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.

Thursday, June 28, 2012

You're Dead but the World Keeps Spinning: The Eels and Loss

The Eels are perhaps one of the strangest bands out there. They make Coldplay and Radiohead on their most oddball songs, seem quite normal by contrast, and for that reason alone I have to say that I admire them. They are the furthest thing from a "cookie cutter band," and their cover of Prince's "I Could Never Take the Place of your Man," in acoustic is great, as is "Novacaine for the Soul." Yet "The Last Stop in this Town" is my favorite. This song has provided peace, although I'm still trying to figure out, why the lead singer is speaking to a carrot that's cut out to have a mouth in the video.

I hope that the Eels if they somehow stumble upon this, or one of their friends, will realize from the heart, that I made a mistake last week. This song is often in my Ipod, and I just figured out that I lifted "The World's Still Spinning," to describe the pain of losing a child, to others who've just found themselves in this position. I hope they do not mind, as it was meant to provide comfort, and nothing more than that. If they want to sue me, I'm worth about fifty cents and a couple of wooden nickels. Oh, there's lint in the pocket that might be vintage 1993, but other than this, the old thing I have of this age is some baseball cards from back in the day.

Are you have a bad day? We all do from time to time. For those of us who have lost a child, prior to our own passing, it seems as if the cruelest form of punishment imaginable. It is in many regards. I can't in the depths of depravity, of what I have seen with my eyes in positions that have tested my faith and the very essence of my soul, even begin to explain what it is like. It is a nightmare, and two families in the Angelman Syndrome Family went through this tragedy in the past week. Our hearts all go out to them, as while there is sadness, at the same time there has been an outpouring of love and support. They feel these prayers I am sure, even as tears as moments of soul searching and sleepless nights, are part of their lives for the moment. There's no end time for this to occur, as each person handles the loss of a child differently, and that's okay, provided that they do not physically harm themselves or others.

To the Angelman Families across the world, thank you for being there for two of our brood, whom in the past week have experienced the pain of thousands of knives to their souls. Through the tears may they feel our support, and may it continue always, down whatever path or form that it takes. I'd like to thank the Eels too. They are often popular at college campuses, and have provided comfort not only in times of pain, as this song is about the singer's sister ending her life. The lyrics are powerful, and a reminder of what was, and what still is. That is more questions to be answered than known, along with a wish for clouds of hurting ,to fly away into the Heavens. I am profoundly thankful for this song, as its not only a companion for jogs and walks that are spiritual in nature, but its a reminder that each day is a blessing to be valued. As for the carrot, I'm still trying to "get that."

You're dead but the world keeps spinning
Take a spin through the world you left
It's getting dark a little too early
Are you missing the dearly bereft?

Taking flight and you could be
Here tomorrow
Taking flight, well, you could get
Here tonight

I'm gonna fly on down for the
Last stop to this town
I'm gonna fly on down then fly away
Well, alright

Get down

Taking a spin through the neighborhood
The neighbors scream
Whatchya talkin' bout?
'cause they don't know how to
Let you in
And i can't let you out

What if i was not your only friend
In this world
Can you take me where you're going
If you're never coming back

I'm gonna fly on down for the
Last stop to this town
I'm gonna fly on down
Then fly away on my way

Get down

Why don't we take a ride
Away up high
Through the neighborhood
Up over the billboards and the factories
And smoke

I'm gonna fly on down for the
Last stop to this town
I'm gonna fly on down
Then fly away on my way
Fly away

Get down

Saturday, June 23, 2012

The Angelman Family: Around the World, Heavy Hearts

I sit here in shock. Alongside so many other folks, I do not have an explanation, to why two angels have gained their wings this week. There is a time for eloquence. I'm afraid that is not in the cards tonight. To think that two children with AS are gone, their parents hearts ripped apart like that, leaves more questions than answers. People including these parents, have every right to a handful of emotions. I am angry. I am sad. I am frustrated. Most of all, I am devastated for these families.

