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.

Friday, November 8, 2013

Much love to a Neighbor Next Door, May Faith be their Rock of Foundation

"Almost heaven, West Virginia 
Blue Ridge Mountains, Shenandoah River 
Life is old there, older than the trees 
Younger than the mountains, blowing like a breeze "
John Denver

Even people I know who loathe country music, universally admit to liking John Denver's classic. Some of them even like the more contemporary version, sang by Daryle Singletary, that is my personal favorite of "Country Roads" due to his powerful voice. I live one state over from the West Virginia line, although as most who read history books know, is that this was once all Virginia. No disrespect for VA, but I prefer the western part much better. This isn't to say that people in Northern Virginia or other parts are bad, but there's some wonderful about the Mountain State. "Wild and Wonderful" is the motto, and I've had the good fortune of spending many days there. Whether the southern part with the New River white water rafting, camping on the Shenandoah River, or in the more urbanized parts of Martinsburg, each trip has been a lot of fun.

You walk into a diner, and I guarantee you that a waitress will call you "hon." Respect for your fellow human beings reigns supreme in Buchanan and other parts of the state, where people still wave to you, and people will stop for a funeral procession. In all of my travels to WV, I've felt loved and cared for, and was heartbroken along with people around the world, of a young man with Angelman Syndrome passing away just a little while ago. He is in Heaven, without any hold up from St Peter, but rather a welcome sign with "Come on in hon."  The Father, the Son, and the Holy Ghost, the trinity are with this family now, and may He provide the foundation for them to carry on, to not get over but through, to persevere.

John Denver's song is a perfect description. West Virginia is "almost Heaven." Yet there is a place that there is no suffering, no pain, no heartbreak, just love from Jesus and God whom squeezes but does not choke.The state might be the most beautiful in the union, but its no where in comparison, to where our angels are. They are having quite a party up there, and while there is sadness on earth, may this family feel compassion, understanding, and we always have their back. The Blue Ridge Mountains, the powerful and long river of the Shenandoah, are nothing when compared to the beauty of God's love, and ours as well.

Sunday, July 21, 2013

Nine Years Ago This Evening, Tommy Was Born

I'm not alone as a father, who has been preceded by his child in death. Nope, there are many out there, and all people grieve differently, although the pain is the same. Nine years ago this evening, I was in the hospital with my wife, as she gave birth to our son Tommy. I'll never forget that night, as we were just so excited, about the little boy who was "on the way." He emerged crying, and I couldn't stop either, as he was just so beautiful. Both of us were thrilled to be parents, and the fact that it was a boy, my concerns of having to get another shotgun went clearly out the window. It was a thrilling night at Virginia Hospital Center in Arlington, Virginia, and my parents and mother-in-law, along with my brother were with us to welcome Tommy to this world.

Of course, Tommy did pass away almost four years ago. Not a single day has gone by without thinking about him. This has by no means been an easy process, and for those who haven't gone down this road, I pray that you never have to experience such pain. There are no words in English, or probably any language, to describe what its like to find your child unresponsive, to have to make their final arrangements, or put the dirt on the casket that they are interred in. Yet there have been lessons. There has been rage, tears, but at the same time, there also has been hope. So many good people have entered our lives, and stood by us at our time of need, and have continued to provide support. Thank you for that, because I wish I could express how grateful we are, but there's no way that this can be done with mere words.

Later today we are going to visit Tommy's cemetery. My parents have placed a red balloon on it, since that was his favorite color. Its hard to believe that he would be nine years old today, if he was still alive. Time flies and it doesn't, but what doesn't change, is that he is still very much in our hearts. He might be gone, but yet his legacy lives on, as we tell his younger brother all about him. This sometimes is very painful, but it must be done, because that is the best way to honor Tommy. The past few weeks have hurt, I'm not going to lie about that, but we accept that our boy is gone. I don't know what tonight will bring, nor tomorrow, nor the coming days ahead. Yet even with the tears, there is a smile, even with the heartache, there is hope. Hug your kids, and tell them how much they mean to you, because you just never know.

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.

Tuesday, April 30, 2013

Our Young People Get it-Helping out with Angelman Syndrome Research

Growing up, I never harbored any ill intent towards people with special needs. They were simply just other human beings, who were passing me by in the high school hallways, that I attended while just trying to get good grades and go on to the next journey in life. It was an honor and a privilege to have an autistic man in my Boy Scout troop, as he broke down a lot of barriers, and I'm proud to have heard later on that he got his Eagle Award. Yet, I was never passionate about working with kids or adults with special needs, even though I now realize in hindsight that they are among the best people in the world. They go through a lot of challenges, yet they refuse to give up, and shamefully I still take for granted my talents that some don't have. Of course, I don't have a lot of talents, but I don't have to be afflicted with something like Angelman Syndrome. This is caused by a deletion of chromosome 15, and in 2004 my son Tommy was born. He showed a lot of problems right away, was labeled a "failure to thrive baby", screaming for hours into the night. After some time, we got a diagnosis for him, and it was of course the condition named after the discovery of this, none other than Dr. Harry Angelman.

