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, May 21, 2013

Obituaries Don't Get it Right with "Was"

I had some down time at work the other day, and was reading the obituary section. That tells you all you need to know, as there was no activity, and to put it mildly, "Boredom" was the word of the day. Dr. Joyce Brother's obituary was the featured one, and while she did live an impressive life with a lot of accomplishments, I don't like the word "was." I'm sure her relatives and loved ones don't feel this way, although I don't know for sure, because whether you live to her ripe age or less, "was" doesn't seem to be the proper way to describe one's death. Yes its permanent of course, and people can argue all day about life after it, but I do firmly believe in my heart that our soul's leave our bodies into the Heavens. There is renewed interest in this area through some religious scholars, and also through the medical profession. Yet the word "was" isn't really true about our children when they go home, and we don't.

Death is not a comfortable subject for most. We try to avoid discussing it, or looking the other way as a funeral home, is on the side of the road. I plan on living until 100 years if God is so willing, just so I can finally accomplish something, that won't be mentioned here but its quite hilarious. Yes my own son passed away four years ago, and Tommy is thought about and missed each and every day. Even through the tears, and the occasional smile, he is still very much a part of our family's life and always will be. That's correct, "IS!" His younger brother is learning about him at an age appropriate pace, and other parents who've been met, also feel the same way about the "was" and "is" wording too. Some might say, that semantics are a bit anal retentive, and in most cases I'd have to nod my head. However, with death, even though its permanent, our children are still very much a part of who we are, that are part of this club that's not wanted but very much the reality.

You can run all day, lift weights, drink vitamins, but you are not avoiding that final curtain call. When its your time, I hope that you have lived a life of purpose, and one where you can say "job well done." That's my goal, because even though we each must face challenges and tragedies beyond our worst of nightmares, it is imperative to stand up, dust yourself on, and continue to keep your child's memory in your heart. If I was struck by a vehicle tomorrow, or manage to land on a bicycle with no seat from a tall building, I want my wife and son, and immediate family to remember "is." The obituaries have it wrong, because while our loved ones have left us, they are very much a part of our daily lives. "Is not was."

Thursday, May 16, 2013

An Ode to Matthew

Facebook and the social media world, have been a double edged sword in many regards, but I happened to find a picture on a friend's wall that says it all. I am thankful that she posted this picture, and if the family objects to it, I will honor their request to take this down. Since I don't know them, nor can I find them, it is with an honest heart to describe their son's gravestone. The picture says it all, but I was especially touched by it, having lost a son who often was in a wheel chair. My boy learned to walk the last week of his life at age five, and our entire family will never forget his accomplishment. That's right, he walked out of this Earth strong, and I have no doubt that he was ushered into Heaven immediately. I know that he's not in pain, that he is able to do so much of what he was determined to do on Earth with ease, and is in the loving embrace of God.

Matthew's obituary here, is something that all people should read. It is inspiring. Also it is a reminder, that each and every human being on this earth, has a purpose and must give their best, whatever their ability may be. I pray that his parents have been able to carry on, because while I'm sure they miss him with every ounce of their hearts, they also are aware that there's a place where there boy is truly free. Funeral memorials are often viewed as reminders, but often they fail to convey a powerful message, other than marking a date with a name. Matthew's is far from that, and in fact says "Trusting in God, is what will set you free." Reading his life story was amazing, and his parents faith, and his perseverance are to be commended.

If I'm out where this is, I plan on stopping by, and paying my respects. This is a worthy testament, of showing not only what Matthew did on Earth, but where he is now. He is doing everything to his heart's content, and I have been looking at this a lot today. I  hope others shall too, and by all means, read his life story. It ended at a young age, but the impact he left on Earth, still moves people across the U.S. and around the world. Thank you to a friend who posted this, and also this is proof that our globe is becoming smaller, with our hearts growing larger for what really does matter.

Why I Support the Angelman Syndrome Foundation

Its been almost four years, since our son Tommy passed away. Our family still sheds plenty of tears, and we will never get over this, ever. Yet none of us wants people to feel sorry for us, and there are plenty of other "Angels" who've gone to God far too soon. I am proud of all organizations that are working for new developments, and ultimately a cure for Angelman Syndrome, which is caused by a deletion of Chromosome 15. It is named after Dr. Harry Angelman, who was able to discover what this condition was, which ultimately led to blood tests and clinical diagnoses for so many children, and even adults who never had that. I am thankful that Dr. Angelman was so persistent, and listening to his interviews, I get chills down my spine, as I do believe he was a very compassionate man.

Our first walk for the Angelman Syndrome Foundation( was a painful one. While I was glad to learn we weren't alone, it led to a lot of tears, although we were able to see that intervention among younger angels greatly improved their chances of walking and being able to enjoy life more. Each one afterwards was full of joy, although the one after Tommy's passing, led to even more tears. These were both good and bad, as a hug from a young lady, made all of the difference in the world. As I type this, the chills have come back, because that was nothing short of a spiritual experience also. Her and her parents know who she is, and because this blog is public I can't post her name, but that hug still is felt even right at this moment.

The ASF is both the oldest and largest Angelman Syndrome group, and its resume is very impressive. First of all, they've delivered more grants towards research than anyone else, plus doctors and other medical professionals are more aware of AS due to their efforts. While there have been some difficulties, I must say that they do a fine job, considering they don't have the resources of larger and more established groups, such as the Susan G. Komen's or American Cancer Society's reach. Yet they are doing more with less, and their financial transparency, shows why they get such high scores on Charity Navigator. Their breathtaking research at UNC Chapel Hill, has been published in Nature Magazine, and could lead to not only a cure, but other treatments for those with conditions such as Alzheimer's. They should be applauded for this, and a lot of the blood, sweat, and tears provided by parents and those who love angels, is exactly why the ASF has been so effective. Their executive board and staff work sixteen hour days quite frequently, and have been known to take calls late into the night.