I used to think I could save angel's lives. That was a mere delusion. I'm not a doctor, not a man with a PHD, and have graduated more from the School of Hard Knocks than any degrees and certificates I've picked up along the way. I wish I could wave a wand, and make seizures, accidents, and other issues related to AS stop so many families from crying tonight. Yet I cannot. Its beyond my control. I do not know the particulars yet, but I do know that there's a family crying their eyes out. There are people with children whom have Angelman Syndrome, who they love so much, that they would die for them if they could to have a better life.

These are the toughest of times. This is when we must band together, and support these families, and each other. Has there been times of arguments and disagreements? Sure. That happens in families. Yet whether you support the ASF, FAST, or both, we must continue to support them. Its better to have two rounds in the chamber against Angelman Syndrome, which these organizations and their researchers are doing right now. They are equally saddened and frustrated. As I wrote a few days ago, researchers are intense, driven, unbelievably bright individuals. Yet they are human, and I am sure they are crying along side us.

There will be no picture here. None is needed. The emptiness of that spot best represents what is felt right now. Two angels gone this week. To parents, grandparents, and siblings of angels, I hope you hug them even tighter tonight. There is nothing I can promise you. There is so much out of our control. Yet what we can do is band together, and support each other through this tragic period, and show these families that we love them. Today. Tomorrow. Always. Each day is a blessing. We don't know when it will be our last. Angels are champions in every regard. Its up for us and them to get it done. Tears and heavy hearts yes. But resolve, most definately.

To a Family in Maine, Nothing but Love

"I was born in a small town, taught to love Jesus in a small town." John Cougar Mellencamp. This past week that song's been played a few times on my ipod, when out jogging, and it is a reminder of what my life was like, before the area I grew up in became one of the most congested areas in the country. Today there's a small town in Maine, that no doubt is mourning alongside one of their families, who's gone through what could only be described as a parent, grandparents, and siblings worst nightmare. I pray that the town rallies around this family, along with sharing some hospitality to them, as they are today going to experience another pain in this path. Burying a loved one, especially a precious child, is the worst thing anyone has to do.

This past week there have been messages of support to this family on facebook, a host of folks around the world donated to a fund to help out during this worst of times, which shows that wherever we are, "that born in a small town applies to everyone." A group of fellow family members stepped up big time, and showed remarkable compassion, which is what life is about. We do not know what day we will be called home, but each and every day is to be cherished. Each one is a blessing, and every breath, every step, must be treated as such. May this family's faith keep them strong, provide sustenance in the coming years, and one day help them realize what Dr. Elizabeth Kubler Ross did. Her quote says it all. That is, “The most beautiful people we have known are those who have known defeat, known suffering, known struggle, known loss, and have found their way out of the depths. These persons have an appreciation, a sensitivity and an understanding of life that fills them with compassions, gentleness, and a deep loving concern. Beautiful people do not just happen.”

She is with our Lord, she was called home. Yet her legacy lives on, and truer words were never spoken. I cannot promise this family that they are going to be happy one day, and that their life is going to be a Disney type of existence. Yet I can promise them, that if they get through this together as a family, not over of course, that they shall per Dr. Kubler, see life in a completely different spectrum. They will handle life as never before, and there will be tears, there will be months of "why's," and that is completely normal. That and emotions from anger, to fear, guilt, and profound sadness, they are going to be all over the place. Forever until called home.

