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.

Tuesday, January 29, 2013

Coming Full Circle at the Udvar Hazy Center

One of my favorite places to visit, in the DC area is the Udvar Hazy Center, which is part of the Smithsonian. I don't know how many times I've been over here, but as an "aviation/space geek," I learn something new on each occasion. Yesterday I spent the time with my three year old son, and in many ways it was, an emotional and spiritual experience. Years ago I took his brother Tommy here, with our family, and on another trip purchased him a spinning globe device that lit up. We walked around yesterday, and while my son was more interested in the elevators and automatic hand dryers, he did love seeing the space shuttle Discovery. If there's a fan circulating, for each time he's had us watch space shuttle launches on you tube, its going at a constant velocity.

I had a profound sensory reaction seeing Discovery, for the first time in person. Yes seeing it on the television, or on top of the Boeing 747 making the rounds, at retirement meant a lot. Yet just standing there, gazing at the shuttle that was "first to flight" after two tragedies, was very inspiring. I thought about the brave men and women, who strapped into this gigantic machine, and launched off into space after witnessing what could only be horror with the Challenger and Columbia. Yet take off they did, and not even gravity could hold them back, as they reached for an orbit some two hundred miles up. They not only defied what could only be described as frightening, but succeeded on every level, and also showed people around the world that never giving up is so imperative to success. That doesn't mean financial or any other number, but rather the fact that you are living a life of purpose.

There was a very emotional reaction yesterday. The same lit up spinning globe, was one of Tommy's favorite toys. His younger brother picked it up, and said "I want this Daddy!." How could I resist? There was no way, and he's already found a way to pretty much destroy it, which is impressive considering Tommy took much better care of his. That one lasted quite awhile. I cried tears, walking by it at first, as I did the stuffed teddy bear, with the astronaut suit on. That was a gift to Tommy, who actually did destroy the "astro bear's" mask. Apparently his teeth were good enough, to get through that durable plastic, and he loved that as well.

I am a happy person this morning, as this is typed. There is much to be grateful for, even with the angst that yesterday's visit brought up. Its a case of mixed emotions, but I'm glad that my boy and I went yesterday, even though it did bring up some painful reminders. Yet at the same time, these toys brought a slight smile too, as I thought "well, at least I did something right for Tommy," by getting him something that he truly enjoyed. His life was cut short at age five, but at least for a moment, he had his fun in the sun. How he loved to make that globe with lights spin, or to have that astro bear in his mouth, now has me sitting here laughing. I miss him so very much, and if God is so kind, I will live a life of purpose and length, along with being reunited with him one day. We have so much to go over, and I hope that we can spin one of these globes together.

Monday, January 21, 2013

Heart Shaped Box That Cannot be Opened

There is not much in life that I'm afraid of. That's because each day is an adventure, and while we have some control, there's much that is out of our hands. As the seasons pass, I am appreciative for lessons learned, even those that have brought so much pain. Embrace everyday as if it truly is your last, because one day you are going to be, "toe tagged," lying on a gurney somewhere. That's not meant to shock, but rather that is just the reality of life. We don't know how many days we have on this earth, and perhaps that is a good thing, so that we can move along with each sunrise and sunset.

I miss my son Tommy's blue eyes. We shared similar speckles in our eyes, and I try not to think too much, about how our blues were interspersed with dashes of yellow. That terrible night of November 2009 has been relived so many times, as I've looked at it from so many angles, but have yet to determine all of the answers that are sought after. God knows, and when that time is here, I will be ready. Yet until then, I cannot open, what I call his "Heart Shaped Box." Its not shaped like a heart, and it doesn't have this name, because of a Nirvana CD or a book that was famous. Rather, its because it tears apart my soul, to even think about looking at it. The box was given to us by Fairfax Hospital, where Tommy was pronounced dead, and has locks of his hair and footprints in it. I cannot open it, and rarely can I look at his pictures, because they simply cause too much pain.

The pictures are a safer choice though, and sometimes I look at them, picturing what he would look like right now. My thoughts go to his younger brother, and how they would interact. I think of my wife, brother, grandparents, cousins, and friends. Yet I cannot open that box, because in doing so, it would bring back so many raw emotions of Tommy's last night on Earth. It is tucked away in a closet, far out of reach, and I am thankful for that. One day I might be ready, but I am not now, and may never be. Am I grateful that the hospital staff, showed this compassion on that night? Yes. Their intentions were of kindness, and I will be forever indebted to a social worker, who can best be described as an angel.

Most of us in life have "that box." The one that is best left closed, that has such pain its best to just leave it as is, not looking back in the rear view mirror. Our struggles so closely mirror one another's, and that is why we must be there for each other, regardless of what our position in life is. Some days we are the windshield, or the bug, per that Mary Chapin Carpenter song. Yet, even with tears, crushing pain, and a torrent of emotions, whatever is in "our box," we must move forward. Each day is a blessing, and while the pain is sometimes bubbling at the surface, I am a happy man in so many regards.

Saturday, January 19, 2013

The Hospitalizations of Angels

Hospitals are staffed by loving nurses, and quite often compassionate doctors. These folks work tooth and nail, to do all they can, to help their fellow human beings out. One place this is almost always evident, is in the Pediatrics wing. I honestly do not know, how people who work in these areas can do what they do, but they are not only strong in character, but have mental fortitude beyond comprehension. Twelve to sixteen hour days are not uncommon for them, and they are often hampered by administrators, who work them to the nth degree. Yet they carry on, like good soldiers, making sure that children and their parents are doing, the best that they can.

