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.

Sunday, July 29, 2012

The National Aquarium in DC: Reflection Does Exist Everywhere

Reflection is so important in life. Sometimes it is just necessary, to contemplate what we have been through, and what we are supposed to do as part of our mission on this planet. Today was a joyous occasion, because while this past week has been very painful with Tommy's anniversary of what would have been his eighth birthday, going to the National Aquarium today brought a lot of smiles and some laughter. Those are important elements to living a purposeful life, and in many ways, looking at Tommy's younger brother's eyes watching the fish in tanks, made me realize that this world is our oyster. We are supposed to explore, learn as much as possible, and partake in as many experiences as we can. Going to the aquarium may not be climbing Mount Everest, or seeing the Great Wall of China, but it is a moment in time that was simply peaceful.

I will never be a rich man. Yet I will have in my heart, experiences both good and bad, that are lessons. These are more rewarding than any sort of financial gain. Today they were relatively simple. Patience. Yes, the ride in to D.C. was not easy with the Metro System experiencing its "usual delays," but we got to our stop safely. Walking around the Nation's Capital, and seeing people having a good time, made us all happy. Yet it was looking in my son's eyes, as he saw the fish, turtles, and even sharks swimming around that made it worthwhile. For a near three year old, he made us laugh, asking "are those fish going to eat the alligators?" "Can I swim with the alligators?" No! He got to touch the Megaldon Shark(now extinct) tooth, along with a great white's. Holding that Great White's tooth in my hands, I was amazed by not only its beauty, but what it is capable of. The highlight was seeing my boy hug a shark mascot, and then getting scared beyond belief, by a floating shark toy coming out of the store. When he misbehaves, I think I might just have to buy one of those. :)

Next week I'll be back at church, as that is where I like to go on Sundays. It is a place of refuge, from not only pain, but it also brings a level of peace that I cannot put into words. Our family has suffered, as so many others, and there's no rhyme or reason to it. Yet today, we were able to for a few moments, just enjoy being out of our usual element. It felt good, and made for a Sunday that, might have been simple but had plenty of lessons. Life is not fair, but it is an adventure, with turns that are often unseen, but lead to new knowledge. Who knows what tomorrow will bring. God willing it will be full of joy, new opportunities, and a deeper appreciation for the simple things in life. The world is our oyster.

Wednesday, July 25, 2012

Hug Your Children-Angelman Syndrome and Its Importance

We sometimes live in a comfortable, isolated from the world bubble, that allows us to put out unpleasant realities away from us. In 2004, I was devasted to learn that my beautiful blonde haired, blue eyed boy Tommy, had a condition called Angelman Syndrome. It was a shock to my soul, and yet, it wasn't the hardest test I would have to face and still do. Death lurked around the corner. I cannot hug my son right now. All I can do is think about him, or sit by his gravestone, and wonder what could have been. What should have been. Even though I do hope to live a long life, whatever it says on my death certificate, it will be from a broken heart.

Today parents are finding out that their little girl or boy has Angelman Syndrome. They are no doubt, crushed, as every dream they had has been thrown out the window. Their child, at least for now, will probably never say a word to them. They won't play baseball or get that report card for Mathematics. Instead, just learning how to walk and maybe go to the bathroom, or somehow getting some rest will be in order. Angelman Syndrome is a rare condition, at around one in every 10-15,000 births or so, caused by a partial deletion of chromosome 15. I am thankful that most parents never have to go through this, and although I love angels with all of my heart, I do hope that a cure will happen. There are just so many dangers with a child who cannot verbalise what they are feeling, and their adventurous spirits can cause them numerous hazards.

This past week the clouds have been heavy. In fact, this past month, as the Angelman Community across the world, has learned of two young children with this condition going to God far too early.I would not wish upon my worst enemy, if I had one, the diagnosis of this condition or the loss of a child. It is a pain that is always with you, and those who are going through this agony right now, I cannot promise an easy road. In fact, its going to make you question everything in life. The best way to describe it is a knife to your heart, and flipping everything you believed to be true, upside down and spit out in a multitude of painful chunks. These families are going to be facing anger, depression, guilt, and tears that will fill buckets.

