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 30, 2012

Death of a Child: Three Years And Out

It has been a little over three years since my son Tommy passed away, on that terrible night of November 4th 2009. That date has been seared into my consciousness, and will remain so until its my time to depart this world.  I don't know when that is of course, but until that very moment, I believe it is important to be more open about death. Death. A five letter word. Something that is uncomfortable for all of us. I used to be scared of it. While I am a fatalist in many regards, you won't see me jumping out of a plane, without a parachute strapped to my back, along with numerous tranquilizers before making that leap. In many western societies, speaking about death is taboo, as if we live forever. Yet that is not the case, and the importance of embracing life, and living it to the fullest is no cliche. Rather its a mindset, and one that I've gained in growth with, even after going through a parent's worst nightmare.

Everyone handles a tragedy differently, and there's no right or wrong way, provided that you don't cause physical harm to yourself or others. If you are suicidal, by all means, call an established hot line to get help. This is a common occurrence after the loss of a child, and I want to tell you that life is so very valuable. You will not get over your child's passing. Ever. Yet you can get through it. After Tommy passed away, my reaction was one of primarily anger. How could my son be dead? What did an innocent five year old do, when I've been nothing short of imperfections throughout my whole life. My anger grew into pure rage, as I often lashed out at people, and would be so rude to folks that truly didn't deserve it. I am sorry that I acted in such a manner, and it is me, myself, and I that are completely responsible for that.

What have I learned from my son's death? A lot. More than I ever knew. I'm still learning, and look forward to each day with renewed gusto, along with more appreciation for the simple things in life. That adage of "looking at the flowers bloom, or watching the tree leaves change colors," is not a joke anymore that I scoff at. Rather I just take it all in, whether out in the woods, or fishing at the river. I laugh a lot more than I ever have, and truly just "enjoy the moment." A recent day in the woods was proof of this. Years ago, I was so hellbent on being competitive in everything. I came up empty with deer, but yet just admired sitting in that blind, the sunset, and sitting in the dark, eerie woods until I was picked up from my location. Before I would have been bitter, yet I left happy as a clam, knowing that I just had a special day that I still treasure as these words are typed.

Do I still have bad days? Yes. Often I cry, and that's okay. I fully recommend it, and to you guys who say that you don't, that's fine but I know you do behind closed doors. Its more than healthy, and will help you clear your thoughts, and go through the stages of grief. These include as Dr. Elizabeth Kubler Ross so perfectly laid out, "anger, sadness, denial, bargaining, and acceptance." They don't have to be in that order, but they are all there when you lose a child. These days I no longer have to force myself out of bed, but those days when I did, they got better. Do I have flashbacks? Yes. Terrible ones that have left me shaken to the core. When you go through the loss of your boy or girl, there is going to be collateral damage, as its a trauma that no one should ever have to go through.

Yet I have learned to live with it. I accept that my son Tommy is gone, and while I know in my heart of hearts one day that we shall be reunited, I must continue to go on. It is my responsibility to be a father, husband, and just a simple guy who does what can be possible. During my period of rage, I thought that I could do anything, and it was beyond psychotic. It was my way of "bargaining", and while I will not give up on finding ways to fund epilepsy awareness or to generate funds for that cure, at the end of the day I cannot wear myself out physically, mentally, and emotionally. That was done, and the fallout from it, was a painful experience that I would not like to replicate. At the beginning of every sunrise, until that sun sets, I am only capable of so much.

There are a lot of families going through this Christmas season, with that empty chair at their table. My heart is with you, as are my prayers. I hope maybe this helps one of you, at least understand the peeling of the onion that has to be done, and perhaps a person out there will realize they have so much to live for. Life is truly great. It is a treasure bestowed upon us each and everyday, and while there are good and bad days, all of them have lessons for us. I'm not going to tell people how they should handle the trauma of losing a child, because each of us are unique individuals, but I do believe in the honest approach. It sucks, it hurts so bad, but yet you must carry on. Whatever means it takes, to get you back in your bootstraps, I won't judge you, and nor will anyone else who's been down this road. You will find out who your true friends are, and there might be some lost along the way. That is fine, as each person has to make that decision, when the time of tragedy strikes, and deal with it in their own manner.

