Day 6: “Lydia”

Day 6 Thursday, September 24th

Cinnamon Pass to Lake City (17.1 miles)


Dedicated To:

Anna Stevinson, Burlington, WI

Lydia Shaeffer, Burlinton, WI

Sebastian Mayen, Guatemala

Elijah Cloukey, Bowdoinham, ME


I could feel it was day 6.  I woke tired and questioning if I could do this another day. But… I didn’t have any option… I was going to do this and I knew once I started I could finish. Just had to take that first step. Vaughn and Marcus drove me part way back up Cinnamon Pass where I stopped yesterday with Tory, my mom and Sam right behind us in my truck. We winded through the aspens on the jeep road and I realized this was the first time that I have seen my route before running it. Up until now every step was new territory. The day before we had set up a Karin on the road to know where exactly I had stopped. It seemed like FOREVER to get to that point, which didn’t help my mindset as to how that day was going to feel.

When we finally saw the rock pile on our right, we turned the cars around, Sam and I jumped out, hugged everyone and off we went. I’m not sure I could have started without her this morning. She was feeling much better and chugged along with me for another 3 miles… she was getting tired and urged me to go forward… but then I find out she ran an addition 3 on her own for epilepsy…makes me tear up! As I took off on my own, I kept thinking, “Once you hit the pavement, it’s only 2.5 miles to the cabins, then only 3 more miles to town…then rest day!”

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This was the first day that my thoughts controlled me. I bounced from positive thoughts of how amazing it is to be running through the mountains to negative thoughts of how hard it is to be running alone to moments of clarity of how lucky I am to be running at all. I’ve read that while ultra running you will have aches and pains that bounce around from minute to minute and I experiences this that day too. One minute my left Achilles was aching, then next it moved to my right knee, the next to my left hip, then next my upper back… My mind was beating me.

Then all of a sudden, I see Marcus and Vaughn ahead of me telling me to stop and look ahead. 100 yards ahead in the shade of the aspen stood a moose…broad side on the right of road. I was awe-struck. It was a beautiful moment… a moment that for some reason brought little Lydia Shaeffer into my mind…and she stayed there until I got to the cabins 8 miles or so later.

When I hit the cabins where my crew was waiting… I sat and the dirt and started crying and explained that Lydia carried me through. Lydia Shaeffer and her best friend, Anna Stevinson, both from Burlington, Wisconsin are two adorable little girls who have both battled epilepsy. On May 11, 2014 (Mother’s Day that year) the world lost an angel… Lydia died of SUDEP (sudden unexpected death of epilepsy) at the young age of 7.  She had a seizure in her sleep and didn’t wake up.  Anna lost her best friend. I will go more into this at some point in the near future, but what is so sad about this story is that Lydia was on a waiting list to get medicinal marijuana in the form of CBD oil. Anit-seizure meds didn’t work for her…she was just patiently waiting for the one thing she and her family knew could help. There is so much proof in CBD oil helping control seizure activity, yet it is still illegal in most states. In Wisconsin, they had just passed the law one month before Lydia’s death, but Lydia didn’t get it in time. The law was revisited shortly after and renamed “Lydia’s Law”. On this day, Lydia and the strength this young girl must have possessed carried me through…all the way into Lake City, 3 more miles up the road.

Pictured Left: Precious Anna who is now in second grade and loves “eating healthy” and is playing flag football this year.

Pictured Right: Lydia… the angel that I never got to meet but hold dear in my heart.

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Once in Lake City, my team and the Lake City locals made a small dream come true. In the middle of my run, I passed Tory and said…”I want gluten free pancakes”. I knew in my heart there was no way we would be getting GF anything in Lake City (SMALL town). However, once I crossed the Henson Creek Bridge in town and called it a day at 17.1 miles… Pam announced that my special order pancakes were on their way. We headed to the cutest little restaurant called Poker Alice owned by Steve and Linda. Turns out Pam came into town and asked if they had GF pancakes and explained what we were doing. Linda said, “We don’t even make breakfast, but I’ll tell ya what… If you go get the ingredients we’ll whip you up some GF pancakes.” And they did just that… in fact we had about 12 GF pancakes between all of us (I ate 4 of them!!!). When we were headed out, Steve handed us a generous donation to the cause. We asked where Linda was and he said she was upstairs on oxygen. Turns out she was just getting over a bad bout of pneumonia and he told her she could make the pancakes if she promised to go upstairs right afterwards. People are so amazingly kind. Steve and Linda, those pancakes made the end to my first week (123 miles in) complete! Thank you!

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Now… a day off!


Lessons Learned:

  • Little girls have the power to help Move Mountains! Thank you Lydia and Anna.
  • Small things make the biggest difference in life (ie: Seeing the moose, GF Pancakes)

5 thoughts on “Day 6: “Lydia”

  1. The thought of Lydia’s mom losing her beloved daughter brought me to tears. I absolutely could not bear such a thought. You make me so proud I can’t stand it. Your stubbornness, which made me crazy when you were a youngster has translated to determination and fortitude in the most inspiring and beautiful woma I have ever known. Love you so much it hurts.


  2. Thank you for writing about my Lydia and Anna. It moved me to tears to know my sweet girl pushed you to keep going – all the way from the heavens. As one of the many mothers pushing for CBD oil in Wisconsin, you are right – she never got it. Not even to see if it would work. Her epilepsy beat her. It took her from us.

    However, I’m so glad she got you through the pain. Through whatever seemed to want to halt you, the pains that ailed you, well, I’m just glad you channeled her strength she carried for 7 years until the Lord took her. She was amazing and obviously still is.

    Keep going. Know you’ve got an angel looking over you and proud of what your doing. Thank you!


  3. Dear Jenny,
    I’m drying my tears now after having read of your emotional and physical trials in this long journey, and the inspiration you found recalling the lives of those two precious little girls. Anna is my granddaughter, and her disability is a daily concern for me. I can’t tell you how grateful I am for your determination and endurance in this strenuous endeavor as you attempt to bring awareness on behalf of those afflicted with epilepsy. God Bless You. Cindy Vana


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