Yet we must not give up. To parents of angels, whether you've been hugged by one for awhile now, or are just finding out, there are new developments. I pray these work, as there are two different approaches being tried that I am aware of. There might be more, whether in process, or down the pipeline. Yet even with science moving as fast as it is, seizures, accidents, and other health related conditions associated with AS are going to kill children. That is why it is so important, so necessary, to appreciate every moment with them. Take yourself out of the box for a moment, and imagine your life without them, forever. Reflect on what it would mean to bury your little one, getting their clothes in their coffin, and saying goodbye to them as they are lowered down.

I miss Tommy everyday. Sometimes I brood over how it took me so long, to accept that he had this condition, and there's nothing that I can do about it now. I wish I could have hugged him one more time, stroked his hair more, and just spent time with him in the pool and other places even more. My own anger at his diagnosis caused me, to miss so many valuable moments that should have been cherished. I'm proud of how hard he fought, yet I am bothered by the fact that he died in his bed alone. No more of our children should have to go through this, and no more parents and families should be crushed, by the despair of seizures and other conditions that are related to Angelman Syndrome.

We must be unified in prayer for a cure, but at the same time, enjoy every moment with angels who reside with us. Mine now resides in my heart, but each angel should get more hugs, more love, and acceptance in everything. I am so thankful to my wife, Tommy's grandparents, Uncles, and all who were a part of his life. Often I think about him at school, and while sometimes seeing a bus causes a moment of heartache, it usually produces a smile. I think of him on that bus bouncing around, smiling, knowing that he was going to a place that most of us would fight to stay away from. May his education in Heaven be fun, with lots of water and the love of God, because Earth is a seriously confusing place. Hug your angel, and hug him or her with even more love, because you never know when. You just know now.

Engage! Combat Seizures Head On

I love the Wharf line from the Star Trek movie, where he says "Perhaps todays a good day to die," as he battles with the Borg. That is one incredible scene, and is a lot like the outer space version of John Paul Jones and his battle with the British close to 300 years ago. Seizures are a major issue for people around the world, as one in ten of us are going to have one, and epilepsy affects millions. Seizures are responsible for the death of my son, and so many more, as SUDEP is a killer that throttles a person's life, and crushes so many dreams. While we cannot fight seizures in a physical sense, which is frustrating, we can combat them head on. Just like Captain Jean Luke Piquard of the Star Ship Enterprise used to yell, "Engage!"

Silence is acceptance. There has been enough of that, because while seizures do force families to spend hours with their little girl or boy, we must be out on the front lines. This can be done anywhere, whether its at an organized gathering such as a flash mob or conventional march, or through events that generate awareness to the pain that seizures have caused. Putting a human face on it, is how this battle shall be done, but even from our computers we can move mountains. Efforts on the internet such as "turning the White House Purple" are good, and keeping pressure on your local representatives in Congress is helpful. If we can gain allies, traction is going to help us pick up even more. It all starts with grassroots efforts, such as races, and other outdoor events. Making those personal connections is important, and now we have to help our fellow returning veterans, whom are going through Epilepsy disorders related to their times in combat zones.

There are groups like the Epilepsy Foundation and Cure, where you can start sponsor pages, and blogs are vital to getting out the word. Facebook and Twitter can generate awareness, and if you can help get one person to email their representative to support efforts at NIH, we are all one step closer. You might be skeptical of this, but from a former Congressional worker I know, he has told me firsthand that yes form letters are sent out, but if enough roll in, it is going to make it through to the appropriate channels in power. That is every nation in the world, and not solely confined to the United States. So whatever you can do, make a phone call, send an email, write a letter. Go out there with a purple shirt, pass out cards with a website you create, these efforts are all part of a battle that we are in. Engage!

Monday, July 23, 2012

You are Going to Die Ha Ha!

Laugh because one day I'll be joining you on this title. While I cannot plan on how its going to happen, its written in the stars, and its my hope to live to well over one hundred years of age. Yet that is not up to a simple man, but rather God, Jesus, and the Holy Spirit, but I do hope that when called upon, I shall be ready and it will not be an uncomfortable experience. The Naked Gun movie is one of the best ever, mostly because it is immature, but also because of that scene in the hospital, where Lt. Frank Drebin talks about horrible ways of dying. Here lies his partner in a bed, after being shot who knows how many times, as he is trying to console the wife. Great stuff, and while I don't want to fall off the Empire State Building and land on a bicycle with no seat, each and every birthday is a reminder, of not only my mortality but the ultimate reminder of getting goals accomplished.