Thursday, November 29, 2012

WCAX in Burlington VT: Lump of Coal in Your Stockings

WCAX in Burlington VT is an affiliate of CBS News, and is run by the Martin Family. They have done numerous stories on children with disabilities, and yet they deserve a stocking full of coal this Christmas season. True they can pick what stories they want to cover, as its common knowledge that they depend on a combination of ratings and advertising revenue. Yet a young lady in their viewing area needs their help, and their News Director has a child with Rett Syndrome. He has my sympathy, but he has far to garner my respect, as if his daughter had metal rods protruding out of her back, causing her to scream at all hours of the day and night, then he certainly would be doing everything in his power to put her into a broadcast. Yet he has failed to do the same for Lisa Anne Weaver, who has tirelessly been trying to get help for her daughter Ashley. There may or may not be folks above him, who have said no, but I have the feeling that he's not willing to throw his weight around. The same can be said for the Martin family, who refuses to answer my kind emails, but I'm happy to report the folks at White River Toyota in Vermont and others who advertise with this station are.

They are most displeased, with the fact that the channel has wrote Lisa Anne a letter, that they can't do "too many human interest stories." Really? Isn't that what we are supposed to be covering, our fellow human beings, including a young lady who spends all day and all night screaming? How about her Mom, a single mother who does everything from working full time, while going to school, to give her daughter an even better chance at an improved life? She has spent hours with specialists in the field, to help her daughter's suffering, and her resilience is nothing short of amazing. Yet what is sad, is that WCAX in Burlington, VA has a show called :the 30, where they have had stories about Down Syndrome, and other conditions. Yet they say again "we can't." Really?

I find WCAX's lack of empathy disturbing, especially considering their news director has a daughter with Rett Syndrome. Therefore, I will like Lisa Anne not rest until her story is aired, and I'm hoping a few folks out there who "are willing to do a good turn" will voice their displeasure on WCAX's facebook wall at This life hands us all a lot of challenges, and its up to us to stand up for what is right, or cave in and just let things occur at a standstill if we are weak. Yet I believe in the human spirit, that quest to never give up, and most of all I trust Lisa Anne, who is an angel in every sense of the word. Her daughter's seizures, pain, have been heard, and now action is required.

You are not being asked to move "the heavens and mountains." Instead, all I'm asking is your help, in letting WCAX in Burlington, VT, that you believe that Ashley's pain has been heard. If you can kindly suggest, that they cover her story, it would be the best Christmas gift you could give a young lady who's in pain that few of us could ever comprehend. It would give her mom some peace during this holiday season. She has written on this blog before, and her piece on Rett Syndrome moved me to tears, and I am frankly inspired by her courage. She is a single mom that does not give up, does not yield, and by God we must all do the same. This is a time that we toss labels aside, such as what a condition is, and back her up. She is working hard with Children's Hospital and other specialists to alleviate her daughter's suffering, let's do the same for her with regards to WCAX. Its not only the right thing to do, its a good turn that all of us can be involved in, and generate not only awareness, but show that we as human beings are capable of doing great things that are relevant to people across the world.

Wednesday, November 28, 2012

65 Million People Have Epilepsy

Sixty five million people have epilepsy. That number shocks me, and one in ten of us is going to have a seizure in our lifetime. Numbers fail to tell the story though, because hundreds of thousands of people each year, die from this condition that so needs a cure. One of them was my son, and many others have experienced this horror, or in the prime of their lives been taken from this earth due to a seizure. I am a fan of the NIH, because this is one governmental organization, that has been effective with regards to medical research. They have developed a lot of new treatments, but still have a ways to go, just like other facilities that are working tirelessly around the clock. It bothers me, that only 1/2 of 1% of U.S. government funded money, goes to epilepsy research, when it affects more people than other afflictions. While some may say, there's a triage of sorts in effect, I counter that with the slice of the pie dollar wise is unfairly small.

Right now there is a mother watching her child have hundreds of seizures a day. A father cannot go to work, because his epilepsy medicine, while helpful, is allowing breakthrough seizures that leave him in bed. Another family is burying their child, because a seizure took their precious loved one from them. The economic costs as well as the pain produced by epilepsy, are impossible to calculate with any set number of dollars. Imagine if one day this was cured, so people with this condition, could fully live life to the fullest and be even more productive citizens? I am in awe of those who have epilepsy, because while they do suffer, they do not give up. Ever. They do the best that they can, trying to avoid so many potential triggers, that their lives could be described as walking through mine fields.

