Interested in a cure for seizures? Here's where you can immediately help.

Feel free to share any of these posts. There are no copyrights on any of them, they are for anyone, anyplace, anytime for whatever reason. All of my love, from a man who just simply misses his son, and believes in the decency of people around the world,

**To reach the author of this blog Mike, the best email account is a silly one, but goes right to my phone. Technology is so cool. Its Thank you for reading this blog, and its been such a good project, in that it has helped others and me as well. May you all live life to the fullest, we have no idea when it shall be our last "dance."

With much love, I am proud of the Angelman Syndrome Foundation. If you can help them, and families with this condition, please consider donating to them at They are on Charity Navigator, and have done a phenomenal job over the years, on the awareness and research side.

Monday, October 31, 2011

Steve Jobs "Oh Wow, Oh Wow": God's Love and Our Mission in Life

There's no doubt, that Steve Jobs was an amazing man, who's influence is going to last a long time. That's right, you can call him the "Einstein of Technology," because while he didn't invent it, much like Big Al did with Physics, he improved it and brought it to the masses. While both were controversial figures in some regards, Jobs was able to turn Apple into a proven commodity, made computers user friendly, along with changing the music industry and how special needs children are able to communicate. Successful, there's no denying, and one could also say he was driven. The past week there have been a lot of accolades, rightfully deserved, but Steve Jobs despite being put on a pedestal of sorts, was a human being just like you and me. That's right, an imperfect soul, who with his intelligence and competitive streak, was able to be a name that all around the world know.

He's also an example of resilience. Fired from his own company, he certainly made a comeback with devices like the ipod, iphone, and ipad. His obituary was revealing for such a private man, because in his last moments of life, he looked at his family, and beyond them saying "Oh wow, oh wow." What does that mean? It can be left open for interpretation, some might say it was his brain's lack of oxygen or braincells firing down, but I believe in full conviction, that he saw "the other side." Its up for you to infer what this means, but plenty of hospice worker's can attest to this. Patients who are not drugged talking about events with relatives that no one until later knows about, or glimpses of Heaven, as outlined by an author whom wrote a beautiful and compelling book on this subject. She was a nurse in a hospice, and while I believe in a higher power whom loves us, its up to us to make that decision, and live accordingly.

I am, not as smart or ambitious as Steve Jobs. Nor do I have his business saavy, nor obviously his expense account, as I drink my "Generic brand coffee," or "Mystery Meat" from a box. Yet I am happy. Even with the loss of my boy almost two years ago, from an Angelman Syndrome related seizure, I am ultimately satisfied. Does this mean that I wear a "Joker" like expression, that Jack Nicholson had on his face years ago, in the original Batman? Nope, but it means being content that my boy is with a loving God, who has certainly challenged our family, but so many others as well. "Squeeze but doesn't choke." Find me one religious text, that says that life is going to be simple, or fair. There's plenty of time, feel free to go through the Bible, or any other book trying to find such information.

Life is a struggle. There are good days and bad, but it ultimately comes down to what do you want from this life? As we approach the two year anniversary of the night that my boy went to Heaven, a lot of people have said my actions are heroic. They are not. I am merely a simple man, a father who made a promise after meeting a special man after a rather angry prayer, who wants to find a cure for seizures. Other than that, a day of fishing, a good bike ride, or just enjoying a trip in the woods is all that really matters. The Vanderbilt Kennedy Center Angelman Seizure Research Project, and other epilepsy related foundations, are severely below the funding they need for a cure. That's the next logical step, because while efforts have made a dent in the pain of those whom are affected by them, whether its generalised epilepsy, Rett Syndrome, Mowat Wilson Syndrome, CDKL5, or Angelman Syndrome, seizures still affect so many people's lives. They sap their productivity, make their lives more difficult, impair cognitive abilities, cause ambulance and ICU visits that have parents right now sitting in a chair by their little girl or boy's bed, wondering, crying, questioning. These parents are stressed out beyond belief, not sleeping, having to contend with the struggles of life that are already challenging to anyone, and have what Harry Truman so eloquently described as "having a barn fall upon him," when being told about having to succeed FDR on his death.

Each of us has a limited amount of days. Its up to us, what do we want to do with them? Sometimes its good to just "kick back a bit," or recharge the batteries, before facing our next battle. I wish that I could say that seizures, were a one shot magical pill, and voila they just disappeared. There are millions of people around the world, that would be thrilled by such news, but we aren't there yet. However, I am convinced, that with more churches and other faith based institutions, folks who want to walk the line, and stand up proud, convinced that God's plan for them is to knock seizures out of the park, we can get this done. Before Tommy's passing, I had no idea that I could do guest sermons, or go to businesses, and approach them about how to get involved. Yet, with prayer and guidance, and making the right connections, a starting line has been established. I don't know how this is going to end, its not up to me, but what I can control is the resilience of "Brother Bill," who's valuable lesson on my greatest day of pain, is that very value that we each have in our hearts.

The human spirit is remarkable. We are kicked, broken, and beaten in so many ways. Yet we continue to stand up. I miss Tommy everyday, as other parents who've lost their children, feel the same way. It is unfair, there's no denying that, but its up to them to ultimately decide, A. Do I just be miserable and live out the rest of my days, or B. Do I take the painful lesson that I've experienced, including placing the dirt on their child's grave, or spreading of their ashes, and get through, not over, and put on some boots and make something happen? Each person has this spark, this divine love that has the endurance to go the distance, just like how Albert Einstein and Steve Jobs had the brains and ambitions to be so prominent in our lives. True, we might not make the newspaper, become famous, or rich, but by God we can claw through the trenches, and come out champions, with the pain as the motivator to do the right thing. November 2009 is the month my Tommy passed away, "oh wow, oh wow." Its also the month of epilepsy awareness. Coincidence? Perhaps. Yet look at all of the connections in your life, and at the sky on a clear night, and rarely is anything due to mere chance. Its up to each and every single one of us, right here and right now.

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