In order to embrace life, you have to appreciate death. That's the bottom line. While I wish no parents had to bury their children, no grandparents, uncles, and aunts, didn't have to go down a road of such pain that a knives sharp edge pale in comparison, that's the reality of the situation. People, and children for that matter, die every single day. Hour upon the hour, like Headline News, and yet the world continues to "go on," even while a family's spirit is crushed. That is how it is supposed to be perhaps, as it is written in the stars, in the Heavens, that are so close to us, yet remain so far due to pure fate and a loving God who guides us along the crevices that threaten to swallow us into despair.

Its a fast paced world we live in. Until Tommy's passing, I never realized the importance of death in our lives, along with the necessity, of sometimes just appreciating a view, or experiencing new things in life. I'll never be wealthy with a heavy wallet, but what I intend on learning, well there will be a wealth of knowledge and experiences. I forgot who wrote that "life is but a collection of photographs and memories," but that is accurate, and each and every day is to be cherished. It is a blessing, and a reminder that when we wake up, that small ration of time is to be used productively. Whether you are spiritual or not, each time you wake up in that bed, count your lucky stars that you have a chance for new opportunities.

Death is an uncomfortable subject. I understand it when I see people squrim, but its coming for you, more and more every day. Do not jump out of a plane with a parachute obviously, but do accept the reality of this, and that your fate has already been decided. Love one another, and get out there, never giving up for a moment, standing up tall, with what life throws at you. This fishbowl we live on is temporary, yet our next stop, and the legacy we leave others is what is the most important. Stand tall and firm, because eventually one day I will, as a taxidermist is going to put my body in a bar, with a beer, and cigar in my hand in a jogging outfit. Then my road ID bracelet will be correct, "that I'm not running anymore."

Friday, July 20, 2012

Freedom Summer: Why We Must Mobilize Against Seizures

Right now, there are children having hundreds of seizures per day. Adults are finding out that they now are going through these events of epilepsy, and we must find a cure. All of us can agree upon that, and much like Bruce Watson's "Freedom Summer," I believe "we shall overcome." There have been too many victims to seizures, as not only my son, but so many more have had their lives, stripped away from this menace that needs to be eliminated at all costs. It is an outrage, that only 1/2 of 1% of U.S. medical research goes towards epilepsy related research, when close to five million of her citizens, are contending with this. When you add that number, and put it on an international scale, it is even more shocking.

"Freedom Summer" was about the 1964 civil rights workers, who went into the then bastion of hate in Mississippi, and fought racism head on. Black and white, young and old, were brutally beaten and even killed. Yet, in defiance of so much brutality, they stood up. They did not give up, and while they faced adversity such as shotguns and dynamite, their spirit carried them on to many successes. Is racism still around? Yes. Not only in Mississippi, but in other states, other countries, it is a worldwide phenomena. A shame it is, that people have this hatred in their hearts, as it is a epidemic that not only hurts others, but those whom have it in their souls. Yet progress has been made, and in lieu of the brave volunteers, who often fought with each other and disagreed, they came together for a common cause.

That is why all groups affiliated with seizure research must do the same. We are not going to agree on everything, but we are certainly going to need to support each other. This is our time, and much like how Edmund Murrow withstood the bombings of London to describe what was going on, we must be willing to step up and be bold. This is going to require unity on that front, and it is unacceptable, that children right now are seizing up, having their cognitive abilities stripped, and brothers, sisters, parents, and grandparents wondering "Is this the time?" Many of us have been in those shoes, and they are heavy to wear, but even with that extra weight they must trudge forward. Even through pain, tears, and questions that linger in our souls each and every day, we must keep that lantern lit, so that no other children will die from seizures.

