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.

Saturday, March 16, 2013

The Kids are Alright: The Younger Generation's Future is Bright

The goal of each generation, should be to be better, than the "old guard." This one has often been called "the facebook bunch" or other negative terms, that are far from the endearment that they rightfully deserve. We live in a skeptical society, whether that's human nature or a conflagration of our media and Internet based culture. Yet today I met a young man, who's another shining example, of how this up and coming group of young men and women, are going to be great for those with special needs. Yes we have seen this in classrooms, and parents of children who have serious medical conditions, have been so proud of young people, who show not only respect but love to angels on earth.

This young man's name won't be posted, but it was just music to my ears, hearing about what his plans are. He is seventeen years old, and getting ready to pick which college he wants to go to. Often he spends time with those who have special needs, and a lot of the kids he works with, are on the autism spectrum. He has decided to go  to college, and get a degree in Special Education. With this he will become a teacher, and he wants to incorporate some new ideas into the curriculum. One of these, is connecting further with those who have Asperger's, and trying to get people with this condition, to help him see the world through their eyes. Eventually his plan, is to have those with Aspergers teach at least parts of classes, and show what it is like to contend with this on a daily basis.

I wish him well and Godspeed in this endeavor, because while he is very bright, what impresses me the most is his compassion. May this world, which so often breaks even the toughest of individuals, cave into him rather than the other way around. We are making strides with regards to those who contend with autism and related conditions every day, yet there is still much progress to be made. With this young man, and so many more like him, I have a feeling life is going to improve for so many people and their families. Let's hope and pray that he and these other beacons of light, are able to cross that finish line, so that all people regardless of any ability get equal footing at enjoying life at its fullest.

Thursday, March 14, 2013

Hope is Where the Heart Is

All of us at one point in our lives, have lost all faith in everything. Each and every one of us, that's on this planet, has baggage. I think I'm up to a complete Samsonite set by now, but what matters, is how you deal with it. Do you let it in a figurative sense, roll around on the turnstiles at the airport, or do you pick it up, and move forward with the lessons learned? All of us have made mistakes, all of us have sinned, all of us are imperfect beings, even with the kindest of intentions. It does not matter what country you live in, or any of the so called labels that all of us get caught in, because at the very bottom of our core, we all have souls that are often weighed down. Recently I read a book called "Changed by Faith," by Dr. Luis Palau, and I agree with him on his assertion that 80% of our problems, are due to unresolved guilt.

How do we deal with such an issue? By facing it head on. If I could count how many times I've been angry or sad, and there was a penny attached to each instance, I'd be a millionaire by now. For the the fleeting moments of happiness, joy, that are to be grasped on with full intensity, I'd have several hundred thousand dollars in my savings account. Life is not an easy ride. Its full of bumps, bruises, and pain so heavy upon the heart, that it does feel as if the world is walking on you. Actually, Hemingway's description of "the word breaking the most toughest of people," is accurate, because there will always be pain, tragedies, and events that make you not only question your sanity, but also "what is the meaning of life." The last one has caused me the most difficulty, and I think to be completely forthcoming, the biggest issue I face regularly is being too hard on myself. Is that a cop out? Nope. A lot of people I've met, in the throes of anguish, that is their dilemma. You aren't alone. Life is an adventure, and that is what we are put on this planet for, this blue marble that is covered with water and inhabited by idiots. Those are of course, someone else :).

You can think you've really "screwed up everything," but in all reality, someone else has "been there, done that." It took years for me to finally admit, and there have been tears associated with this, to realize that each of us has value, and also we are not always going to make the right decision. The learning curve can be harsh sometimes, but ultimately looking in the rear view mirror, I now am able to realize what went wrong, and make corrections on the trajectory of life. Am I now going to never make a mistake again? Never. Just kidding, of course I'm going to. All of us will, but that is where we learn what we are made of, what deep down that blood and guts that is coursing through our veins, can do not only for us but for the lives of others around us in the same heavy shoes.

So often we worry about being inadequate. It paralyzes us and we become complacent, not reaching out for that branch that brings stability, because of the "what ifs." There are no guarantees in life, other than we are born, we live, we die. Its pretty simple, and that is the beauty in a way, because while we don't know our day, those are etched in stone as mortal beings. A smile or laugh, by one of our fellow human beings, can make all of the difference in the world, and I bet you have made more of an impact on others, than you'll ever know. Some of the best things in life, result from quiet faith or what seems to be a coincidence. There's no such thing as that, because these are events, that are in fate meant to happen. Looking at the stars at night, I find it remarkable, that these lights from the cosmos are from years ago. Just reaching Earth now their brightness in the sky, is a reminder that each and every one of us, are a valued human being with unlimited possibilities for living a life of purpose and satisfaction, no matter what curve balls are thrown our way.