Right now there is a young man with Angelman Syndrome in a hospital. May our hearts, and our prayers be with him, along with his Mom who has shown us all the definition of courage. All of us hurt seeing him attached to so many medical devices, and hope that he recovers as soon as possible. Yet it also pains us, to see him and other angels, who no doubt today are in hospitals around the world. Children and adults with AS show a lot of strength, but every single flu or sickness, can severely compromise their immune system. They are champions of life, there is no denying that, but it would be great to see angels live without this, along with seizures and other maladies that are considered part of this condition.

Seeing an angel running in a classroom, or playing in the water, is what makes all of us happy. While we all hope for a cure for AS, I cannot stop smiling, when I see an angel with that cherubic grin. Even on my worst of days, that smile means more than words could ever express. In a perfect world, Angelman parents would all live next to each other, but due to its rarity and so many other factors, that's impossible. Today I hope that each of us pray for a young man out west, and all of the angels who are under hospital care. They need to be playing in pools, putting God knows what in the toaster oven, and just living their lives to the fullest. An angel laugh and smile is the purest thing. Lord, please be there for all angels, and hear parents around the world.

Thursday, January 10, 2013

Seizures Plus Mobility, Special Needs Children are Strong

A friend of mine the other day said, "You are amazing. To come back from another knee surgery, and run again is just inspiring." No its not. Yes, it feels good, and today it was a pleasure to bike around the area in which I reside. I don't deny the joy of that, because the past ninety days have been frustrating. Like most folks, I don't like to "rest on my laurels." A day without some sort of physical fitness is a wasted one. Yet what about kids and adults with special needs? They are my heroes, and they are the ones who are inspiring.

I was thinking about this today during my bike ride. There were a lot of reflections, including thinking about how children with cognitive disabilities, are true champions. So many of them have low muscle tone, and when they have seizures, they lose all of the abilities they had mentally and physically. Yet they don't give up. The past Christmas season has been a bit painful, as every one is without Tommy. I usually mourn in private, but it does hurt, not to have him playing with the wrapping paper on gifts. Even with some tears today, I smiled though in one regard. That was his ability of resilience, that so many other kids with Angelman Syndrome, and other special needs have. I didn't realize this at the time, but it has become very much in my thinking.

Did I lose some muscle strength in ninety days? Yes. No doubt about it,there was a slight bit of atrophy. Yet that is nothing, its minuscule, compared to what a boy or girl with special needs has to deal with. After they have multiple seizures, they often lose their ability to walk, or participate in other tasks. Yet watching other children with Angelman Syndrome, along with other intellectual disabilities, has made me keenly thankful for what they accomplish. Often they can go ninety days or more of not walking, after having loads of seizures, or medical issues at hospitals. They still keep going, and along with the love of their parents, grandparents, and angelic friends step up to do it all over again.

These are our heroes. They are the ones who are inspiring, and who don't give up, even when the odds are stacked against them in almost every aspect. If you get a chance, to spend time with a child who has special needs, by all means do it. You will learn more from them, than from anyone else. There is a young lady, and due to privacy and other concerns, I cannot say much other than I'm proud of her. She has a severe disability, seizures, and she was walking the other day after a couple of weeks of seizures. I'm smiling now thinking about her, as she went down the hallway. Yes, her walking gait wouldn't win any awards for its beauty, but it was the courage in her eyes, and the strength of her heart that certainly was.

Sunday, January 6, 2013

Bubbles to Heaven: Its So Close and Yet So Far

Looking at my three year old blowing bubbles, as they descend to the sky, I look upon the clouds and wonder how high Heaven is. Or what realm of spirituality it is in, because there's just so much that we don't know, in our travels on Earth. Perhaps that is the way it is meant to be, because if we had all of the answers, what fun would that be? Today was the first time I've been able to kick up my legs to run, and to go biking today. It felt good, despite the winter blues that have been, in my heart a lot quite recently. I am still a happy man, and hope to live a long life, full of purpose and with family and friends whom I adore so much. Yet with each sun rise and sunset, I'm often wondering what my purpose in life is.

Each of us have probably felt this way, at one point or another in our lives. Sometimes its frustrating, because it seems as if there's not enough time, in any given day. We move through this life so quickly, that it feels as if we lose our connections, as soon as they are established. The ebbing flow of time grows so quickly, that you never realize that you lost that moment, of when you had clear thinking, or a grand idea that might be able to change society for the better. Life is mysterious, and while it is worth every moment, even those saturated with pain, I still have to ask what there is to be done. For some reason I like the title of the book "Purpose Driven Life," as that is what I and everyone else should be doing.

The winter winds are moving in, and the fire place crackles. This warmth is fine, and provides a comfortable environment, of which to write or read books. Yet is there more that can be done, with regards to seizure research, or to reach out to other parents who have lost a child? I don't know, as this seems to be a sort of "intermission." Maybe its a time to reflect, to look back at painful and happy moments alike, and decipher what they mean. I hope that some serious breakthroughs in seizure research can be accomplished in 2013, because sixty five million fellow human beings, need that cure and they need it now. With the sun going down over the horizon, may tomorrow be a day, that delivers that promise.