I bring this up because I often wonder what my kids think about as we go down our journey. I really watch my ten year old son Evan and listen to what he says. Recently we were talking about cures for ALS. He is convinced they will find one soon and when they do all he wants to do is play catch with me. Although he did say I get 30 days to get in shape. Thanks son. Of course my heart sank as I know without a miracle that won’t happen. So I asked him what others things would he rather do and he said “nothing I just want to play catch with you”. So I decided to ask the older boys and they said the same darn thing. It made me realize that a bond between a father and a son can be as simple as playing catch. I also know that despite wanting to do this they will never feel cheated later in life. My experience gives me comfort because seeing that disappointment in his eyes is tough.So enjoy the simples pleasures with your kids. The trips and toys are great but if my childhood proves anything and my kids are any proof, a simple game of playing catch will impact them and create a lifelong bond.
Are you content with your life or are you still searching for something more? I ask this because people always ask me what I want to do next. When you are living on a timeline, which we all are by the way, it seems more important to never settle with where you are. I try… Read more.
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How can you really appreciate a battle without going to the front line? There often is a disconnect that occurs. This can often happen in corporations. As a field rep, we would often get our direction from corporate and oftentimes felt that they didn’t really understand our needs or issues. The good leaders would travel… Read more.
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It is very humbling when someone tells you that you inspire them. Through my public speaking engagements I’m often told how I inspire others to live a better,fuller, and more inspired life. That makes me feel empowered to continue my efforts to share my story with others. What they don’t know is that I am… Read more.
Yesterday marked the ninth anniversary of my father’s passing. While it is very difficult to lose a loved one, time as well as healing of the soul makes each year a little bit easier. I still find it hard to believe it has been nine years since I received the phone call from my brother-in-law… Read more.
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Every once in a while something occurs that makes you pause, reflect, and put things in perspective. One of these events happened while I was flying back home from North Carolina last week. As I was waiting at the gate I noticed four Marines walking up in formation. There were also two highly decorated… Read more.
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What is your favorite day of the week? During college my favorite day of the week was Thursday because it was the unofficial start of the weekend. Of course once you start working Friday seems to be everyone’s favorite day. Saturday and Sunday’s are a no brainer! Nobody likes Mondays and let’s be honest, Tuesdays… Read more.
This can be a simple question to some but a deep question to many others. As I said in my previous blog it starts and ends with Faith for me. Without faith how can you have hope, and without hope how can you live your life no matter what you are facing.
That kind of brings me to acceptance and denial. For a while I denied what I had and hoped it was something else. Eventually I had to accept this diagnosis to continue to live my life. Some may believe that if you accept something difficult you lose the ability to have hope. Nothing could be more false. I went from denial and hoping for a different diagnosis to acceptance and hope for a cure or a difference maker in the medical field. Little did I know something would happen this week? For the first time ever a doctor has discovered a cause for all forms of ALS. It is hard to fix something very complex when you don’t know how it broke. Now the hope has shifted again for the difference makers in the medical field to discover a medicine to attack the problem and slow down or hopefully find a cure for all those suffering with ALS.
As a parent I have many hopes for my kids but health and happiness are at the top of the list. I can’t imagine what it is like to hear that your child has a terminal illness no matter the age. My mom is 83 and I can see the worry in her eyes and feel the heartache she has for me. I also know this has added additional stress to her which isn’t healthy for anyone. This new news brought new hope to her that maybe something could be done to help her son.
I don’t know if they will discover anything soon enough to help me but I hope so. I don’t know what my children will grow up to be but I hope it makes them happy. I have many hopes but most of all I have faith. My hope is that all your hopes and dreams come true and no matter what you are facing. Never lose hope in what may seem impossible there are many difference makers in this world.
Have you ever thought about what your role is in life? Well I have lately mainly because I thought I knew it and then ALS came along and I lost my identity. My dad always said find something you’re good at and something you would do for free then make it a career and you will never have a “job” the rest of your life. Funny how I am giving these same lessons to my oldest boys now.
When I was young I wanted to be a professional bowler. It was something I was good at even winning a state championship at thirteen. That faded because I became a drummer and wanted to be the next Neil Peart of Rush. That dream never faded by the way, it just never came true. Eventually I graduated from college and found my way into sales. That is where I found my niche in life. Not just any sales but the pharmaceutical field where perhaps what I did could help someone else.
I will never forget the first time I met a patient who told me the medicine I represented changed their life. I felt like a true difference maker. What I loved about my job were the daily interactions I had with people. I love people and those interpersonal relationships were what I cared and enjoyed the most about my job. And because of that I made people smile, laugh, open up, and helped a lot of sick people feel better. I also made a good living and provided for my family.
I hoped to be a difference maker for my wife Susan but each day I become more dependent on her. That was not part of the plan and I struggle with this daily. I strive and hope to be difference makers in my children’s eyes through the examples I try to set on being a husband, father, and friend to them all. My struggle is finding that identity in an ALS world and that is a work in progress.
One thing I do enjoy is working with the ALS chapter in Milwaukee. Their work and dedication to this cause is inspiring. People like them are the difference makers who will eventually help lead us to a cure for this horrible disease. People who work with kids are huge difference makers. Teachers, church youth group leaders, coaches, they all make impressions on our children. One of the finest women I know runs a summer camp where my kids go. I have never seen more smiling happy faces on kids than the times I spent helping out at the camp witnessing the memories she creates for them. She is a difference maker. There are many examples I can think of but the point is there are many out there and all of us can be a difference maker in the world we live in.
If you have ALS like me you realize that life as you know it is gone and we are now living in the “new normal.” The part of my life I got the greatest enjoyment from, daily personal interactions, are now pretty much gone. As I struggle to discover my new identity, I know that just as in the past, being a difference maker will be an integral
part of the “new normal.”