Thursday, March 7, 2013

Spending a Weekend with Two Rett Angels: Spiritually Touched

This past weekend I did not make it to church, but you do not have to go to a place of worship, to feel spiritually moved. The Good Lord is with us always, and over the last couple of days, I've been thinking about a trip to Baltimore, that I will no matter how valiantly, fail to put into its context with mere words. I had met a little girl with Rett Syndrome before, which is a  neuro developmental disorder that affects mostly girls. Estimates of occurrence are somewhere in the 1 in 10,000-15,000 range, but be assured that girls are born with this each and every day. According to, it is as prevalent as ALS, Cystic Fibrosis, and Huntington's Disease. There are several foundations, and scientists from international locales working on a cure.

My sister from another mother Lisa, has a daughter named Ashley. I had seen pictures of videos of her before, but never had the chance to meet this twenty four year old princess. The same goes for Ronna, a kind lady from fairly close by, who's daughter is named Amanda. She is twenty five, and both of them look like they are twelve, truly both are gorgeous. They are cherubic angels, and I am so grateful for the chance, to have spent time with these wonderful families, that are resilient in all aspects. As soon as I met these two young ladies, I was deeply moved. There were lots of tears and smiles, because looking into their eyes, you can see the power of love, innocence untouched by the sometimes conflicted environments we all live in, along with proof of a spiritual connection that all of us have. 

Both girls had their dolls with them, and I cannot even begin to fathom, what their mothers went through as they learned their beautiful girls had Rett Sydnrome. These girls and their families deserve a cure. Until then, they have earned our respect. Both were non-ambulatory, and have had to fight seizures and a whole host of health issues. They've both fought through numerous surgeries, including invasive ones, that left me in tears just thinking about what they involved. Yet they don't give up, and likewise their families don't either. Both Lisa and Ronna are fighters in every sense of the word, and my hat also goes off, to the siblings of these two beautiful young ladies. Grant and Rebekah, you have not only made your parents proud, but you also have made the world a better place. You have fought tooth and nail at every stage, along with continuing to educate the next generation, which is how a cure will be found. Sue, you are an angel too.

I cried upon leaving both of these girls. There is no shame, but rather a heavy heart, because just being close to them, meant so much. There were just so many lessons this past weekend, and while sadness was part of it, there was also joy, laughter, and much happiness to boot. If I had a glass of wine in my hand right now, I would toast these families, and both Amanda and Ashley. They are champions, they don't quit, and show us that life is to be valued. Looking into both of their eyes, or getting smacked on the head, was one of the best times ever. Thank you to both of these young ladies, and to their families for sharing them with me for a few moments, that have provided a lot of peace and more of an education that I had prior to this weekend.

Wednesday, March 6, 2013

We Walk in Circles: Another Angel Gains His Wings

We all are born, live, and die. That's the order of business, and while there are jokes about in between events, that's the bottom of line. Each and everyday is a blessing, to be cherished with appreciation, but far too often they are viewed as a menace. Yet they are far from that, because what is a menace are seizures. This past weekend, I was saddened to hear that yet another young man with Angelman Syndrome, passed on from seizures. There were a variety of emotions, ranging from anger to sadness, and all in the AS family are deeply affected by such tragedies. Kids with Angelman Syndrome are so cherubic, have so much heart, and truly are better than the rest of us. Their enthusiasm, their smiles, their laughs, and outlook on life are full of love that simply cannot be verbalized.

Right now, a family in a beautiful part of the United States, is facing gloomy clouds. All of our hearts and prayers should be with them, as they are going through the worst possible pain, that any parent should never have to contend with. It is the hardest possible road, full of rocks, that jut out when unexpected, even after the shock of losing a child. They are going to need our prayers, our support, our compassion. All of us have been looking at the pictures of this beautiful family, and have cried tears along side of them, no matter where on this planet we are at. This young man's smiles, and gusto for life, are dearly weighing heavily on this family, who so obviously loved him. He had a blessed life, and may the balloons around the world, be released this Saturday in memory of him.

All of us wish that we could "send the seizures away forever," and it is too late for this young man, along with so many other angels. There have been far too many taken by these, or had their lives affected by them. As a simple man, I do not know the reason why, but I do hope with everyone else that a cure can be found. I sit here this morning typing away, thinking of the beautiful spots of Hawaii that I've never had the chance to venture. The crashing of the waves on the beach, that gentle reminder that we are surrounded, by something so much bigger than each of us. That naturally musical from the soul  sound which has lullaby qualities, may it provide the family with some comfort, as well as them knowing they are not alone. They are far from that, because there are so many that have been through what they are going through right now, and each and every one of us that has not still has tears just as valuable, and just as noble during this time of pain.