Fighting ALS, Fueled by Faith

About three years ago my wife and I came to The Big Apple (New York City) for business. We decided we really wanted to see Hamilton on Broadway during that trip. How cool, right? So I planned the trip and myopically focused solely on getting Hamilton tickets, coordinating dinner and all of those things. We went to see Hamilton and it was awesome. So very good! But at the end they do a fundraiser by asking patrons to put money into a bucket for a charity as they leave. They then mentioned they were competing in fundraising with “that other guy” and his show also on Broadway. Well, in my singular focus, I just then came to realize that Hugh Jackman was playing in Music Man at the same time a few streets over. My jaw dropped and I realized I had missed that opportunity completely. By that time the nights we would be in NYC were sold out and we were out of luck. I vowed to my wife that someday we would see Hugh perform live. Well, today we are in NYC to see Hugh in concert Saturday Evening. Most of the concert songs appear to be from one of my favorite movies, The Greatest Showman. Cannot wait.

We are also going to see Aladdin on Broadway tonight. It seems fitting as a segue because after New York City we are flying to Fort Lauderdale to meet our kids for a 5 day Disney Cruise! We are so very excited for this as well. If you were to ask my kids what their favorite family vacation we have taken is, a Disney Cruise would be at or near the top of the list. For me, being with them all IS the top of the list. This will certainly resonate with the parents of “out of the house” children.

I am on day 13 of my new medication. I take it for 14 days (one more day) and then am off of it for 14 days. It’s an unusual regime but I seem to be tolerating it reasonably well. We are making adjustments to supplements and learning more and more about how to fight ALS, which is very challenging.

The thing that is occupying my thoughts is making the most out of every day. Sounds cliche. It is, until you really embrace what’s going on. Last week was a tough week for our country. The tragic loss we witnessed in full display of martyrdom was disturbing. I’m not the person to pontificate on this but what it reminded me is that we aren’t the author of our story. We have a role to play, and that is really important. We have a false sense that we are somehow in control. God is the author of all of our stories and we are called to make the most of every situation. Being present, loving others, calling evil what it is, and unapologetically pointing people towards Jesus.

I wanted to also thank many of you for the amazing response we have received for the ALS walk. We have increased our goal at least twice due to your generosity and participation. We are off to make memories and live out the full life that Jesus offers today! Hope to see you all along the way!