Grammar checkers, beware because this will be a place that will send you into a spiral. Consider this your warning, and enjoy the show!
I started looking back into old Facebook posts, and the memories came flooding back, but I decided that was not where I wanted my story to begin. I want it to start where I am today, who I am today, and what has led me here typing gibberish as my oldest son sits next to me on his Nintendo Switch and my youngest son builds and knocks down blocks while watching Paw Patrol in front of me. #reallife.
After Ton passed away (get used to me calling my dad Ton- that's just what I do), I never thought I'd dive so heavily into the ALS community. Honestly, I never wanted to hear those three letters ever again.
One day I was scrolling #TikTok as most 30(+)-year-olds do while stuck in their house during the umpteenth hour of being quarantined with two kids, homeschooling a kindergartener, and just hoping your #Costco boxed wine doesn't run out anytime soon. I watched a video from a hospice nurse where she explained a conversation she had with her hospice Chaplin that hit me like a ton of bricks. The Chaplin explained to her that they believed everyone has a purpose on earth, and some people fulfill their purpose earlier than others which is why they are called home at a younger age than others. Everyone has a different meaning, and everyone's purpose takes additional time to complete.
I started thinking about Ton's purpose, life, time here, what I had learned in the last few years, and how life had changed. I began to think of my purpose. I had a genuine lightbulb
moment when I started to think of everything I learned in the last few years, from average joes to hospice patients. Life was different. I was different. I felt like there was a reason behind learning everything we HAD to learn: to help those who now also HAD to learn those same things.
ALS is not usually something you grow up knowing you will have; only about 10% of ALS cases are familial, meaning a common characteristic. That leaves 90% of patients feeling like my family did that day as we left a doctor's appointment lost.
Patients (or pALS) are typically given 2-5 years of life expectancy after diagnosis.
Finding out that Ton had a terminal disease that would forever change our lives.
Many forget that their family, friends, and loved ones are also given their version of a terminal illness that lives with them forever.
While their loved one will pass away one day, they are left with the terminal disease of loss forever stuck in their hearts.
I remember feeling incredibly alone, that no one would understand what I was going through, and what a life would feel like being surrounded by a terminal diagnosis. I knew I wanted others to know they were not alone at that moment. I am here, loud and proud to be a lifetime member of the club that you don't sign up for but, unfortunately, one day, become a permanent member of the club that YOU ARE NOT ALONE in. If you are part of that club, please know I am here.