Today, as you go through the burial of such a beautiful young lady, know you are never alone ever. You are walking in footsteps, that you never dreamed of. Yet, there are footsteps in the sand, and there is no timeline on grief. Do whatever you have to do, provided that it does not harm yourselves or others, and may the good folks in the small town of Lowell, keep this family in their prayers. I have no doubt that they shall support them with a lunch or dinner here, and times to just be with each other. They are going to need that for sure, and one day, will see how correct Dr. Kubler is. Yes, you will carry these emotions forever, but at the same time, rest assured that your girl is in Heaven, a true angel who gained her wings, and she is with our loving Father, who I used to be angry at, but now am no longer. I feel that He understands, having thrown down a cataclysmic earthquake as his Son was on that cross. "The crosses we bear." Oh, that is so true, yet carry on, and while you have tears in your eyes, and unspeakable pain in your heart of hearts, know people around the world are praying for you, and that with God and your folks around the world, which is "a small town", you are never alone.

Wednesday, June 20, 2012

Bethlehem Lutheran Church in Annandale, VA: Welcome Home

There are books such as "You Don't Want to Go to Church Anymore?", that have gained popularity over the years. This is because for a variety of reasons, the number of folks going to Churches and other places of worship have dropped substantially. It is not only in the United States, but rather an international phenomenon, as a recent poll showed that the amount of folks believing in a higher power among twenty somethings has dwindled from 83 to 68%. A lot of churches have an older contingent, a handful of those in their 30-50's, and almost no youth to be seen. As a simple man who has visited several congregations in a variety of roles, and from what Pastors have told me, there's no denying that this seems to be a common trend.

This past year I recently found a church that is home. That would be Bethlehem Lutheran Church in Annandale, Virginia. Its by no means a mega church, as there are only a few hundred people, but these are good folks who welcomed my family with open arms. "Come as You are," is exactly how it feels, and as soon as I met Pastor Gerry, I knew that I found someone I could trust. He has an ability to make church nonjudgmental, but at the same time, leave you with lessons of faith and life, that have a bearing on which direction you are going in. There are two worship services, for the early risers 8:30 a.m, and I tend to go to the 11 a.m. one, although I am looking forward to Wiggles. This is a church service for young children, where you are not allowed to shush them, but to allow them to experience a presentation just for them.

It has been an honor, to have met so many caring folks, and also to have learned so much from them. I cannot begin to explain how beautiful the services are. They are about an hour in length, but they are so peaceful, with the stained glass windows, Pastor Gerry's message, and music that I find to provide momentary bliss from the stresses of life in the big city. The focus of this church is Jesus Christ, and loving our neighbors. There have been tears, smiles, and laughter here, and the passion, I can just feel it in the air. Its electrifying, and a complete recharging of the batteries. At the same time, I am impressed by the church's ability to welcome new members. I was intimidated at first, just like anyone is, during that first service. Yet a kind man named Tim, who's family I love, brought me up front with his brood, and made me feel comfortable right away. If you are in the Northern Virginia area, I am more than happy to recommend Bethlehem Lutheran Church. For more information, feel free to visit

Tuesday, June 19, 2012

Facebook, Special Needs, and Inclusion

Facebook has greatly enhanced the awareness and knowledge, of conditions such as Angelman Syndrome, CDKL5, Fragile X, Rett Syndrome, and a host of others that were relatively unknown. I am very thankful for this site, as it has also been able to raise funds for charities that operate on behalf of these causes, along with facilitating communication between parents and families across the world, for which facebook really is a "lifeline and resource" rolled up into one. Yet facebook does lead to some issues, and those would include cyberbullying and writing posts, but not having the guts to be held accountable for them. I have been guilty of arguing with folks on Facebook, and not displaying the best words, along with dropping a person out of a group that didn't deserve it. I have apologized, not only because it was the right thing to do, but simply put its about being a responsible adult.

There is definately a "facebook disconnect." For whatever reason, its even more quick than a fast, hastily written email, that is written later. At the same time, there are people who like to get together to just slam someone, or rip apart families who have similar conditions, instead of supporting them at their time of need. Instead of displaying sociopathic tendencies, wouldn't it be better to lift them up? Just like in real life there are cliques, and that's fine, but here's the bottom line. You can defriend someone, nothing wrong with that at all. Yet to block another member of your family, whether its Angelman or Rett Syndrome or any other condition, makes you and others blind to situations that could be helpful, or provide comfort. Keep your message box open, as you never know when someone might need your help, or you may be in a position of need. There are simply not enough people in our families, to be constantly bickering, and losing our eyes on the prize.