Its up to us. Whether you believe in God or not, you cannot help but admire the human spirit. It has been on display so many times. Whether it was the folks responding to evil on 9/11 with compassion to their neighbors, or the daily good turns that each of us are capable of, there doesn't need to be a "hammer to the Berlin Wall" type of movement. Rather, its just one of consistency and being constantly vigilant, on any sort of alliances we can make as human beings, as we are so interconnected. It does not matter what condition causes the seizures, but rather attacking together, just like those freedom workers, who set up schools and built a foundation is what we are called upon to do. It is an obligation. Yes it is painful, and there have and will be tears until we find a cure. Yet much like Dr. King said "We shall overcome," and that will be done through sheer resilience and tenacity that you cannot put a name to.

The Stupidity of Life

A few days ago, I ran some of the best times I ever have, and also without my bright red Nike's that have seemed to have brought good luck. I felt good, at the top of my game, and the competitive juices flowed through my veins like a high I hadn't ever experienced. The past week was stressful at work, with quite a few battles to contend with, and I just felt as if "You just kicked life's ass in every regard." A quick visit to my allergy doctor's office changed that, as I had my usual shot, and went into whatever the hell you call it reaction. I started coughing, had difficulty breathing, and am glad that the nurse and doctor gave me a shot of the adrenaline. Honestly I don't know how to spell the pharmaceutical word, but it was one of the biggest rushes I have ever received. Wow. That stuff is powerful, and left me shaking, but damn if I didn't love that feeling.

Sleep has been elusive the past couple of nights. I do not know if this is lingering effects from the shot, or pure anger that I felt over being ordered not to run or engage in outdoor activities. I have full confidence in the doctor and staff, but felt sorry for myself. How could I be the 1/2 of 1% that has an adverse reaction? What did he mean, by running and outdoor activities may have to be changed? I was furious, in fact, I about exploded. I am a fatalist, and believe when its your time it is your time, along with being even more angry about having gone a year of these shots twice a week, and having dropped so much weight and gained so much, to just see it wiped away really got under my skin. Being competitive is fine, but today as I wake up to the sad news from the shooting committed by nothing by the heart of evil, I realize the stupidity of it all.

I will run again. Whether or not the doctor says yay or nay. Yet these people in Colorado will not. Their families and friends are in agony, and people around the world have it a lot worse than I do. It was so stupid to be upset over a few days ordered home off work, and away from running. Even if I'm not allowed to, or have to have epipens with me from now on, or make other restrictions, what's the big deal? Life isn't fair, and my minor flare up, is nothing compared to the great sadness that so many are going through. While I watch even more what I eat this weekend without the physical activity, people are going to a morgue to identify their son or daughter, from that terrible evil. There are set backs and frustrations in life, that's just the bottom line.

Our hearts should be with those families today, and tomorrow. Always for that matter. I sit here shocked and saddened, by what should have been a happy event turning into such a bastion of hatred and evil. There is evil in this world, but good must triumph. There are frustrations in life, but they must be overcome. Last night I watched "Inglorious Basterds" and enjoyed it immensely. I've also spent the past few days spending time with my near three year old, teaching him geography and watching him turn my breakfast into an all you can eat buffet. Time marches on, and it is my solemn duty to teach him about his older brother, what really matters, and carry on. Its what we must all do, soldier on.

Wednesday, July 11, 2012

Romans from the Bible, A Lesson We All Can Understand

“Suffering produces endurance, and endurance produces character, and character produces hope (Romans 5:3-4).

I love and respect all people, whether they are adherents of Christianity, another faith, or don't believe in a higher power. It is not for me to judge, as I am nothing but a simple man, who just tries to do the best he can. I am a sinner in religious terms, a screw up, or perhaps even worse. Some call this "being human." Humanity. What is it? It is a experience we are all part of, each and every day holds new challenges and possibilities, dreams, failures, and times of triumphs, and moments of tragedies. If you look back at history, we are progressing in science and so many fields of technology in medicine and in elsewhere, at an unprecedented pace. This is in many ways positive, and if you pray, please consider adding children with special needs, and their families to your list. The same Providence that has led men and women to so many cures and discoveries, we must keep that beacon of light on at full blast.

