've lost to ALS,
living with ALS,
someone who cared for a person we've lost to ALS
I hate that I didn’t get more time with my dad but I am thankful for the memories I have with him and the person I am because of him.
I was always a daddy’s girl growing up. I wanted to do whatever my dad was doing even if that meant waking up at the crack of dawn to go fishing or spending a beautiful day doing yard work. One of the hardest days of my life was the day my dad told me he had been diagnosed with ALS, second only to the day I lost him in September of 2018. There are a lot of harsh realities that come with losing a parent – like all of the big events they’re going to miss in the future – birthdays, your wedding, the birth of your children. I get angry when I think about all of the future moments with my dad that ALS stole from me, but I know my dad would give me a hard time for dwelling on something I can’t control instead of cherishing all the memories of him that I am so fortunate to have.
Having a parent with ALS forces a child to grow up a lot faster than most of their peers. My dad was diagnosed my sophomore year of college, and so I spent every summer after that at home helping my mom take care of him. I moved home after graduating from college in 2018 and I feel so fortunate that I was able to be there for him in his final months however, I had to watch the strongest man in my life slowly lose the ability to walk as well as perform everyday tasks like showering or eating on his own. Our relationship had a complete role reversal in which I became the one taking care of the man who had been taking care of me my entire life. Even though ALS took away his ability to feed himself and get in and out of bed on his own he refused to let it take away his positivity or his sense of humor. I will never forget the day when my mom and I were transferring him from his chair to a shower chair and he slid off the chair between the wall and the shower. After hours of frustration and multiple failed attempts at using a Hoyer lift, we finally got him back into his chair and he looked at me, smiled, and told one of his signature corny jokes. Watching him fight this awful disease with everything he had taught me so much about strength and has shaped me to be the person I am today.
His progression was slow and so I was able to have 3 more years with him after his diagnosis, a luxury that many families don’t have as ALS often takes an individual more quickly. He taught me so much about compassion, hard work, (and most importantly–cracking jokes even if you’re the only one laughing) and these are lessons I will always carry with me. I hate that I didn’t get more time with my dad but I am thankful for the memories I have with him and the person I am because of him.