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A Night to Remember

This may be the most difficult blog to write as it is challenging to put into words everything I feel about what occurred at the Evening of Hope this past Saturday. It is a great example of the whole risk versus reward debate. There is definitely a certain amount of risk not only for yourself but also your family when you open up your lives to others. Whereas my family is on this journey together we are also on different paths to get there. My story, although unique to myself, is probably very common to all families who have the unfortunate journey of ALS to deal with. That is why I had to tell my story.
I had worked on my speech for about two months; writing, rewriting, editing, and practicing to make sure I delivered what I hoped would be an emotional yet inspiring message. Although many people wanted me to share and practice my speech with them, I did not want to diffuse the impact that could be felt on that evening. I was asked repeatedly whether I was ready or nervous, and my response was always the same: I really wasn’t nervous which actually started to make me nervous. A few years ago I would be shaking as I stood in front of 20 to 30 of my peers for work yet I was about to deliver a 15 min. speech to about 750 people and I wasn’t nervous but rather I was calm and confident. I had prepared for this moment over and over and even though I struggled to make it through that  speech every time I practiced I had no doubt I could deliver it on this night. I was delivering that speech not only for my family but for all families where ALS has touched their lives. I asked the Lord to provide me strength and he delivered. I asked my father to be by my side and I felt his presence. With that and my family and my friends in the audience I knew I could not fail.
The rewards of that risk are too many to mention but I will give you a few. I shared hugs and tears with countless patients and/or families of ALS sufferers; this was the best reward. Although I saw tears in the eyes of my wife, my sons, my family, and many of my friends, I also saw smiles, laughter, and celebration on the dance floor by those same people. I was approached by a couple whom I had completed a landscape design for their property 17 years ago. Their lives had been touched by ALS and just happened to be there that evening. Somehow they remembered me and I felt so honored that they went out of their way to reconnect with me that night. I was able to meet family members of Rebecca Bell and Jeff Kaufmann as well as people from Jeff’s law firm. And in the end, I know we raised a lot of money for research to find a solution to this problem and that is the ultimate goal.
As I continue to reflect on that evening I’m very proud and happy with the end result. I need to thank all of the volunteers who gave their time and energy to make the Evening of Hope the success it was. But as I was reminded by Melanie, it is off to the next project.  The work will never be finished until we find that much needed cure so many people deserve. I’m still tired today but I’m just filling my tank with new energy to continue the fight and I hope you will be by my side all of the way. Together we can find that cure.

4 responses to “A Night to Remember

  1. ljpw93 ⋅

    I’m by your side all the way. I am so proud of you, you are an amazing human being and I believe that cure is just around the bend…..all my love!!!

  2. ljpw93 ⋅

    I am along side you all the way! You are an amazing human being and I am so proud of you Jimmy. The cure is just around the bend….believe it!!!!

  3. Tracy Growt Schrader ⋅

    By brother Jim via your brother John, shared the video and this link with the rest of our family. I’m so sorry you’re having to deal with ALS, but I’m simply amazed by your spirit, your faith and your determination. You’re an inspiration, Jim. And you still have beautiful eyes! Please know that you and your lovely family are in my thoughts and prayers – and that we’ll be making a donation to find a cure. Take care! Tracy Growt Schrader and family

  4. Tracy Derksen ⋅

    I heard your speech at the ALS Evening of Hope. Your speech was my life eight years ago. I lost my 36 year old husband to ALS 4/3/04. ALS is so devastating. You have a great spirit. Keep up the fight. And know that, you and your family are in my prayers.

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