In the U.S. and other countries with access to medicines, there has been progress. Yet people in these lands suffer, and those who are in areas with limitations, death is even more possible. It does not have to be this way. All of the modern marvels we so appreciate, are proof that we can find that cure, if the resources were made available. If you can spare a moment, write to your legislatures and inform them of the importance of a cure. What it means to you, because the more voices that are heard, they cannot ignore the masses. Silence is unacceptable, and a means for failure. In our lifetimes this cure must be developed, and if Steve Jobs' premonition of technology and biology coming together as never before holds true, then we might come to that cross roads. Yet there still is heavy lifting to be done, and not another moment or life, must be lost to seizures.

Saturday, November 24, 2012

The Great Outdoors: Spiritual Refuge for Many

Simply put, I have loved the outdoors since probably before I could walk. While everyone has their own favorite place, that helps to bring them even more alive, there is no better place to be than out walking on hundreds of acres of farmlands and woods. This past week out hunting, I did spend a lot of time looking for my quarry, but also there was a decent amount just enjoying "the moment." The past month has been difficult, as it is the third anniversary of my son Tommy's passing, but yet I am grateful, and in awe of the beauty God has provided us. I thought a lot about him out on the grounds I was on, which were once where bloody civil war fighting occurred, and there's a house on the property where Robert E Lee slept. It was eerie as night fell, and yet at the same time, the day was a joyous one.

Each person grieving losses in life, has to find a place where they can call a sanctuary. Whether that is a church, out on the golf course, or any spot that makes them comfortable, that is essential to your health and keeping your spirits up. Watching the sun rise over the horizon, a bear off in the distance on top of a ridge, and having a mouse in my hunting blind were a lot of fun. Getting the chance to just simply take in the beauty of the Virginia countryside, while walking around the thickets, was something that is keeping me going this morning. While I wish I was still there, a part of me still is, as just thinking about this area keeps my heart full of passion, along with reminding me of the blessings that all of us have.

Its so calming, to just be in an area with no cell phone coverage, out in the middle of nowhere. You really think about life in another perspective. I thought a lot about just all of the blessings over the year, and also about my boy, who I do miss very much. There were no tears here, but rather just solemn prayers and appreciation for the chance to be out here. Parents who have lost a child, I highly recommend finding a place like this. They are everywhere, no matter what state or country you live in. Get outdoors and just spend a day in solitude. It is very refreshing, and a way to realize what is important. That is not getting over the loss of your son or daughter, as that is simply impossible, but getting through, and realizing that even after tragedy, you can grow in ways that you never thought possible.

Wednesday, November 21, 2012

To The Parents in Egypt Who Lost Their Children

لا يهم ما كنت تعيش في بلد، ما هو دينكم، أو إذا كنت تعتقد أم لا. كان قلبي الثقيلة، لشعب مصر، الذي خسر خمسين طفلا في اليوم الآخر. حتى والد الطفل الذي فقد، الذي عقد يديه كما تم إيقاف CPR، لقد تذرف دموع التفكير في ما كنت قد ذهبت من خلال. أعتقد أن كنت فتاة وضع الثمين على أن الصبي أو الحافلة، من أجل حياة أفضل المدارس، فقط يكسر قلوب ببساطة بلدي، حيث يشعر بك الألم كثيرا.

هذا هو أشد إيلاما، كما أعتقد من تومي لي غلام، وإلى أي مدى كان يحبها الحافلات. كانت رموز الحب بالنسبة له، لأنه ضحك حتى وابتسم عندما رأى لهم. غنى سائقه حافلة عيد ميلاد سعيد له، وعلى الرغم من انه كان الإعاقات الذهنية الشديدة التي تسببها له التأخير العقلي والمعرفي، وجهه عندما أضاءت التي تحولت الحافلة الزاوية لنقله إلى المدرسة. أنا لا أعرف ما هي الألوان من الحافلات في مصر، لكنها الصفراء في الولايات المتحدة بالنسبة للجزء الاكبر.

لم يسبق لي أن اجتمعت أي واحد منكم. بعد يكسر قلبي لك. هناك أغنية نيلسون ويل، ودعا "لقد كنت دائما في ذهني." هذا الاسبوع كان هذا ما شعرت في قلبي من القلوب لك. حتى الأب من كان على الطريق من فقدان طفل، لا أستطيع أن تبدأ في فهم الألم والدموع، والكرب الذي سحق كنت على الحق الآن. بعد أدعو لك كرجل بسيط، وأنا أردت فقط أن تعرف أن

Fire and Rain: Joy and Pain

Years ago, if someone put James Taylor on the radio, I'd probably be thinking about knocking their teeth out. To say that I didn't like his music was an understatement, as I simply thought it was wimpy, whiny, and worthy of being thrown into a gigantic trash can. Yet with some age, experience, and challenges, I find comfort in "Fire and Rain." There is just something about this song, and often it plays on my car stereo, as I drive to and from work. I was shocked by all of the interpretations, that people have come up with for this song, and for many they believed that it was about James Taylor's girlfriend who died in a plane crash. That simply is not true, as I found out that he wrote this song, as he faced his demons, that were profound depression and drugs.