Its a way to lose support for whatever charity you support, and in the fight against any medical condition, its always better to have two bullets rather than one. You can support one or the other, but I like to think that two methods of attack make more sense. If you look at historical precedent, all medical discoveries and inventions have been conducted in such a manner. It was an honor to meet researchers at the Epilepsy Foundation Walk this past year. They aren't guys and gals that I'd probably kick beers back and smoke cigars with, because, they are smarter than I am by a million times, and we have different interests. That's cool. Yet, looking in their eyes, we do share a competitive spirit, although to their credit, I think they get the edge on that one too. Very impressive.

Constantly writing posts, deleting them, denying them, or refusing to put your money where your mouth is, or getting groups of people to slam one person, is cowardly. In the "real world" its "incitement by mob." I am glad the "real world," is a much better place than the Facebook one, even though that site and others do serve a purpose as mentioned previously. I am not angry at anyone I've sparred with ever, and in lieu of events that I've seen this week, I'm not either, even though I felt there were more than a few statements of poor taste. Disappointed would be the best word. Just like in the real world, we don't have to hang out with each other and be all "buddy buddy," but by God, we must always keep our eyes and ears open to what our neighbors are going through, no matter what land or background encompass us.

Saturday, June 16, 2012

Hands Off of The Steering Wheel

All of us are control freaks, in one form or the other. While we all know plenty of people, who just seem content to go "wherever the river in life takes them," the bottom line is in one shape or form, they are aggressively trying to tread water. There are pieces here that I can discuss openly, there are some that out of respect to regulations or mandated laws that I can generalize, and some others that aren't going to make it here. As many of you know, I am an aggressive individual, and wish that I could knock down seizures with a few .45 rounds with no impunity. I have no mercy for them. Yet it is sadly not that simple, and it has taken a long time, to simply admit that there are things beyond my control as a man who's often able to protect others, but just like everyone else is human. "Hands off of the Steering Wheel" is a difficult task, and these are a few examples of how, we are not in control of life, no matter how much we have our stuff together.

A well prepared team went into a routine training mission. This event was only to last an hour or two, and it was "time to hit the showers." That's right, a day of kicking back, chilling, and doing whatever was desired later that day. A young man died that day. In his mid twenties and in the prime of his life. Gone. A man was flying his helicopter over a hostile territory, cleared the area, when shrapnel came flying in. His co-pilot's lungs were punctured with bullets, and this pilot was somehow able to bring the Cobra back into base, barely alive and with marks that were not only on his body, but with him still to this day. He carries more internal scars than the ones that show on him, and still feels guilty that his best friend who was manning the controls with him that day, are gone. A young police officer in another country, saw a grenade tossed in a subway. Without hesitation, this man full of vibrancy and compassion for life and his family and friends, jumped upon it. His death saved everyone else. He was only a few hours before getting off of work, and his is 10-7 for the remainder.

A man in his fifties was found in his work truck unresponsive. He had been plodding all day, enjoying the summer breeze. CPR was unable to revive him, as the AED detected no pulse. A father's sadness about his son's passing continues as he died on the gridiron, practicing football, a game that he had played since he could walk. A couple was gunned down as they went on their evening walk. The woman enjoying a day off on a hike, was run over by a bicyclist, who forever has to realize that his actions caused her to be so missed by her family and friends. A man fixing an electrical component, of which he was fully licensed for, deliver thousands of volts to his body. What should have been a routine fix, was anything but that. A mother discovered her adult son had passed away, as she found him downstairs, getting his socks on ready for work.

