and the journey begins…

Well, I’ve been told I have ALS. What am I supposed to do? Do I make a bucket list? Do I quit my job? Who do I tell? Why me? How did I get it? What does my future look like? The questions just kept pouring through my mind with the most taxing of all being – how can I stop the pain that I see in Amy’s eyes.

Throughout this blogging journey I’ll address these questions, but, for today, let me just share how those early days, weeks, and months went. One of the easiest questions to answer for me was that I wanted to tell no one. I’m a very private and fiercely independent person, seldom even telling Amy when I’ve hurt myself during one of my many construction projects. For me, this was going to be easy, but for Amy, not so much.

Not more than a week out from the diagnosis, Amy and I had planned a weekend away to see our favorite singer, Zach Williams, in concert with Mercy Me and Toby Mac. We had rented our preferred little house on the Rock River in Rockford, IL. Saturday morning, we woke and a took a drive south down the river to a great little coffee shop and bakery in a small riverfront town. At that point, we were both so full of pain, but for some reason I had sense of peace starting to settle in me. All I wanted was for Amy to feel the same thing. What could I say?

I’m not bulletproof, as most of my life I believed I was, and for now, that was OK. The rest of that morning, and all the way through the concert, I don’t think we let go of each other’s hands one time. A “bucket list” is something I’ve never been interested in. I’ve led a very blessed life, getting to see most of this country and a little of quite a few others. Experiencing things very few others have and living through them all. If I had a list, the only thing on it would be to spend every waking second with Amy. Thus began my quest to let Amy know, at every moment, that just being with her was enough, for the rest of my life.

That night, a dinner at a fantastic Mexican restaurant, a couple of margaritas, and an outstanding concert topped off an emotional but great day. The next morning, we woke to yet another beautiful day with clear skies and brisk temperatures. It was my turn to take our dog, Rye, out for her morning walk. As we walked along the river, I looked up and watched two eagles soaring overhead, seemingly blessing our day and our trip.

Over the next few weeks, many discussions came about how we felt about our new lives. I spent two hours or more a day studying ALS and Amy spent just as much time planning for what was/is to come. Neither of these tasks is very fun, and the highlight of these early days was coming together on the couch, with a fire in the fireplace, meaningless shows on the TV, and just being close to each other. A statement Amy often made during these times was that she just couldn’t get to where I was mentally. All I could think to respond was, “let’s don’t waste today worrying about tomorrow”.

A quote from Ralph Waldo Emerson – “When it is dark enough, you can see the stars.”

I could see the stars but I needed to get Amy a telescope. The hours of studying and planning needed to come to an end. We’d learned what we could, though we never stop learning, and planned as much as we could, though plans are always changing. It was time to start living for today.

Prayer has always been a part of my life but praying for myself is something I find difficult, selfish. With my new normal, I felt the need to change that. I came up with a twice a day prayer list, still always putting others first, but now here is what I still pray, twice daily for Amy and I:

Dear Heavenly Father, I kneel before you as your humble and broken servant.

I ask that you give me 20 more healthy years on this earth. Time I will use to become a better Christian, better child of God, better member of my church, better husband, better friend, better son, better teacher, better student, better leader, better follower, better at anything you call me to do.

Dear Jesus,

Please help me to answer the calls that come from our Father, willingly, as you would answer them, with your strength, your knowledge, your courage, and your confidence, as well as your love, your kindness, your patience. And, Lord Jesus, please continue to reach down and touch me and heal me so that I may have that extra time on this earth to do your good work.

Holy Spirit,

Thank you so much for the seed of faith, hope and belief that you have planted within me. Please help me to continue to nourish that seed and let it grow. Harvesting its fruits and passing it on to others in your name and to your glory, and also, using it to heal me.

I pray this in the name of Jesus Christ, my savior,

Amen

I pray this prayer, morning and night, often on my knees in my War Room. (More about the “War Room” can be found on the “Who am I?” tab and will be the subject of a blog to come shortly.) You may not have faith. You may not pray. I do believe the reason I’m still here and able to write this is because through my prayers and petitions, I’ve been blessed with at least a little more time. I recommend giving it a try. What have you got to lose?

Here’s a song by Tracy Lawrence that tells the story of how I live now. Working hard everyday just to ensure that I have tomorrow… and praying harder that I am blessed with that day.

And finally, a verse about prayer and healing:

James 5:16: “Therefore, confess your sins to each other and pray for each other so that you may be healed. The prayer of a righteous person is powerful and effective.” 

Take care and God bless.

Coach