Off on an Adventure

Hiking the Appalachian Trail with ALS

Yesterday morning at 4:37, Wayne and our two oldest kiddos headed out the door to drive north for their fourth annual trek on the Appalachian Trail. They have hiked about 100 miles each year, spending 10 days in the mountains with two other dads and their kids. Last year’s hike was cut short by Hurricane Helene, but this year’s challenges are a bit more personal.

The night before they left, we gathered in the living room as a family to read some poetry, a chapter of our current read-aloud book, and a Proverb, but also, to answer the question-of-the-day, “How would you describe yourself?” When I said, “Cheerfully optimistic,” our oldest daughter rolled her eyes and grinned. “Oh, really, Mom? Why in the world would you say that?” But through this journey, I have begun dealing with physical symptoms of anxiety. As I sit here typing this, my heart is pounding erratically inside my chest. I keep checking my phone to see if there are any updates (futile, as Wayne almost never turns his phone on during these trips). I look back at pictures from past years and take deep breaths. I have never dealt with physical anxiety before, and it is so strange to me, this heart racing, stomach churning, inability to eat. And because there are not always direct thoughts in my mind to battle, it has been a disorienting and humbling experience. To those of you out there who deal with this on a daily—even hourly—basis, my prayers are with you. This is tough.

But enough about me. Y’all are here for Wayne. So as I mentioned last time, my plan for this blog is to share the up-to-date news with you, but also to relate our experiences of the past few months, and to reflect on some ideas more deeply from time to time. (Forgive me if the data points turn philosophical; I just can’t help myself.) For today’s post, I wanted to share more of a current events post, giving you the scoop on The Big Hike.

As I said, they left around 4:30 a.m. yesterday. They drove up to their start point, unloaded the gear and most of the people, and then sent one dad to deposit the van at their endpoint. They hiked around seven miles to their first shelter, and the third dad got a ride back and rejoined them at midnight. The “conditioning hikes” we took as a family these past few weeks have paid off, it seems. Wayne was constantly pushing himself, using hiking poles to see if his arms would be able to bear that weight, flexing his hands and fingers, adding a little weight to his back. He texted me a few pictures this morning and said that it was rainy, and that his legs are very tired, but he’s making it.

Wayne has always spearheaded the hikes, but this year he was not even sure if he would be able to go. In fact, his evaluation of his ability to carry weight and hike long distances is one of the ways his degenerating muscles became super obvious and prompted him to seek help. The other two fathers kept encouraging him to try, that they would make it work, but he could just tell that he was getting weaker and weaker. When we went to the ALS clinic at the beginning of the month, that was one of his first practical questions for them: is this hike reasonable and prudent? They encouraged him to go, ”but you aren’t going alone?” they quickly followed up.

He said, “No, we actually have a PA (physicians’ assistant) going along—and a realtor; he’s useless.” But in fact, I think that realtor is just as essential. As they were loading up in the van to leave, and I was feeling the weight of it all, I quietly said to him, “Take care of him for me, will you?” and his sarcastic joking response cheered me up and made me laugh. I know that when things get tough, these men will take care of my man, pushing him, laughing at him and with him, carrying the weight, and all of it with dignity and honor. I am so grateful.

Our oldest daughter has always been in charge of the meals for these hikes, so our dehydrator (thanks, Dad Haas!) has been going nonstop for the past three weeks. There are meals of homemade beef stroganoff, tomato soup, and fettucine alfredo making their way north in the backpacks today. Our son has mostly been busy helping Wayne in the shop during the days while Naomi is cooking, but at the end of the prep week, they both pitched in with all the packing.

Poor Wayne weighed all the supplements he had to bring along (more on that tomorrow), and I think it was over 2 pounds. The volume is even more when you take into account that they literally carry only 1.2 pounds of food per day for all three of them. He is being such a good sport with swallowing all the pills. That liquid fish oil, though…. He said to me the other day when I brought him his spoonful, “Death cannot come fast enough.”

It is hard to think that this could be his last time hiking the AT with our kids. We are still hoping and praying for healing, but of course, it is a reality we are facing. Wayne and I have both been pretty nervous about this hike, especially as his condition has worsened so quickly in the past few weeks. Before now, mostly his hands and arms have been affected. The plan was for our kids to divide most of his carrying weight between them, which would free him up, since his legs have mostly been fine. But recently, his legs have been twitching a lot more, and he has felt so weak and tired. Please pray that he is able to get into a stride and really enjoy this trip. Pray for safety for all of them, and for wisdom and discernment as they navigate new territory, physically, geographically, and emotionally.

And I’ll keep you posted.