These events are all painful. Every single one of them results in death. They are the "lightning bolt" that hit that person, and spread out to affect so many. Family and friends of these people cry to this day, and sadly many people blame themselves, including a kind gentleman who was hit by a drunk driver who lost his life on a motorcycle. These heavy hearts are in our communities, around us every single day. Often there are no signs, with the exception to that rule, often being in someone's eyes. These truly are mirrors to the soul, and each person has to contend with that moment when "they have to take their hands off that steering wheel." It stinks. There's no denying that. Whether you believe in God or don't, there are just these times, that there is no explanation for what happened. It is because of these, that we all should be appreciative of every single moment, every blessing, each moment of bliss that brings us happiness. We never know where our steering wheel will lead us, and while our hands might be on it, we are not in control of so much in life.

Funerals are Important: Whether an Adult or Child

It was so hard to see my son's casket closed. Looking upon his face as that door went down, is something that I will never, ever get over. I'll never forget the first time seeing Tommy, after having left his body in the hospital, and crying so hard when I saw him in that coffin. To see your little one like that, it just hurts so much, there are thousands of bone crushing blows against your soul that tear you apart piece by piece. As I type this with tears in my eyes right now, and out of my free will, it is imperative that everyone understand the importance of a funeral service. Ever since Tommy's passing in 2009, I have been exploring death, and how various cultures handle it. This has included being part of one agency's Crisis Response Team, along with being on call with a private, hospice based group as a volunteer. Death is an uncomfortable topic to many, and I used to be afraid of it, even though the adage of "no one gets out alive," is so true.

There are funeral homes that I trust, who's workers show nothing but compassion. Sure, they are for profit, but they provide a service that helps with the loss of a loved one. It doesn't matter if it is an adult or child, what method of interment, what religion you are part of or not, but funerals are necessary to begin some form of healing. Many of the funeral home folks have told me, "a lot of people, just don't do funerals anymore." To those whom request that, we must honor their wishes, but I cannot stress the importance of this sad event. People that deal with end of life/hospice issues, who are not affiliated with funeral homes, have told me similar statements about how funerals help people not get over, but move on eventually to some sort of peace.

Tommy's funeral was cathartic in many ways. At the time I did not realize it. Seeing so many people who were a part of our lives and or his, I think back to that night in November, and am immensely grateful. We formed a circle, people paid their respects to my son, and while we chose a private burial, I am very thankful to those who showed up, or who were with us in spirit. Looking around the room that night, even though in the throes of pain at the time, I can say without hesitation, I felt love and an understanding at a basic human level, that life would continue on even with it being different. It also helped me to know, that the hardest part was yet to come. I do not know what tomorrow will bring, but I am thankful that his service was so beautiful, and that room was full of family, friends, and teachers and other people, who were a part of his life. His doctor even showed up, which I thought was very classy, and our family is appreciative of all.

Funerals are not cheap. That is why we must not only help a family that's very much in our hearts if we can, but also continue to do so always. A family recently lost their precious angel, and it is imperative that we help them with these final expenses, at a time when they must continue on. I think Tommy's funeral and burial costs were close to $7,000 with everything included. We were very fortunate at the time, and are still blessed. There is also going to be time, that this family needs to be away from work. Their grieving does not EVER end, but they will not be in any position to be anywhere, but with each other, as it should be for those nights of just holding each other and crying.

There is no closure, when you lose a child. Yet there is comfort. The beginning of this, can begin at the funeral home. That is why I ask you, if you can, even a few dollars, to help a family in Maine that has already shown that it would be of great help, to support them at this time. It is not something I am generally comfortable with, but I feel compelled, to speak up and say that to help them during this time, is something you will feel better about later. You will have done your "good turn," as a family weeps and spends time with each other, devastated but united by their love and sadness. I am confident that the kind neighbors in the small town of Lowell, will bring those lunches and dinners by, as I am that people of the Angelman family, will step up for them at their time of greatest sadness. This will be another way to be there for them, and as the years unfold as the months of calendars are flipped, we must always continue to have their backs.