Right now there are more people dead, than there are alive on this Earth. Seven billion folks inhabit this planet at any given time, give or take a few. Each of us is going to be born, and of course on the tail end, we are going to die. There's no rhyme or reason to when, and often the passing of a young child leads to so many "why's?" Years ago after doing CPR for the first time, on a man who was in his fifties, I was pretty shook up. I didn't want to admit it, but I am thankful for words that seemed to be rough at the time. A supervisor of mine showed up, sat me down, as the paramedics pronounced the man dead. I knew this as the AED machine used showed no heart rhythm, and would not deliver the shocks to kick start his heart again. He was gone, and there I sat with a bottled water, as the ambulance left the scene. "Mike, people die everyday." He gave me a tap on my shoulders, looked me in the eyes, and walked away.

These words are so true. It sounds so callous, but in reality, its the best way of putting such an event into its proper context. Our lives, regardless if we live five years or one hundred, are the mere blinking of an eye, when compared to everything else. We are nothing but dust in the wind, or as we sing in church, grains of wheat strewn about. Some of the most amazing people I have met, have contended with a tragedy, such as Brother Bill who I met at my time of greatest struggle, and have guided me onto the proper path. Sure it has been bumpy. I have caused people a lot of pain, and I am sorry that some have had to contend with my temper, as I am a work in progress. Right now there are parents right now, going through similar journeys as a wise man from New Zealand named Darren describes it. I like that term, as life and death are certainly that, elements that are part of the bane of our very existence.

I do not want people to feel sorry for me, or our family. Rather, I just want to say thank you to all the people I've been blessed enough to meet over the years, in good times and bad. I love life, even with its good days and bad. Each one of them presents a challenge, and two paths. Who knows what the next year, and the following years shall bring, but I pray everyday for a cure for Angelman Syndrome, CDKL5, Rett Syndrome, and all sorts of conditions to have that great discovery. It is too late for my son, but it is also too late for so many others. That is a burden that we must carry, but ultimately each person I have talked to that has gone through the experience of burying their child, still continues to hope for a cure for these. That is love, and I believe it is an extension from God, that we are able to carry on, in a life unexpected but life nonetheless.

The Bible and I always haven't gotten along. For instance, I have a hard time reading it. It makes no sense, as I can go through Constitutional Law books, understanding the minutiae of decisions that are heavily loaded with latin terms. Yet, the Bible other than Mark and Romans, is very hard to comprehend. Yet it is Romans that is correct. Not only with the verse above, but with the one that describes us all as having strengths and weaknesses. Each and every one of us has gifts, and at the same time we have other areas that we are lacking. It is my hope that all of us, can at the very least, continue the prayers for those with serious medical conditions, and to love one another more. Love your neighbor, and may we all support each other until that day, when we can all bring out that champagne bottle and have one heckuva party.

Tuesday, July 10, 2012

Anniversary Dates are Painful Reminders

All of us who have lost a child, know deep down in hearts, how much the anguish of two days in particular can be. That would be the day of our child's birth, and when our little one gained their wings. They are missed so deeply, and there are not enough tears, to make up for the pain caused in any sized bucket. In the coming weeks Tommy would be eight years old. I try not to dwell on it, but it is unavoidable. The gloom has set in already, as I have looked through pictures, when he was born. What a joyous moment that was, as tears of joy came down upon my face, and I will never forget that moment of being a Dad. True, the world will keep spinning on this day, just like it does when other children pass away, or other parents go through similar pain.

Life carries on regardless. I do not know if I am working that day, or what I will be doing. Yet I know that there will be clouds, no matter what the weather. That evening of 2004 was amazing, and looking through those pictures, often cause me to simply put them away. I can't bear to look at his pictures, our families happy faces, and his locks of hair and footprints from his passing are left untouched. Giles Cory's "More Weight" is so applicable on this day. It is hard to believe that it has been almost three years since that fateful night. There is no way to explain it, as sometimes it feels as if it was yesterday, but most of the time it feels as if it was from another lifetime.

This year there will be tears. There often are. I still have more questions than answers. Yet perseverance is the order of the day, faith is what is ultimately required, and to carry on as a good example to my other son until I am called home. I am not alone, as so many around the world, have the same sentiments on these "markers of remembrance." The other day I went to his old school, and just walked around to see his memorial stone and bush, along with touching the playground that he used to play on. Perhaps this year I'll drive by the hospital he was born in, see the old condo we used to live in, before we moved into our current house. I don't know what I will do, but Tommy will be foremost in my mind, thoughts, and in my heart.