Angels as they are known, are beautiful boys and girls. They are so innocent, and while they may not speak, you can see everything in their eyes. Getting a hug from an angel, is something I recommend to everyone, because once you do you will feel something that is beyond spiritual, and far past the common realm of what we experience as joy in our lives. Tommy sadly lost his life in 2009, to seizures related to AS, and not a day goes by when we aren't thinking about him, nor are a lot of people that he met while he was on earth. I was very much moved yesterday, when I found out about a young lady, attending a school in Connecticut donating half of her lemonade stand proceeds to the Angelman Syndrome Foundation. ( Her name won't be posted here, but from what I have learned about her, has left me impressed as she "gets it," which sadly my generation growing up did not. She is nine years old, and has the heart of an angel, as she is friends with both another young lady, who happens to have a sister with AS.

She spent a day of her time, helping out those, that will have that cure if the cards are playing as they seem to be. The past few years the ASF and other groups, have had great success in discovering potential cures, along with developments that can help people with Angelman Syndrome. One of her statements is impressive for someone her age, and its something that all parents, or those who love an angel can relate to. That is, "I wish she could talk for one day, and tell me what's one her mind." With angels eyes, so many wonder what they wish to state, and God willing that day is coming soon. The research at University of North Carolina Chapel Hill, and others is showing promising results. Also with Angelman Syndrome, as it is on the autism spectrum, might provide an eventual "blood test" instead of a clinical diagnosis, bringing relief to so many families not just in the USA, but around the world.

I hope to one day get the chance to thank this young lady personally, and many families across the US and in other countries, applaud your efforts to find that cure. Know that you not only made a difference to them, but also to so many, that miss their angels but still hope for that moment to happen. It would be a joy, tears of so many hearts, to hear an angel say exactly what's on their minds. I can't speak for them of course, but I feel that they have a message of love, because while this life is often confusing, there's just something about angels that seems far and above our understanding. For this young lady, you not only have my admiration, but you are also proof that "the kids are alright." That song came out prior to my birth, but what it rings is true, and some things do get better with time. This current generation of young people are incredible, and they are so giving with not only their time, but also with their hearts in an effort to help so many others. God bless you and thank you for taking a stand, and for not only helping out an organization that helps so many families, but also may allow angels to one day speak their minds.

Sunday, April 28, 2013

The Majesty of the Caribbean Sea

There is something spiritual about the Caribbean region, and the sea that has its name. This past week our family went on the vacation of our lifetime, and there were indeed a lot of smiles and laughter. We met so many kind people from around the world at the resort we stayed at, and also many citizens from Mexico as we traveled around the country. It was an honor to learn more about the Mayans, whose civilization I began to get more of an understanding with years ago in a college course, where for once I did not skip a class due to how fascinating they are. Meeting Mayans was remarkable, and while much of their civilization was overtaken, their ideas live on in so many fields. As my wife and I watched our son who is now three, and looking more and more like his brother we so dearly miss, brought so many grins, although I do hope that he will loosen up a bit eventually. He did make a few funny comments during the trip, and seeing him in the pool, reminded us of Tommy who passed away in 2009.

One night I strolled the grounds of the sea, and just looked out, as the Sun went down over the horizon. Tears did go down my face thinking about Tommy, and other children I've met with Angelman Syndrome, Rett Syndrome, along with other conditions that so deserve a cure. My prayers I hope are answered, as I prayed for that and for so many families, who have been in our shoes. Some have been quite recent, and my heart breaks knowing the road that they are now traveling on, because it is one fraught with pain and one that no parent should have to. Yet it is the way of life sometimes, and that is why each and every day is to be considered a blessing. As I looked up at the moon and the sea, I prayed for these parents, these children, and all of their families. It felt good and painful at the same time, as there are no words to describe what it felt like.