Angelman Syndrome Families Across the World: One of Our Own in Maine

There were many prayers yesterday, thoughts of kindness, along with love shown by the Angelman Family. It is with profound sadness that one of the members of our brood, is going through such soul crushing pain this morning, as their angel gained their wings last night. A beautiful, precious 11 year old girl is in Heaven, while Mom and Dad, grandparents, cousins, siblings, all try to make sense of what doesn't. It is so hard to lose one of your children, its as if you've died a thousand deaths. Even though so many of us have been in this position, you are supposed to outlive your little ones. Yet that is not always the case, and its a painful road that words cannot aptly describe. Yet, even with this heartbreak, this family and its extended one with different names and backgrounds across the globe, should be proud today, even as tears are welling up around all of our eyes.

Yesterday was love personified, as people of so many nations, released pink balloons. These pictures are no doubt comforting to this young lady's family, but all of us who cannot see Heaven, where those balloons ascended with her into God's loving palms. This young lady's family did every single thing they could do, to help their daughter live, and right now they are in, no doubt a place of shock and pure agony. We must be there for them. If we are their next door neighbor, a simple act of kindness can go a long way. As for all of us around the world, I cannot stress enough, the importance of a heartfelt prayer directed their way, will go. They will feel it, I promise you that. Sending them a message of love, whether it be on their facebook walls, or a card, can help with their pain, and all that matters is that you show them that you care. If you can, by all means help with funeral expenses.

The past week has been sad. An answer that all of us were looking for, was not provided, for reasons unknown. That is frustrating, and whether you are a believer or not, that is alright, because there is more in this life that we don't know than we do. There are going to be tears to come, but yesterday as a simple man who lost his son to an Angelman Syndrome seizure, I let go of the anger that I felt when hearing about this young lady being in a coma. Yes I prayed for her, and am devastated for her family. Yet at the same time, I'm more than impressed, very proud this morning, having witnessed not only their love, but the love of folks from across the world as an angel flew above the clouds. We live on a planet that often forgets what really matters, being there for each other, but this morning starts anew. May this spirit of kindness, and pink balloons live on, not only for this young angel in Heaven, but all whom inhabit the Earth.

Tuesday, June 12, 2012

Every Day is a Blessing, Remember the Maine

"And now I'm glad I didn't know
The way it all would end the way it all would go
Our lives are better left to chance
I could have missed the pain
But I'd of had to miss the dance"

Garth Brooks "The Dance" is a song that strikes so many of us, including those of us who have endured a tragedy. All of us in our lives, are going to face a moment, of such crushing pain, that we are going to question our faith, the very essence of our being. Tonight we all pray for a young girl with Angelman Syndrome, and her entire family, because simply put, they might have different last names or backgrounds, but we are very much related. Long after pangea, the land bridge, and even the hails of "Remember the Maine" that marked the start of the Spanish American War, we are still blood relatives. Each of us are at a minimum 1/32nds related to each other. Right now one of our family members is in an uncertain predicament, as she is in God's hands, as are the rest of us. We never know when that last day will be, but as it is stated so eloquently in the Bible, "Before You were in the Womb, I Knew You."

There are many interpretations to this, and while it has been used for political debates and other arguments, it should actually be of comfort. Even to the most broken hearted right now, there is a family in Lowell, Maine, a small town that is a dot on the map, but tonight that place has light from all over the world shining down upon it with love. From above in the Heavens, to continents across the Earth. In that verse, is written that each day we do have control over certain elements of life, but ultimately it up to our Lord for divine intervention. Its up to God at this point, because all human elements have been given a shot, and while we must continue to pray, we must face the stark reality that one of our fellow family members is going to be taken to Heaven.

