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7 Years of The New Normal

Next month will be the seventh year since the devastating news of ALS first entered my life. How could this be? My children were one, three, eleven and thirteen at the time. Now I have a third and fifth grader, and just sent my second son off to college to join his older brother. Statistically, I was not supposed to be here to see any of these things happen in my New Normal.
 I can’t summarize seven years in one blog, but I can tell you it has been one hell of a roller coaster ride. I was inspired to write this blog because of my neighbors behind us. They are a wonderful family with two great kids – a three-year-old boy and a one-year-old girl. I often sit on my patio and watch them play. Then it hit me; what I was looking at was my family seven years ago. Healthy parents and kids. Then a cramp and a terminal diagnosis. It brought home again how quickly life can turn from normal to a new normal. You never think something like that will happen to you; then it does. Ninety percent of ALS victims are chosen at random. It’s one of the worst lotteries to be involved in.
 So, how do I cope? That is probably one of the most common questions I get. How’s it going? How can I help? The best answer I give is that I live in the moment. A good example was this summer. I was lucky enough to see Zac Brown Band in the front row. People spent more time on their phones, taking pictures and videos, than just living in the moment and enjoying what was happening right in front of them. You also have to stay ahead of the disease. Part of living in the moment is taking care of some personal decisions. There are many depressing things I’m going through right now that need to be done. As depressing as it is, it will be all planned and decisions made. My advice to you is that you do these before you have to. I’m sure it’s a much easier process.
 Do you know how many minutes are in a year? 525,600. Think about how many moments happen in a day, a week, a year. Enough that I know every year beyond the 2-5 years I was given is probably more meaningful to me than most. And the best moments seem to revolve around a common theme. That theme is love! The love of family, friends, and even strangers make the best moments. It makes me think of a song called Seasons of Love from the Broadway play Rent.
 So, lots of ups and downs, laughter, and tears. I feel like I’m living in an overtime that I hope extends another seven years and beyond. You never know, the tsunami that hit the past month that has soaked the nation in ice water could result in a gift that could rid our world of ALS and cure those who are battling it every day. In the meantime, I’ll keep enjoying the moments in every day.

4 responses to “7 Years of The New Normal

  1. Alice Wolfe ⋅

    Awesome summary of your experience with plenty of good advice for all of us to use in our own lives every single day! Jim, you’re an inspiration to me, your friends, your family and many, many people who you’ll never see or meet … how blessed are all of us to you have in our lives?! Keep up the good works … God bless you and the family as you continue to work your way down this very difficult road!! Hugs … Alice

  2. christy robinson ⋅

    always inspirational and encouraging to read your blog. Here’s to many more!!

  3. angela ⋅

    Words cannot even describe the feelings that I have reading your blog. I remember the very moment you called me on our hotel phone @ the Renaissance Hotel Chicago when we were @ a POA meeting to tell me you had ALS. That seems like yesterday. Or meeting you @ the Rockit Bar & Grill when you took the Amtrak from Milwaukee to Chicago. Your positivity and inspiration inspire me every single day. Although child care is preventing me from making the trip to see you tomorrow, I promise to be there very soon. Until then, keep fighting my dear friend. Big HUGS

  4. Amazing post, please continue to share, my husband was the 7th member of his family to be diagnosed and lose his battle with ALS, it truly is all about each moment of every day and not taking anything for granted!

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