A lot of thought went into this walk along the white sands, and the water that was so turquoise in color. While I do believe in Christian tenets, I prayed for all regardless of faith or lack thereof, and felt something among the winds on my back.  Those winds kept me standing. May they keep others as well. Life is such an arduous journey, and our world's history has been one with many challenges, both at a societal and individual one. It felt good to get this recharge of the batteries, because while that is a cliche, I felt like a boy again while playing with the sea lions at an aquarium. There is now some energy again, and while I'm not sure where it is going to lead, I pray that God shows me the correct direction and that I follow that exact trail. God be with all of those who are enduring the loss of a child, because while you never will get over it, you can get through it. Also, to those who have children with a medical condition that needs a cure, help is on the way, as our collective awareness at this point in time is better than ever. The following years with these developments, along with the genome and brain projects are promising. May they bear fruit, because there are so many people on this planet, that are waiting for the time when that light bulb turns on.

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.

Tuesday, February 26, 2013

Today Another Angel Gains His Wings

Psalm 116:15 Precious in the sight of the LORD is the death of his saints.

It goes against the grain, to have to experience, the loss of your child. There is no worse agony, no kick to your soul, that will ever test you as this one. This pain rips apart everything that you held to be sacred, and sends you into a descent that is tantamount to 10,000 deaths all at one time. There's nothing more brutal, more sharp, more jabbing of stabbing knives, and you will never be the same because of it. Today a young man with Angelman Syndrome lost his life, and while it is true that people die every day, every moment for that matter, it is hard to hear about a parent having to bury their child. That's because I've been there, and so many others have as well.

Child and casket don't go together. Young man and obituary don't either. Yet these are the reality, and all of our hearts, should be praying for the family of the young man who has no doubt entered the gates of Heaven, without the encyclopedia set of sins we have incurred on the journey. He got a free pass, right in there, because a child, or a person with special needs, is the direct opposite of the evil, the hatred, and the bad that each and every one of us carries in our hearts. We are all imperfect compared to a child, to a person with special needs, because of the issues we harbor with us each and every single day. These folks see better than what we do, without the prejudices and hardness of life, that turns us into what we swore that we would never become.

All of us must suffer. There are different battles that we must all face, and it is my sincerest wish, that no more children have to die. Yet I am a mere mortal, and it is beyond my power, although I do believe that if we all pray enough, the Good Lord will hear our cries and show grace. Often there is a disconnect from the spiritual realm, but if you walk with the man upstairs long enough, you know there is not a shadow of a doubt of His existence. Why do we have to endure such pain, why are so many families having to bury their children, and pick out what clothing they are going to wear as they are put into the earth? I don't know. It is frustrating, and as all of us like answers, there are reasons for everything, and there is not a thing as a coincidence. Prayers for the family in North Carolina right now, and for all families who've taken this journey, of tears, anger, and confusion that no parent should have to go through. Yet know you are not alone, not from the Heavens that cry along with you, nor the folks on Earth who stand beside you on duty, ready to carry on. 

You will never get over this, but you shall get through.

Wednesday, February 20, 2013

CPR Training: Compounding the Tears

About two weeks ago, I had to do CPR training. For most of us, this is a educational course, and if you are not certified I fully recommend you doing so. You might just save a life, because while CPR does fail most of the time to resuscitate a person, its better to give it a shot and an AED greatly increases the chance of success. A lot has to do with time of course, and I used to view CPR courses, as something that was required rather than it being necessary. Also, it used to not pain me, even after doing CPR on a person that ultimately failed. Yet with my son it is a different story. At first I was hesitant to publish this, because I do not want to have people, view CPR courses as a negative activity. That is not my intention at all, but rather I just decided to put this down, how I felt because my last night with my son I had to perform CPR on him.

Training is effective in 90% of major crises in life. However, its taken time to realize this, as with members of your family, especially your children, that goes out the window. The other CPR effort I was involved with shook me up, but at the same time, I felt that I did all that could be done. All of us die, and it is not up for us to decide that day. Yet I slept well that night, and the weeks after, knowing that I did what "The Good Samaritan Act," is about by the letter. I have been dreading CPR training for the past couple of weeks, because it frankly, breaks my heart. My thoughts go to Tommy on the floor, calling 911, and doing this to try to bring him back. I failed of course, and the paramedics did all that they could, to bring our boy back to us. They do this everyday, and I honestly don't know how they do it. God bless these angels, who do everything they can to help families such as mine across the world.

The class had not started yet, and even though I was with people whom I'm very comfortable with, I had to leave the room before a couple of times. Gaining my composure was not easy, as tears came out of my eyes, as I thought of Tommy on the floor that terrible November night. After the class was over, I made a beeline to get out of there, and cried my eyes out under my sunglasses. The next day was not easy, as I went to his burial plot, and just had floods of tears pour out onto the nearby grass. While the mannequin was more robotic looking than human, I still am deeply bothered by this experience, and am glad that I don't have to do be re-certified for another two years.

