"A Child of ALS" Chapter 17

The day I heard the news that my daddy had ALS, my heart dropped,I couldn't breathe and I started to cry.

I knew, though, that I had to be strong. I knew the news was just the beginning of the rest of his life.

As I sit here writing about my dad and our experiences thus far with ALS, I wonder, what do I even write about? How much it hurts to watch my very independent, brilliant, busy-body father melt into a shell of himself? How much it aches in my chest to imagine how frustrating it is to be stuck in his failing body? How about how much I cherish this man who adopted me as his own while having such a complicated history with my own biological father? Having my Daddy David was like drinking cool water in a drought. I was - and still am - proud to be a big Daddy's Girl for life. He's the best guy, so why wouldn't I be?

My memories of our first encounters and first few years together are fuzzy due to the fact I was only 2 when we met. I barely remember meeting Mr. Monkey the first time, but I do remember thinking my dad loved monkeys and always trying to find one for birthdays or Father's days. What I do remember is my dad always being there and making an effort for whoever needed him... literally always. From the ripe young ages of 9, 6 and 4, my dad has always instilled in my sisters and I a sense of responsibility and duty to do more for whoever we can. We'd be out there together at the crack of dawn with trash bags in our hands, cleaning up the sides of the road or helping organize Toys for Tots with the Spouse's Club. He'd explain why we are doing this, and how it is beneficial to keep doing it. He coached our teams, attended our recitals, and encouraged our growth. Hell, 3.5 years ago I called my parents at 27 years old (like a good millennial) asking if I could come home for a bit to get myself back together. I spent a few years in the California restaurant industry, which was my passion, and desperately tried to make it work but I was a flat broke stereotype with a party girl problem. I had been watching my parents from afar doing volunteer work, visiting estate sales, and enjoying life, and that's what I wanted.

When the decision was made to move back home, my dad flew all the way to California to pick me up so he and I could drive my teeny tiny car 3,069 miles to Virginia. It was the two of us, my two pets, my guitar, merry plants and records stuffed in the car making our way across the country. We ate questionable food at questionable road side restaurants, visited museums and landmarks, sang & danced so many songs from my childhood. Honestly, it was one of the most fun adventures I've had as a young adult, something I cherish and something we reference to this day.

As I type this, I lay in my parents bedroom with the sound of my dad's BIPAP machine wheezing in the background, my mom 'not' snoring, and a tv show keeping me company. Some of these sounds are familiar, some of these are brand new and difficult to hear. One of my favorite memories growing up was hearing our parents laughing and chatting in bed on Sunday mornings - that was until us kids ran in to create the biggest and squirmiest cuddle puddle. We'd all pile in and talk about what we wanted to get into for the day, what we were going to have for breakfast and who was in charge of cleaning which bathroom. Though our morning chats have changed into asking dad how he slept or if he'd like one of us to take him off BIPAP or help clear his lungs, the one constant is the love and sense of duty we all have for each other.

ALS has changed a lot of how we interact with our dad. We can't jump on him in bed, hang off of his arms like monkeys or take cross country road trips. Just last year, my dad and I participated in a ruck march to celebrate and commemorate the fallen female soldiers we've lost since 9/11. We split the miles up amongst our team, but towards the end the arch of my foot had fallen and I just couldn't hang any longer. So, what does my dad do? He picked up his 29 year old daughter, put me on his back and carried me the last 2 miles through the city streets of DC to the memorial site. That was just last September. Three months later we were skipping around the Christmas Fair in DC and falling hand in hand on the ice skating rink.

That was just a year ago, it is mind boggling how fast Bulbar ALS has taken so much from my dad and how much we've been tested in the lessons he's taught us. Instead of my mom holding onto my dad on the ice skating rink for support, he's relying on her and the rest of us to help him out of his chair, following behind him on his walks through the house just in case.

All of the beautiful stories of laughter, Christmas magic, and triumphs are peppered with learning curves and life lessons. From making sure I knew my multiplications as well as I knew the words to every Disney song; to teaching me how to apply for a job, know my worth, and how to be financially sound. When I think of being a successful adult, I don't think about having mountains of money or power. I think about being a kind human who shares said mountain of money, takes time to make memories with my children, and spreads joy and music. I think about how much I heard from anyone who has met my parents, how fun they were, or how much they enjoy spending time around them.

During the Walk to Unlock ALS recently, I had the pleasure of meeting colleagues of his and seeing them moved to tears with gratitude for his mentorship and friendship. Shaking hands with one of his soldiers who had nothing but kind words to say about him and was there to support, because that's what he put out into the world. I know the lessons he took the time to put into words, the actions he effortlessly acted out will continue to radiate onwards because that's what he has sought out to do. I know that every time I pick up a shovel to help someone else, or every tear I let my shoulder catch will be because this is how Dad did it. There is nothing in this world that can measure the pride and gratitude I have for being David's daughter. Nothing can touch how much love he poured into us, so much so that I am overflowing and have plenty to share.

I can't tell you how much I miss his voice, hearing him sing to my mom or laugh at his own dad joke that made us all groan in disapproval. If I could go back in time I would trade a year of my life to experience even just one Sunday morning making pancakes while listening to Prince songs we were too young to understand, I would in a heartbeat. Even without a 'voice' to speak the words he has to say and share with others, he will always find a way to speak his mind and share his thoughts.

This task of writing a chapter for my dad's blog has challenged me in different ways due to having to put words how I feel about my dad in general let alone the situation. But now that I am moving into the next adventure of family planning with my husband, I will continue to spread the joy and laughter my daddy has. This is our family heirloom, the servant's heart to provide for those who cannot, to spread awareness of this aggressive disease, and to love selflessly and endlessly. ALS may have taken his speech, but it will never take away his voice or message. 

WWBN,

Corina