Updated: Mar 16
Grammar checkers beware because this will be a place that will send you into a spiral. Consider this your warning and just enjoy the show!
I started looking back into old Facebook posts and the memories come flooding back, but I decided that is not where I want my story to start. I want it to start where I am today, who I am today, 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 fulfil their purpose earlier than others which is why they called home at a younger age than others. Everyone has a different purpose and everyone's purpose takes a different amount of time to complete.
I started thinking about Ton's purpose, his life, his time here and what I had learned in the last few years and life changed. I started 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 and that was to help those who now also HAD to learn those same things.
ALS is not normally something you grow up knowing you will end up having, only about 10% of ALS cases are familial cases meaning that there is a common characteristic. That leaves 90% of cases feeling exactly as my family did that day as we left a doctors appointment knowing that Ton had a terminal disease that would forever change our lives. ALS patients (or pALS) are typically given 2-5 years of a life expectancy after they are diagnosed, but what a lot of people forget about is that their fam ily, their friends, their loved ones are also given a life expectancy but theirs ends with a terminal disease that lives with them forever. While one day their loved one will pass away, they are left with the terminal disease of loss forever stuck in their heart.
I remember feeling extremely alone, that no one would understand what I was going through, what a life surrounded by a terminal disease felt like. I knew in that moment I wanted others to know they are not alone. 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 too are part of that club, please know that I am here.