I wish I could attend the ASF walk this year. They are being held all over the country, but due to a recent vacation, its impossible to get the day off. Next year for sure, but I will be praying and walking in spirit, with those whom are at all of the locations across the country this weekend. If you can, I hope that you will consider making a donation to the Angelman Syndrome Foundation. Each one is tax deductible, but what really matters, is you are giving so many parents hope, even those of us who have sadly lost one of our angels to seizures, accidents, or other related medical events. I miss you Tommy, each and every day. Yet I know you are walking in Heaven, with a whole bunch of other angels, and probably laughing and smiling it up with all of them.

Saturday, May 11, 2013

There are No Guarantees: A Scare Jostles Our Family

This past week has not been easy, although the storm clouds are starting to dissipate. After a fun trip to Mexico, that provided a lot of much needed battery charging, we returned to place that we never wanted to go again. That would be the Access Emergency Room, where Tommy had his first seizures, and was eventually sent to Fairfax Hospital via an ambulance. They couldn't stop them, and these memories came crashing back, as our three year old had to go there. He was in booth #6, right next to the #5 one, where Tommy's seizures were out of control. All night our boy was coughing, and he starting to throw up and cry. It was a cry that he's never made before, and after realizing he was having respiratory problems, we got him in there quickly.

Both my wife and I, first wanted to make sure he was okay, but we did not fail to notice that we were right where Tommy was. He passed through our thoughts a million times in that hour, before we were just like Tommy, sent via ambulance to Fairfax Hospital. After a day there, our son was released, but I have to admit that this has shaken us up a bit. While our boy is doing better now due to a host of inhaler treatments along with a plethora of antibiotics, his breathing was terrible. Even his lips turned blue while we were at the hospital, and while we were assured this was temporary, it wasn't very reassuring.

We are both relieved beyond belief, that even though he will be taking respiratory treatments for the next couple of weeks, he should be back to normal in no time. Yet at the same time, we were reminded of Tommy in many ways, and it was painful. Both of us had tears in our eyes, and its such an ironic situation. While we hope for no more "adventures," we are not sure what the future holds, but our boy is getting even more hugs than usual. Parents are used to emergency room visits to a degree, and even hospitalizations, but it is my sincerest hope and prayer that he never gets this sick again. Can I do anything about it, other than simple precautions? Nope, and that is what scares the living daylights out of me, even though so much is out of our control. Until then, its continued monitoring, and hoping this infection gets kicked to the curb.

It Does Not Matter What Your IQ Score Is, What Matters is the Size of Your Heart

Recently a kind lady experienced the pain, that no parent should ever go through. That's right, a parent's worst nightmare, losing their child. Having been down this dark alley, I know what she talks about, with regards to people not looking you in the eye, or trying to avoid you altogether. What are the reasons for this? I don't know honestly, and I don't think its because people are lacking in empathy, but simply its beyond the comprehension of most. Death is an uncomfortable subject, and when it involves someone's son or daughter, then it becomes an even trickier avenue to navigate. Many of the people who do avoid, or stay far away, are of high intelligence. They are not bad people at all, and each parent that has lost a child, is going to react differently of course, as all people are unique, and shaped by experiences. Yet, there are moments of beauty even amid tragedy, and a young man with a low IQ due to a traumatic brain injury, got what so many others have not. That is love in its simplest form, and this is more important, than any value that all of us can express.

This woman is in the throes of grief, which often lead to a variety of emotions, whether they are anger, sadness, guilt, and with time I pray acceptance. There's no time frame for this, but Dr. Elizabeth Kubler Ross was correct with the "five stages." If you aren't familiar with her readings, by all means, open either "Death and Dying," or "Love and Light Tunnels." A simple gesture touched this broken heart, and we should all be grateful that this young man, came up to her and stated "I'm sorry to hear about your daughter's passing." Those words mean a lot to a devastated parent, and also transcend to others who have suffered such a loss. His heart spoke these words, and the love that he showed with this, is what all of us should be doing when tragedy strikes.

If you know a parent who's lost a child, by all means comfort them. It doesn't mean you have to move mountains.  A simple hug, a message of condolence, or a warm meal can help provide sustenance, in these times that are so challenging.  By all means the loss of a child, doesn't make a parent contagious, it just leaves them in a different state than they were prior. My prayers and I hope others will be too, that this warm lady is able to get through, although obviously never over the pain. Its almost four years since Tommy's passing, and I'll admit that I still have bouts of tears, or moments of anger, along with requiring solitude at points to get my mind in the right place. Yet I like it when people ask about Tommy, and I hope that others will help this kindred spirit in similar regards. Our children are still with us, as while they may be in Heaven, they are in our hearts until its our time to go.

I know death is something that most, want to pretend doesn't exist, but it can strike at any time. It can happen to someone in the best of health or worst, without any rhyme or reason. We are all going to depart this earth one day, and its up to the good Lord to decide, whether we like it or not. Big hugs to this young man, who stepped up and delivered a grand slam of love, in the midst of such pain. He not only showed us the right path, but provided comfort, to a mother who is facing a new reality. Right now I am sure her world is upside down, but for a few moments, that axis was in the correct position. Thanks to this good man, who has faced a difficult road of his own, because while he may not be as smart as some, he showed a level of love and sophistication that no IQ points can ever touch.