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, November 21, 2011

The Day my Boy Died. The Music Didn't Stop, The World Didn't Stop Moving. Our Hearts Skipped a Beat.

Having to do CPR on your own five year old son is unfair, but it has happened to me, and countless other parents, whom contend with epilepsy related conditions. I do not want your sorrow, rather what I desire a cure, so that no other parent, shall be placed into this situation that could only best be described as a parent's worst nightmare. It is true that my Tommy's heart stopped, yet cars continued to fly down the highway, as the ambulance we rode in, made its somber ride to an ending that was already written. Music continued to crank out of the angry commuter, going in the opposite direction, probably irritated that an ambulance was further delaying his trip home after a day of work. Tommy's wings were gained, and the pain of our family, friends, and so many who knew him brought so much anguish, crushing defeat, and an emptiness that no one should go through.

No parent should have to receive a death certificate of their child. I've got Tommy's in a closet in our house. Its not looked upon, because while I know he is gone, as the coffin closed on him and all of his happy smiles and laughter, his spirit lives on in all of our hearts. His younger brother, will know all about him, the picture of his hand print brings both tears and smiles. It is proof that he was and still is a part of our lives, and plenty of visits to his plot under a tree, remind us of his passing on that terrible night of November 2009. Sometimes it feels as if it was yesterday, but most often its as if, this was from another lifetime. There's before Tommy, with Tommy, and after Tommy, but yet his legacy carries on every single day. That twinkle in his eyes, and even though he never said a word, you could see the joy in his expression, that was nothing short of beaming when he was happy. His arms would flap up, which we called "doing the Tommy," and Porky certainly walked out strong, standing tall and walking unassisted.

What's the future going to bring? I don't know other than, it will be carrying on, and not giving up ever, for a cure for seizures. There have been so many children lost to seizures, so many grieving parents, or so many young adults who've never woken up, after experiencing a SUDEP event. As we close out Epilepsy Awareness Month, its important to learn new information everyday, whether we are a doctor, or someone who just wears a white coat with a stethoscope. Your position in life does not matter, nor does your ethnicity, your age, your religion, but rather your character. Each human being is to be valued, and you have each and every chance to make a difference in this combat, which is what we are engaged in. That's right, there is a war on seizures, as just like soldiers have to endure, there are casualties, whether it be milestones delayed, cognitive abilities impaired, or the worse of all death. We are all going to end up in a coffin one day, and that's okay, since the old joke of "don't be so serious, no one gets out alive" is so very true. The reason that some groups have you sit in a coffin, is for a good reason, and its not meant to be pleasant. Rather, its to say, "You have a limited amount of time, to accomplish your life's mission."

Sometimes its hard to figure out what that is, but listen to your heart, and consider times for reflection and prayer. You aren't going to get zapped by lightning to understand what this is, unless you are out on a boat in a lake during a thunderstorm, but rather the hints are subtle. The wind that blows over my son's grave, and jostles the glass decorations hanging off of the tree, is a signal of sorts. Its peaceful, and while many tears have been shed there, the sound is tranquil and is a reminder that there are no guarantees in life, except being able to be of significance to another human being. Tommy was able to do that, even limited by his Angelman Syndrome condition, and inspired a whole family, that didn't just have his last name. We each have unique God given talents, and we also have things that we might not be able to do. That's okay, someone else can help you with "the slack." That's why we are connected in so many ways, and now with the advances in social media, technology, and medicine, now is the time for a cure for Epilepsy. I was stunned to learn the other day, that less than 1/2 of 1% of U.S. government medical research, goes to this condition, which affects one in ten of us in our lifetimes.

It is time for that to change. You got it, the time for the music of epilepsy being relegated as a second class concern, is no longer going to be that anymore. It is going to require pain, even more than all of us who have epilepsy, or have buried a child or loved one to it, have already experienced. Get ready to make a stand, because silence or waiting for a handout, is a defeatist strategy that has never won any front. Whether it be the Civil Rights movement of the 1960's, or the overthrowing of dictators who treat their fellow countrymen as nothing but pawn pieces, this is the time for all of us to move into the checkmate position. You can be an element of change, a harbinger of developments, step by step. Its not going to be one of us, but rather all, and with our connected approach and dispelling of ego's, we can get it done. For you Tommy, and all whom have gone to God far too soon, and to all whom experience seizures or love someone with them. We will succeed. The world is going to stop moving, for our strength in numbers, and the commitment of our hearts.

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