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.

Wednesday, June 6, 2012

An Ode to the Space Shuttle Program and Tommy

Life works in strange circles sometimes. As a young boy, I watched with huge eyes, as the Space Shuttle Enterprise flew over my house in the D.C. area, on top of a Boeing 747. I remember this as if it was yesterday, as "time marches on." My mother was out in our front yard with me, and told me to "pay attention to the spacecraft, not the airplane." As that space shuttle on top of that big ol' jet airliner swept to the West, I never imagined that I would see it sitting, at a display at the Udvar Hazy Center Smithsonian Building next to Dulles Airport. Yet years later I was, and a few months ago, I watched as a Boeing 747, transported the Discovery in similar fashion around the area. Passing over landmarks at low altitude, I looked back upon life, and felt both pride along with a mixture of sadness.

I was always so fascinated with space flight. That has not gone away, even though I do not have that blonde hair, or the amount of energy that a seven year old had when reading Sally Ride's book about flying in the shuttle. Her book was one of my favorites, and along the way I've loved "Rocket Man" by Astronaut Mike Mullane, and of course "The Right Stuff," by Thomas Wolfe. Each and every launch I have watched, as my youngest son has made me sit with him for hours. While he is only two, and thinks Peep his stuffed animal penguin is flying it, I do hope that there will be a new space shuttle for him to watch.

As all of us know, NASA had two terrible tragedies. Space flight is inherently dangerous, and the brave souls of Challenger and Columbia, died doing what they loved so much. They are no doubt mourned by their family, friends, and countless people around the world. The Gemini I mission also suffered the loss of three brave souls, and yet the folks at Cape Canaveral never gave up. Reading books about Apollo 13, and watching the movie, are proof that human beings have courage, and are willing to expand upon what seemed to be previously impossible. I plan on seeing the Discovery Orbiter next week, and I'm sure its going to be a special moment. That after all, was the first back in space twice after the Challenger and Columbia tragedies, and the brave men and women who flew in these machines should be proud, as should all whom were part of this effort.

The future of the Space Shuttle is in doubt, even with Space X and the potential Orion/Constellation Project. Yet what is not in doubt, is that a simple man who's blonde locks of hair are gone, still has dreams. There are countless other parent's, who probably fell in love with this program, who never thought that they would witness the ending of space exploration as we know it, nor the loss of a child. I do not want your sympathy, but rather I want you to focus on what is possible through not only the folks whom landed on the Moon, but whom were able to accomplish what was laughed at years previously.

When Tommy passed away in 2009, a dream was crushed forever. Its so hard to hear that your child has Angelman Syndrome, a rare condition caused by a partial deletion of Chromosome 15. Yet Tommy fought on, and walked tall in his five years upon this Earth. Much like the pioneers of the space program, he had resilience and tenacity, that I'll never have nor understand. I miss him every single day. Those beautiful blue eyes, that blonde hair, and those chubby cheeks were gone the moment I had to lower him into that grave six feet deep. For all the sounds of his life, the quietest of all was his casket closing.

It is now up to us, to make sure that people with Angelman Syndrome, and other conditions that have epilepsy as a component, do not go to the Heavens far too early. Much like the space shuttle he soared in life, and I have no doubt in my heart, that he is soaring with our loving Father whom challenges us, but is always in our corner, even in the darkest of days. Our generation is ultimately responsible for not only finding cures, but also making sure that no other parent, has to go through what can not be accurately described a nightmare, but rather a painful death that stays with you forever. Each and every one of us has a moral obligation, just like those astronauts who strapped into a machine with hundreds of thousands of moving parts, to do our part and make seizures a chapter in the history book along with these stellar machines.


  1. well said Mike.
    I admire you for your courage to share your story.

  2. mike, that is an incredible story and so well written. as an aunt with a child of AS, i hear my sister's struggles and success each and every day. it is not easy being a parent of a child with AS let alone those whose children have seizures and a long list of other aliments that go along with AS. As research is being done and families are part of clinical trials, I hope, we all hope (as you said) "to do our part to make seizures (and AS) a chapter in the history book..."

  3. Thank you Jaime, and let's run forward. Forward all the way :)

  4. Jocelyn,

    May that indeed be the case. Keep being that loving aunt, because what Dr. Weeber said the other day was very profound, very touching, and may that day just happen, and very soon indeed.