Currently...

This was supposed to be the post you’ve all been waiting for. You humored me with my first-post ramblings, you were maybe glad to hear a little about the AT hikers, but really, you would all like to know what in the world has happened, what we are facing, how life looks, how you can help. My goal today was to answer your questions and try to fill in the gaps, so I started a post last night with all kinds of grand intentions. I thought I could quickly summarize where we are and how we got here, so you would all have a baseline picture in your minds. Two hours and 1400 words later, I hadn’t even finished talking about the first clinic appointment. So, I’m writing this new post with the basic current updates, and next week I’ll try to publish a SERIES of posts about how we arrived at this point. Bear with me. Concise is not my middle name.

As I mentioned yesterday, Wayne and our two oldest kids are hiking the Appalachian Trail for the next week and a half. I got pictures and updates around 9:00 in the morning yesterday, and then I did not hear another word all day or all night, so it was really good to get this text at 11:00 this morning:

“No reception last night. Knocked out about 9 miles yesterday. Tired but still putting out. Miss you.”

Boy howdy, do I miss him too! But I am so thankful they get this opportunity.

So, as far as the day-to-day, I will be a little out of the loop for the next week, but I can give you the run-down of what we experienced this past week.

Falling asleep is a lot harder for Wayne, because his muscles are continually twitching. I’ll attach a video of his arm here, so you can see what I am talking about, but it is literally over his entire body, legs, chest, back. We are thankful the twitching is not in his face or head yet.

Lying next to him at night, I can feel the twitches, and I cannot even imagine what it must feel like for him as he tries to relax and get his mind off the doings of the day. I would greatly appreciate prayer for those moments, for him to have restful, peaceful moments of falling asleep.

The muscles in his arms and hands have weakened, and it is harder and harder for Wayne to do normal tasks. He cannot lift a full glass to drink, but needs to use both hands to bring it to his mouth. It is just too heavy for him. He also holds his fork in a new way, because he cannot grip it normally, and still sometimes drops his utensils while he is trying to use them. Apparently there are “weighted utensils” that some ALS patients use, and both of us have been ironically commenting about how adding weight would make things easier; guess we need to research that.

The hardest moment for me this week was when I went to open a jar, and it was too tight, and I started to call out for help. “Hey, Wayne, could you….?” but caught myself, realizing he would not be able to help me. Our neighbor’s daughter was near me in the kitchen, and said, “Why don’t you ask Mr. Wa……oh.” She looked troubled, and turned away. It was heartbreaking to me that all of us have these expectations of his ability, and he sees our expectations, and he cannot meet them. We all want to depend on him, and he wants to “put out,” as he says, but his body will not let him.

Another friend jokingly said this week, “Just tell those muscles what to do. Tell them who’s boss.” But that is what Wayne has always done. He is the kind of guy who “puts out” until his heart bursts. You tell him to do something and he does it, and then some. He knows how to slow his own heartrate, for Pete’s sake, so that he can get a more steady aim with his gun. He has bossed his body beyond anyone I know, being a Recon Marine, building his own business, providing for his family, caring for others. And now his body isn’t responding. It is probably one of the hardest things anyone could imagine for him to face.

Many people have asked me, “How is he working?” The answer to that question is, in a lot of ways, he is not. Our days have been full of phone calls and video appointments, paperwork, re-working schedules and budgets, and so many other unexpected tasks. When he does go out to his workshop, he usually takes one of our kids with him, to be his hands. They are learning a lot from their dad, and they are blessing him by enabling him to keep the business going. Another prayer request is that we would have wisdom in how to handle the business in general. We are asking ourselves whether we should hire on some help, how much we should utilize the kids, whether it is financially sustainable with Wayne not able to do the manual things himself. His mind is amazing when it comes to mechanics. Astounding. So there are still ways that he can offer something of value to the world, and he really wants to do what he can. We are still navigating how that would work. There is a possibility of him just pausing work so we can travel some, make some memories, see family, explore our country together; we are still thinking through all the options and trying to discern what is feasible.

And for those of you who are wondering how my heart has been doing with them gone, it is much better today. A dear friend texted me last night with encouraging words, and it reminded me where to fix my gaze. I love that the word encourage literally means to put courage into someone. Thank you, dear friend. To all of you who are continually encouraging us in this season. We are so loved.

Until next week.

Audrey