Walk for Hope. Walk for Help. Walk for Life.
Later this month, my daughter Emily will turn 17 years old. I can still remember the day I learned I was pregnant. Like many, I was “late” and so I took a home test. Negative. Weird. I was never late. A week later, I was still late and getting my hopes up. I took a second test expecting it to be negative, and was overwhelmed with excitement when I saw the positive. I WAS PREGNANT! And I knew instantly it was a girl. I was going to have one boy and one girl! As I was bubbling with excitement my mom called. I remember thinking - she knows! She can feel my excitement from 20 miles away - how does she do that!?! (We saw each other all the time and we’ve always been close). I even told my dog Mia - she knows! I answered the phone will a smile on my face. It didn’t last long. My day, my mood went from highest of highs to lowest of lows. My mom didn’t have some weird 6th sense I was pregnant. This call wasn’t about ME at all. My mom was calling to tell me that my dad was just diagnosed with ALS. Did I know what that was? I did not. She tried its other name: Lou Gehrig’s Disease. Still didn’t know. She used words like “degenerative”, “neuromuscular disorder”, “no cure”. Each word made my heart plummet further and further. I hung up the phone determined there was a fix, a way to get life back to where it was 10 minutes ago. I went to Google. Within minutes I learned my life would never be the same. My heart, so full of happiness before, was broken. I remember wondering: could my baby girl feel my sadness? Would these feelings I have hurt her? The emotions inside me were at war. I was pregnant! My dad was dying. It would be a cruel, horrible death.
My dad’s ALS was considered slow moving. It started in his hand with his fingers curling down. No pain but also no movement. It was not his dominant hand. He worked all day on a computer. The obvious answer was carpel tunnel. He was hard headed. So was I. I pushed hard for him to go to the doctor and get help. Surgery could fix this! He had a Grandson to play with! At first doctors were perplexed until they weren’t. Diagnosis: ALS.
When Emily was born later that year, she wasn’t the most smiley baby. As a matter of fact, it took a lot to get a smile out of her. She could and would stare stone faced at someone who was trying every trick in the book to get a smile and she wouldn’t. Sometimes it made me laugh. Sometimes it was embarrassing. Always there was a little voice in the back of my mind- did my sadness cause her to be born unhappy?
My dad died of ALS in 2007. He and Emily had a tight bond from the day I shoved her into his arms despite his worry his bad arm would give out and he’d drop her. I didn’t have time to waste. I needed to see him with her like he’d been with Nate - the Grandpa who came over and walked and walked the house during Nate’s colic hours, never losing his patience. I wanted her to know her Grandpa and have the experiences Nate had. They were inseparable. He loved her fire and spark even when he was on the receiving end of it. Now, Emily only has vague memories of him. ALS robbed them of years. If I had to say what my dad was best at, I’d say being a Grandpa. He was a different man. ALS took him away from what he was best at long before he got to meet many of his Grandchildren. ALS sucks.
Our battle with ALS was easy compared to many others. We were blessed that my dad’s heart gave out before the need for feeding tubes or ventilators. As a matter of fact he was at our annual family 4th of July party two days before. His legs didn’t work well. He struggled to swallow. He couldn’t hold his head up, but he was still there. Until he suddenly wasn’t.
My sister Brianne was the brave one who found the Les Turner ALS Walk for Life that first September after my father passed. She organized our team: Jer’s People. I didn’t want to go. I didn’t want to hear the letters ALS again. I didn’t want to see the disease on other people. I wanted to wipe it from my mind. Bree was the brave one. She pointed out its importance. She insisted we do it. And she was right. It was an amazing experience filled with hope. Many people diagnosed with ALS participate. They are heroes, fighting for themselves, and so so many are filled with a contagious hope that a cure can be found.
This year, on September 18th, the day before her birthday, Bree will lead Jer’s People for our 15th consecutive ALS walk. I have not walked every year. Moving to KC has made it hard. This year I plan to make a return to walk on this 15 yr anniversary. If Covid has taught me anything it’s not to wait for things to be easier because you may not get the chance. It’ll be a quick weekend trip home but well worth it to be part of this amazing experience.
If you’re still with me, thank you for reading! If you’re in a position to make a donation, I promise you…it WILL make a difference. At the walk they announce the totals raised so far and those suffering from this horrible disease get a first hand glimpse that there’s a real reason to hope. People care. Families struggling with this burden will hear - they aren’t completely alone.
I never asked to part of the ALS community. Frankly I wish I weren’t. But I’m here and I’ll support all the people who find themselves in this community with me.
I walk for Jer. ❤
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