I've seen fire and I've seen rain
I've seen sunny days that I thought would never end
I've seen lonely times when I could not find a friend
But I always thought that I'd see you again

The holidays, Thanksgiving and Christmas, are a rough period for our family. There is that empty chair, where Tommy would be if he was alive. Yet, the only place that he can be visited, is under a huge tree in his burial plot. Today I had flashbacks to that terrible night of November in 2009, when I held his hand, as the doctors stopped CPR. Of all the tears that came out of my eyes, the room was so silent, that you could have heard a pin drop. The shock of losing my five year old boy, was so stunning, that I simply did not know what to do. Other than just cry, I sat there in complete paralysis, as did not want to let him go. Yes, I knew the EMT's and doctors did everything that they could have. Even at the time I realized they gave everything they had, and I sit here grateful of that. It was not easy on them, as they are fathers and mothers too.

Tonight I drove home to this song, and hit the right spot. It provided comfort, and a bit of reflection on those flashbacks that showed up. All of the pain of earlier seemed to have been wiped away, and even though there will be more fire and rain in life, I have learned to accept Tommy's passing. Its not been simple, and there were tears today, and there will be more, just as the sun rises and sets everyday. I have been doing a lot of thinking lately, about what needs to be done in 2013. There will be efforts to raise awareness about epilepsy, as I am still blown away that 65 million people around the world contend with this condition. Expect to see a lot of purple on a bike trip, and if this knee that's recently been worked upon again heals more, there will be an extensive journey taken down the entire C+O Canal. There will be running, with a shirt that says "Ask Me About Epilepsy."

Our entire family has suffered, yet we are not alone, as there are countless members of our fellow human beings who have been down this road. Its not the easiest one, as there are twists and turns, along with a sense of emptiness and purpose at the same time. That may not seem to make sense, but that is the new reality. Life gives us all "fire and rain," as there's no easy ride, and all of us have our struggles that we must contend with. Just like Giles Cory asked for "more weight," we all have that luggage that tugs at our heart strings, and makes us question exactly what we are doing here. James Taylor provides the answer. That is to "make a stand." It does not have to be anything special, but rather it has to just be from the heart, and with faith and resilience through the tears and the smiles.

Monday, November 19, 2012

Cataclysmic Events: You Never Know When

Cataclysmic events shock us, as we never see them coming. This past week, 49 school children in Assuit, Egypt died in a bus, as a train collided with it. My heart breaks thinking about their last moments on this Earth, and the devastation that all of their families are going through. They were putting their children on that bus, just like so many of us around the world do everyday, expecting their boy or girl to get a decent education. A mom put an apple in that bag, a Dad kissed his daughter goodbye at the bus stop, having no idea that this would be his last opportunity. Tragedy strikes when least expected, and while its going to take time for the Egyptian Authorities to figure out what went wrong, there are lives ruined forever. These parents, siblings, aunts, uncles, and friends are going to be entering a challenge that they never foresaw.

Dreams ended with that impact. The same could be said for seizures, that have crushed those of children and adults who have epilepsy. Just like the power of a freight train, they have taken far too many kids away from their parents, or too many adults living productive lives away from us. Well over 100,000 people die a year from epilepsy. I don't have the exact figures, but 1/2 of that number is in the USA alone. A father, a mother, son, daughter, or friend gone. It is morally reprehensible, that only .5% of medical research funded by the US Government, is devoted to epilepsy research, when roughly 5% of the population contends with it at one point of their life. More people have epilepsy, and die from it, than so many other conditions that get a whole lot more funding.

The epilepsy community across the world,  has been railroaded, and its time that we climb from the caboose to the engine. I am proud of organizations and researchers, that are working around the clock for that cure. True, there are many different types of seizures, whether people are born with them, or experience them after sports or combat trauma. There are so many triggers for seizures, and these can cause the brain to get the irregular signals associated with epilepsy. Far too many parents have had to suffer the heartbreak, of hearing their child died from a seizure, found their little on in their beds unresponsive, or had to make the toughest choice of all by pulling life support. Each of these lives are valued, and all of those lost are dearly missed. There are people around us, I am one of them, who has the scars of a child lost. True you might not be able to see them, but they are always there, as each and everyday I wake up knowing my Tommy is no longer with our family.