My pastor says it so well. He says that when a child precedes you in death, that "you feel robbed." That is true in many regards. Its a simple explanation, but yet, it coincides with the Garth Brooks song "The Dance," that was so popular years ago. You do not want to know necessarily how the end of life or a battle goes, because like a book, knowing the ending would so very much spoil the rest of the story. Even in the midst of tears, pain that tears upon at heart strings, is beauty that can be felt in a spiritual sense at even our darkest of times. There is heartbreak for a family in Maine, around the rest of the United States, and lands far away such as Papua New Guinea and New Zealand.

Right now there is a family that needs our love. For a few moments, we can stop and pray for them, or keep them in our thoughts. They will feel this, I promise you that much. Its beyond comprehension on how to explain it in words, but there's just this visceral at the heart feeling that each and every one is capable of in even the toughest times that life throws our way. Our time on the dance floor or the stage if this is that, may only last for a blink of an eye, even if that is only two, five, ten, or one hundred years. We are just mere pieces of dust in the wind, that are carried in directions that we sometimes can control, but often we just tumble along in whatever way the breeze blows. May this family in Maine tonight know that the world is praying, not only for their daughter, but for them to find peace during this most difficult of times. Nothing but love, and while our lives are better left to chance, what matters is that dance. Life is nothing but a book of photographs and memories. Hold on to those good ones.

Wednesday, June 6, 2012

An Ode to the Space Shuttle Program and Tommy

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

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

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

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

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

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

Sunday, June 3, 2012

SUDEP=50,000 Americans, Broken Hearted Families Worldwide

50,000 Americans die every year from SUDEP. That's right, read that number again. SUDEP is sudden unexplained death in epilepsy. To put it into proper perspective, that would be one hundred fifty plus plane crashes per year of a modern jetliner, such as a Boeing 767 or Airbus A330. In another way, that would be almost a plane going down every single day, and now you have a better understanding, of the total of folks who've lost their lives to this condition. Now multiply that pain, not only a young person or vibrant individual loved by so many, gone before its their time, and all of the cracks of pain inflicted upon families, friends, neighbors, school teachers, and members of communities across the "fruited plains". Thats a lot of tears, a plethora of dreams crushed, and people who have been robbed of their life or that person, whom they love so very much.

When Tommy passed away from this, I felt as if I was alone. Often I still do. It is a lonely road, even with an amazing family that has been very supportive, that I would not recommend walking down upon. It will have you question everything that you have held sacred, and throw that into millions of directions, just like an actual plane crash can heave engine parts miles away from debris. There's no picking up the pieces, there's no answers, although broken wings do heal with time, even as pain upon your heart continues to be with you every single day. So these 50,000 lives every year, there are parents, families, siblings, friends, and so many more that are impacted. Yet only 1/2 of 1% of U.S. medical research goes to epilepsy, even thought it affects way over three million of our fellow citizens. One in ten of us are going to have a seizure in our lifetime, so don't think you can simply just "avoid the invariable lightning bolt, because it is headed in your direction." The storm clouds don't have to be present for this to happen, and while your outlook can be shiny with unbridled optimism, it can be dropped at a moment's notice with a seizure that can greatly affect your health or take your life.

This is by no means a happy post, but it is the reality. Sometimes life isn't pretty, and the results of SUDEP, whether it being my son sitting on a gurney gone, family members and friends devastated, or this story being repeated so many times not only in the U.S., but around the world must stop. Two thirds(66%) of epilepsy cases, there is no known cause. That must decrease in number, along with an increase in preventing the pain of SUDEP, and generating funds for epilepsy research. That's the bottom line, because while "well intentioned awareness campaigns" have helped, there's still a long ways to go. Results are what matter, and it is our moral imperative, to not only fight seizures with a strategy of aggression and purpose simultaneously, but to ultimately find that cure. With the technology of medical robots and other developments unfolding, now is the time. By continuing to wear purple, getting involved in your communities across the world, and helping out organizations like the Epilepsy Foundation and CURE, you can make a difference in so many avenues of attack.