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Learning to Live in the Moment When You Have a Progressive Disease

I have a very eclectic taste in music. If you can think of the time period, or a genre, I can probably find the song or an artist I enjoy. Out of all the music though, my favorite is music is from the ’50s, ’60s, and ’70s. There’s just something about this music that speaks to my soul. I love it. I have a huge record collection, and my iTunes music library has over 5,000 songs in it. But there is no singer I love more than Frankie Valli and the Four Seasons.

The very first record I ever bought was a Four Seasons record (“Walk Like a Man” and “Candy Girl”). I love everything about them — the vocals, the songs — and I have almost every record they ever made. This past year as a birthday present, my teachers gave me a gift certificate to the Nashville Symphony. Now my wife does not quite have the passion for music I have, and she is not always excited about the thought of a trip to the symphony. Don’t get me wrong, she would go if asked her to, but it would not be her first choice. So, after searching the performance choices, when I announced that Frankie Valli was coming to the symphony and I wanted to go, she casually suggested, “why not take your son, he would love it.”

You might think, what 15-year-old boy would enjoy a concert like this? Well, my son would. His music tastes are just as eclectic as mine. When I told him what we were doing, he was extremely excited.

About two weeks after my Parkinson’s diagnosis, we attended the concert. The two weeks between my diagnosis and the concert had already been filled with difficulties. I had started new medicines which were not working as well, I had passed out in a restaurant (always fun), had my first ambulance ride, and spent the night in the hospital. My Parkinson’s journey had started off with a bang.

Needless to say, I was battling discouragement and frustration. But tonight was a night that I could lay that all aside and just spend time with my son. As we sat at the concert, we both had a blast. My son may be the only 15-year-old that knows the words to almost every Four Seasons’ song. We sang along clapped, cheered and had an unbelievable time.

As I sat there watching him, tears filled my eyes a couple of times, as discouragement fought to take over. I wondered how many more of these memories I would have. How quickly would the disease take me? How many more times would I be able to do something like this with my children?

In that moment I was reminded that I had today. I had this moment, I had this memory — a wonderful memory with my son, sharing music we both loved. I had a memory and experience that could never be taken away. And in that moment, I was so thankful. I was thankful for the teachers who gave me this gift. I was thankful for Frankie Valli, still performing at 85 and being amazing — he can still hit those notes! I was thankful that my son and I could share this love for music.

At that moment, it didn’t really matter how many more memories I had, what mattered was this memory with my son — a memory he would never forget. Sometimes we can get lost in what we think might happen in the future, and we forget to cherish the moments that are happening today. Sometimes we can let the fear of what might happen rob us of today, and we forget to live in the moment.

Walking out of the concert, I was thankful for today, and I cherished the opportunity to make this memory with my son. Thank you teachers for this wonderful gift, and thank you Frankie Valli for sharing your gifts with us, and helping to create a wonderful memory with my son.

Will this disease progress? Most likely. Will this disease take things from me and my family? Most definitely. Can it take the experiences we are having right now? Never. Don’t miss out on today by worrying about the future. It will come whether we worry about it or not. Take time to live in the moment and make the most of the day you have been given. Today will never come again, so cherish every moment.

Getty image by BenchBo.