This train wreck hit home. While I cannot say that I've had to suffer like these parents in Egypt, I understand a bit about the road that they are going to face. Especially the "if only's". There are so many grieving moms and dads, and my prayers have been with them, since this awful tragedy. They are going through a living hell, and all of us should be thinking about these folks, who just a few minutes ago had seen their children alive and well. الكثير من الحب وكثير من الصلوات لأسر، والمشاركة في مأساة قطار المصرية.

Saturday, November 10, 2012

To Those Who Have Lost a Child

If you have just lost a child, my heart is with you, as our family has been down this painful road. A little over three years ago, our beautiful Tommy departed this earth, and not a day has gone by that he's not thought about. Bits and pieces of that terrible night, still continue to linger, as memories that can conjure up tears at a moments notice. There is no getting around the anger, grief, denial, bargaining, and acceptance. Dr. Elizabeth Kubler Ross was correct about this, and it is going to challenge you, like a knife through the very essence of your soul. You will never get over it, yet you can get through it. For siblings and others, I highly recommend age appropriate honesty. That is the only way to grasp the significance of what has happened, by facing the harsh reality, and admitting that you have been thrown a punch to your life that you will never fully recover from.

Yet, there is hope. I am deeply thankful to so many, who have helped me keep my moral compass, "righting the ship" for better words. Life has changed, but yet I am still content. In some ways, I enjoy everyday even more now, as each day no matter what is a blessing, it is to be savored. Anniversary dates are painful yes, and many tears are shed at these times. Yet they are times for self-analysis, and reflection about what my son means to me, and how I can be a better man. Each person handles grief differently and that's okay. Its what makes us human after all. There are so many walking with you, millions of us across the US and around the world, are going through this experience all of the time. The adage "everyone dies" is true, yet even through the most painful of losses, you can gain knowledge and new lenses that allow you to see in a completely different way.

Embrace life. Sometimes this is easier said than done, but really it is imperative. There will be a "new normal," and it does not have to stink. Will there be days that you don't want to get out of bed? Yes. Yet at the same time, you will learn to understand the beauty of the most simple of things. I used to laugh at folks who said, "Spend time to smell the roses." It sounded cheesy, and in my opinion ridiculous. Yet its true in a figurative sense. Just going on walks in the woods, and looking at the beauty of the leaves changing recently, was a good way to spend a day. Sitting with my fishing pole by the river, and not catching any fish, was a perfect time. As the waves rocked the pier, I just found a "little slice of Heaven", even if my bucket was empty my heart was not.

You have been given the greatest challenge, by having to go through the loss of your precious daughter or son. Its up to you whether faith is important or not, as each person has to decide for themselves whether that is the correct avenue. I'm not a preachy guy that's going, to ram it down your throat, but I do believe in something greater and bigger than all of us. Do I know why to many questions, including why my boy passed away? Nope. Yet when that wind blows when out camping in the woods, or I've met people like Brother Bill, who fought his life with dignity through the horrors of Jim Crow, having his father leave his family at a crucial time, serving on the front lines of combat, losing a child, and now protecting a church I am inspired. I hope that all parents who have gone through this pain, can meet their "Brother Bill," who steps up at the right time, to help them realize that there is a path that can be taken. Acceptance is hard, it takes time, and there's no clock on it. Yet when it does happen, then you will as Dr. Kubler Ross writes " that person who has been changed for the better."

Saturday, November 3, 2012

Three Years Since the Death of my Boy

Three years ago, my son Tommy passed away from an Angelman Syndrome related seizure. It has been a difficult journey, one that I would not wish upon anyone, and this wonderful boy is missed by his parents, grandparents, uncles, aunts, cousins, and friends. Our entire family has shed a lot of tears, more than enough to fill gallon size buckets, but we are still standing. We still love one another, and carry on Tommy's spirit with us each and everyday. This weekend is painful, as it is a reminder of that awful night, as no parent ever wants to find their child unresponsive. To sit next to your own flesh and blood, on a hospital gurney as his vacant eyes, look up to the Heavens is the worst place you can ever be. That night is still a flurry of jumbled thoughts, and powerful emotions that still permeate to this day.