The pain has been immense, but I am thankful for my faith, which has been cracked, but not crushed. I am thankful for my family, whom I love so much, and to countless friends from so many backgrounds, so many nationalities, all of whom I am grateful for each and everyday. So many people, whether they meant to or not, have been a rock, a solid foundation, and for that I am forever indebted to them for their kindness and understanding. Much like a rock has a lot of edges, the waters are smoothing out those that bear pain. It will never go away completely, yet each day is a chance for redemption, and for new challenges. God bless you all, and may all who've been down this road, know that you are never alone.

Monday, July 9, 2012

Grandparents, Uncles, Aunts, Siblings: The Death of a Child Affects so Many

A cherished child being placed six feet deep, is not in any dream of a grandparent. Nor is it in the thought process of a brother, sister, aunt, or uncle. Families are impacted by the death of a child so harshly, and its not only the parents who suffer. I know that whatever I die from, when its my time as each day is one closer to the grave, I hope that coroner or medical examiner, will have the decency to write "broken heart." Not only have I wept for my own son, but for my wife, the grandparents on both sides, my brother, my wife's brothers, and even for my youngest son who's too young still to understand the significance of Tommy's passing.

I will tell him the truth of course. That the last time I saw Tommy alive was before he went to bed. About my poor brother finding Tommy unresponsive. About having to pick up the phone to call 911, and to start CPR on my own flesh and blood. I have cried when my little near three year old, has asked me what that purple hand print of Tommy's is on the wall. Yet I told him exactly who's hand print that is, and I will if so lucky, be around for another 63 years or so, to tell him everything I can about his brother. Its not an easy task to be the parent of a child who's gone to God young, but I must carry on.

Grandparents are a key cog in a family, as are aunts and uncles. I was blessed to have grown up with fantastic parents, and I am so glad that they are still very much a part of my life. Each day I am thankful for their love and support, and I am proud of my brother, who is the world's most awesome uncle. I love my wife dearly, and do not know how she has done what she has done, but I admire her strength. Losing Tommy has taught us a lot of lessons. Most of them have been so painful, such shots across our bow, that even the penetration of a hot bullet would pale in comparison. Yet they are lessons no doubt, and we much learn from them.

This past week two more children passed away from seizures, leaving two families full of love, to pick up the pieces. I feel for them, because while I cannot say that our reactions and how we handle such anguish will be the same, I know of that soul numbing pain that just leaves you in shock, and turns your world upside down. It is my sincerest of prayers that they as families, all generations, are able to band together and love one another so very much, because each and every person is going to need just that. There are going to be whole hosts of emotion, bitterness, sadness, and ones that cannot even be described. I do not admire what you are going through right now. There are more who are going through such tribulations and trials today. You aren't alone, but it does not necessarily soften the blow. Yet persevere you must. Together, as a family, because when it boils down to it, no matter what our last name or background is, that is exactly who we are.

Saturday, July 7, 2012

Running is a Spiritual Experience: Act II

About eighteen years ago, I was on my high school's cross country and track teams. It felt so good to run those five minute miles, and it took no effort. To be honest, I took it for granted, just like I leaped across those hurdles with no physical limitations whatsoever. A first knee surgery was needed, due to not listening to my body. As a young buck, you feel that soreness in your legs, and just keep on running. You just want to be the best, and it is nothing but pure arrogance, and not enough life lessons learned, to continue on that road of no return. Upon a quicker than it should have been rehab, I returned to the teams, and my right knee started to have issues, including buckling and causing me to fall upon my face.

It took awhile to admit "I have a problem." In fact, until my tendon was lowered and cut in half, and I walked around on crutches for a good period of time, and with a reminding limp, even then I thought, "I can do this." That was not the case, and while I was eventually able to return to walking long distances, and going for some jogs, it wasn't until recently that I've been able to return to "Act II" I am not going to break any records, nor be anywhere near the front of the pack. Yet that is okay, as whether going out for a quick 5k or a half marathon, it is not the speed nor the distance that matter. There are good runs and bad ones, but I'd rather have a terrible run, than a good day of work. Its strange putting that quote, to use instead of fishing.