There are undoubtedly other parents out there, who have had to do the same, for their boy or girl. My heart is with you, as no parent should have to do CPR on their children. Yet this is the case daily, and there are many, who walk among us trying not to think of this process or what it entails. The flashbacks are probably going to be with us, for the rest of our lives, even though they do lessen in strength over time. The most painful times are of course having to take these classes, and anniversary dates such as birthdays and the day our child left us. I am thankful to the teachers of the CPR course, and those who go out everyday, to help people who have a medical emergency. Also, my heart goes out to those in the same shoes, because while we may not have wanted to be put in this position, it is imperative that we remember 30:2 as well.

Monday, February 11, 2013

Places of Peace for Grief

As the father of a child lost, I am surrounded by many good people, of which I am very grateful for. Many of these are people who have been down the same path, and have had to contend with the pain, that never truly does go away. Its always there, just that little cloud that never seems to dissipate, yet at the same time there are places of peace. I was saddened in the past few weeks, to hear of the passing of a six year old girl with Angelman Syndrome. While all children's deaths leave me sad, knowing that another with this condition, hits closer to home for whatever reason. I'm not sure if this is right or wrong, normal or not, it is simply just the way it is.

It will be soon time to take a walk by the ocean. This is a place of refuge, one of very few that provide me with feelings of peace. Years ago, long before I joined a large group of people who've lost a child, I fell asleep fishing in a chair by the ocean. It was a bit of a surprise, to wake up about fifty yards from the beach, and my friends who witnessed it were howling with laughter. I did too, later of course, but there is something about that rhythmic cascading of waves. The sound is music to the soul, and in a few months, I look forward to walking by the ocean on the Yucatan Peninsula. This is of course, the home of the Mayans and other great civilizations, and it is my hope to find comfort in not only the waves crashing, but also of the permanence of their foundations that stand strong thousands of years later.

Whether you find the ocean to be your place of comfort, whether you've lost a child or not, its up to you. As all of us are unique beings, we find spots that are replenishing to our souls. Every single one of us faces challenges, or crosses that we must bear in this life, that sometimes cause us more anguish than one thinks is possible. Yet getting to these places, such as the ocean, or that trail in the woods where the only noise is the birds, is important to each and every human being. Looking out at the ocean, I'm often struck by its size, and its not only a reminder of how small and insignificant I am, but also of the greatness of our creator. We are all blessed, even if there is pain along the walk, because those footsteps in the sand are proof that we do carry on regardless.

Sunday, February 3, 2013

Running on Empty: Hanging up the Cleats

This past week, I have made the difficult decision, to quit running for good. It was agonizing, as I lost sleep over this, but based upon what my doctor's recommending, and how my body feels, its just going to have to be this way. God closes a door, and opens another one I am sure. There is still biking and hiking, so its not the end of the world, and I am very thankful to have had the opportunity to prove a lot last year. Running provided an outlet for a lot of pain, whether it was dealing with the loss of my boy, or just losing weight and understanding "mind, body, and spirit." I enjoyed running in high school, when I could run four minute miles, and this past year I ran a 5:57 mile, which isn't bad for a guy in his late thirties. Also, for the first time, I ran several half marathons. That 13.1 sticker was earned, and with a 7:30 per mile pace, I can rest knowing that even with two prior knee surgeries, that I gave everything I had out there.

The pain at night has been pretty bad, and I was fooling myself after my past knee surgery. Sure, I went out and ran a 7:00 mile, but the swelling became out of control. Now, when the weather changes, I feel it not only in my legs, but all the way up to my spine. Its not normal for someone to eat Advil as if they are "Tic Tacs", and it could lead to liver damage if it continues. Simply put, its not worth it with, what most of us consider "risk vs reward." I am glad that the weather is cold right now, as it has made this decision a bit easier, than if it was during the middle of running season. While I will miss competing, and hanging out with my fellow runners in a sport of so much passion, I encourage those who can, to get out there and move those legs. Running is good for you, and not only does it burn calories, it makes you feel so much better. The amount of energy you'll find is astounding.

I am grateful last year. Running really spiritually helped me to find some happiness, and also meet some amazing people. 2012 was a awesome year, and one that had a lot of valuable lessons. Honestly I never thought I could run half marathons at such a speed, and also lose so much weight, which will now be fought off via other methods. At least I don't have to hear, "Hey Skeletor", from sarcastic individuals who make me laugh with this anymore. Enjoy every moment, and remember that everything has to end eventually. Do I believe in coincidences? Nope. There's a reason I have a new mountain bike, purchased just a few months ago. Its time to "switch gears," and my first goal, is to bike the entire W+OD Trail in one day, and then complete the C+O Canal again. That of course is a five day affair, but perhaps that's in the cards, because while we can't control everything in life, we must deal with what's been handed to us.

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.