Other parents and families across the world, have been down a similar road. Everybody dies, and while the loss of a child is the worst scenario for any parent, I am a content man in many regards. I don't want nor expect any special favors, but I am glad that the anger has abated. That was my prevailing theme for a long time, as I was just furious about how my son could be taken from us, and how at only five years old he was gone. Its not fair, there's no denying that, but it is the reality. The sadness, that baggage that accompanies such a loss, is sometimes heavy but lifting is required. At the same time, I see life through new eyes, a different perspective than before. While I still do complain, it takes a bigger haystack now. Dealing with what used to be difficult, I often laugh at how trivial it was.

There have been tears this past week and in the last few days, and that is alright. I went to Tommy's grave yesterday, and felt sad that another child's burial spot was just established on the grounds of the cemetery. My heart aches for this family, because even though I do not know them personally, I understand their pain. Each of us handles grief differently, but that soul searching, bottom of the barrel hurt that accompanies such a loss, is akin to a tornado ripping your heart from out of your chest. While the cemetery does bring me a sense of peace, with the wind chimes in the tree that overhangs where so many children lie, I just take in the amount of graves that are occupied by so many children.

I wish that everyone could live until one hundred years. That's not up to us of course. Instead, life is full of mysteries. There is joy, pain, and everything in between. Yet even with that sorrow, I have come to the conclusion, that each day is a blessing and should be treated as thus. You never know, when it will be your day, or someone you love's time. Each step on this earth, every breath of oxygen, is not something to be taken for granted. Rather, it is a gift. I do not know what the future brings, but I am thankful to my wife and entire family, along with other folks who have different last names, but are family in every sense of the word. My hopes, my prayers, are for all children with Angelman Syndrome and other conditions that can lead to such a tragedy, to find that cure that so many parents around the world want for their little girl or boy. Their cherished angel. Be sure to love them, and give them an extra hug. Let them know what they mean to you.

Thursday, November 1, 2012

A Nickel Spinning at the Restaurant

A nickel spinning. That five cents with Jefferson's head prominently featured on the front, and the back his beautiful Monticello estate. In a world that pays with plastic, this metallic piece is hard to come by. Yet there it was spinning in front of me at a restaurant, as I reached for my wallet, and it dropped out on the counter. Five cents doesn't buy you anything, but five good years of life are a blessing. Three years ago our boy Tommy, succumbed to an Angelman Syndrome related seizure, and he is missed every single day. Seeing his clothes, looking at his pictures, or even hearing a song that he used to bounce around to, it cuts like a knife.

It was so painful prior to this nickel spinning, in a toy store, as the song "When You Wish Upon a Lucky Star" played. Last night his younger brother and I watched Pinocchio, and I couldn't help but think, Angelman Syndrome used to be called "Happy Puppet Syndrome." That is of course derogatory now, but in many ways, Tommy was the happiest human being I have ever seen. He just lived life to the fullest, whether it was riding a slide at the pumpkin patch, or playing with Christmas paper. I wish that as a human being, I could be like him, or other children with Angelman Syndrome. They are the best people I've ever met, innocent souls who do not do anything to ever harm another person. Their world is one with laughter, smiles, gusto, and a determination that is hard to put into words.

For five years we were lucky to have Tommy. Even with his passing, and the great sadness that has followed, I still believe in the goodness of people. My faith has been tested, to a degree that I wish upon no one, but I must carry on for his younger brother's sake, along with my family's. That spinning nickel so personified what it feels like, to go through the pain of losing a child. Three years out, and while the anger has subsided, that pang of grief can turn on at the drop of a hat. Anniversary dates such as Tommy's birthday, November 4th, and Christmas are particularly brutal. Sometimes he feels so close to me, in the essence of my soul, and yet at other times he's a distant memory. Yet he is always there, in my heart, and until my last breath I will never stop grieving.

I don't know what lies in the road ahead, other than there are no guarantees. Each and everyday alive is a blessing, and I'm grateful for each and everyone, whether its full of joy or in deep sorrow. It has been a learning experience in many regards, and I see life with a new set of lenses, which can be both good or counterproductive. Yet there are so many, that are among us, who have walked this trail. They have heavy hearts, pain that will never go away, and to parents who have just gone through such a tragedy, my prayers are with you always. You will never be the same. That is a given. Yet much like that spinning nickel, this one with the date of 2003 when Tommy was in the womb, this world is full of possibilities and challenges that have yet to be completed.