Jan 23rd 2012 was the beginning of Act II, as I walked into a Pacers Running Store, with a purchase of Nike Free's. Due to a warm winter I started with 1 mile jogs, and was getting frustrated, by slow times. Yet, I noticed no pain, and only on a couple of occasions has there been swelling. Its amazing what a few years of age do for you, as when there's some discomfort, I simply stop and take a couple of days off. That used to never be the case, and the person who said "older runners are better," was succinctly correct in their assessment. With a change of nutrition, I have lost close to forty pounds, and now am on a new phase with running being added with putting on muscle lost. The diet part was the hardest, as giving up fried foods, soda, and ice cream have made me want to "firmly plant my running shoes in someone's mouth." Yes, there is still some bitterness.

Yet I have noticed a change, as one of my old professor's was right, when he said it was important to focus on "mind, body, and spirit." I am not as quick to get mad, although of course that happens from to time. There's still some needed aggression at the ready when it matters, although I do apologize to that hurdle at Fairfax High School's Track that I ran into. Some things do change, and that hurdle is going to be on the disabled list for quite some time. My bad. The past few years have been painful, yet there is hope, whether crossing that corner of the track or that hill that seemed so daunting a few weeks prior. The physical and mental improvements have been appreciated, but the spiritual ones have been the most revealing.

I firmly believe that each of us, has this etched into our souls. It does not require running, but rather partaking in an activity that is a passion. Each person has one, or two, or more. It could be walking, swimming, or whatever put a smile on your face. Even with the tears and great sadness of the past few years, I feel closer to God when out on those runs. Whether the Ipod is playing music or I run without it, I sometimes just look up at the sky, and am very thankful for this second chance. It has provided much needed peace. True I'm not going to win a race against those beanpole 18 year olds, who are competing for the Olympics and Scholarships. Yet I am going to go out on every run, whether its a practice or an organized event, and give every ounce of my heart with each time my feet hit the pavement.

Wednesday, July 4, 2012

As the Fireworks Boom, Our Children's Seats in Heaven

Today the USA turned 236 years old, and as per the tradition, parades, hotdogs, beer, and fireworks were in abundance. We just sat out and lit some off, watched the ones from our town, and I sat back with a cigar looking up at the sky. I looked back at my son's younger brother, and thought, "gosh, does he look like him." Tommy is in Heaven, and its hard to believe that my wife and I, were at the Nation's Capital Fireworks show twelve years ago. The Fourth of July was Tommy's favorite holiday after Christmas, as there was no paper from presents to tear apart, but he used to smile, grin, and flap his arms with enthusiasm when the fireworks went off. While his younger brother was far more serious tonight, kind of watching with trepidation, it brought back some good memories while puffing away on that Rocky Patel. There our whole family was, with Tommy's teacher nonetheless, watching the fireworks.

Tonight, there are two families in the Angelman family, who've recently been in the same position, as we were in 2009. I cannot promise you that life will be peaches and cream, but even as spirits are crushed, they can be rebuilt into something new. Consider it like a butterfly in some regards, because while you are going through such pain that even the term "heavy heart" isn't strong enough, your lives will coccoon into something that you'll see. There are signs all around us, of a loving God, and rest comfortably knowing that our children, while they are far away in Heaven, are close in our hearts and with the ultimate provider.  May you run into a Brother Bill, or someone along the way, that shows you the signs that there is a reason for everything, no matter how painful.

There will be tears on this journey. You will feel sadness that shakes the very essence of your souls, and there will be anger, and a whole host of emotions, that will slap you around like a bolt of lightning. Yet, there will also be comfort. There shall be peace. The waters of grief shall part, and while they will always be a part of your life, they will help you see your existence in ways never thought of before. Tonight our children have the best view of the fireworks. "The Boy Who Came Back from Heaven," describes the front row seats up there, and our children are healthy, happy, and vibrant. While we must share tears, we at the same time, have an obligation to honor our children's memories. They are forever a part of our lives, until the day we go to see them again. Just like the founding father's of the USA gave up a lot, we have no doubt paid a lot in emotional turmoil that no one should have to go through. Yet carry on we must, because just like those fireworks, the best is yet to come.