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.

Saturday, January 29, 2011

God Squeezes But Doesn't Choke

"He who learns must suffer. And even in our sleep pain that cannot forget falls drop by drop upon the heart, and in our own despair, against our will, comes wisdom to us by the awful grace of God."

Don't ask me how to pronounce Aeschylus. I just refer to him as "the Greek Guy," and its incredible how this statement of his rings true to a parent who's lost a child. It is a "parent's worst nightmare," because your children are supposed to outlive you. That's the natural order of life, but what happens when that doesn't occur? The best way I can put it into words, is that its a "trainwreck that hits the very essence of your soul, with knives bearing into your heart, that never stops bleeding." Until the day I die, I'm going to grieve the loss of my son Tommy, who passed away from a seizure on November 4th 2009.

Yet I am not alone. Too many parents have been in the same situation, and recently other parents have had to lose their little ones to seizures. The past year plus has been difficult, as there have been days I haven't wanted to get out of bed, and the tears can be brought up in the strangest of ways. It could be a particular place that my son used to play, a song that I heard while driving him home from school, or seeing a child that looks like him. There's no "rhyme or reason," behind these feelings, but my faith has grown stronger. I'm by no means perfect, nor will I ever be, but what I see now is different. This doesn't mean better, but it has led to the discovery that we are capable of so much.

The Greek guy was right. You learn a lot from pain, and its proof that life and death can teach you a lot. There are two choices, and they are simple enough. Either you wallow in misery, or you make the misery go to good use. There are people you meet in life, who provide guidance at a time, that may not make sense right there, but they do at important moments. One of my favorite quotes comes from a man, who had a simple outlook in life, although what he said was brilliant. "If you get kicked off the horse, you will get right back on THAT horse, and ride again." Getting kicked off of a horse is a scary experience, much like seeing your child in a coffin, and its going to leave you paralyzed. Yet you've gotta "get back up on that horse and ride again."

My son is now with God. Through prayer and quiet reflection, I've decided to go with option #2. Its not easy. In fact, there have been good days and bad, but ultimately each person is capable of this. Through tragedy, you can discover what God wants from you. He squeezes, throws us through "trials and tribulations," but He does not choke. It doesn't matter what your faith is, but for Christians, the "crosses we must bear," is a powerful one. Life isn't fair, its a battle of sorts, and you have to decide whether you want to succumb to it, or come out strong. And that alone leads to the efforts to eradicate seizures once and for all.

What can you do? It can be simple. You can help Vanderbilt's Kennedy Center Angelman Seizure project with a donation, or you can let others know about the fantastic work they are doing. There's no denying their dedication, and with the guidance of God and our footwork, we can be part of something special. It is too late for my son. It is too late for far too many parents, who've lost their child or a loved one from a seizure. However, now is the time to "climb out of the trench, reach the summit, and get rid of this menace at once." There's no time to waste, and by reaching out to religious organizations and businesses, along with what we can do individually, I have no doubt that a cure for seizures will be discovered. Then we can all sit back and breathe a "sigh of relief," but until then we must fight with determination and pure grit.

Saturday, January 22, 2011

I Have a Dream About Seizures Being Cured

Children are so brutally honest, that sometimes what they say or do, can just make you laugh hysterically if you are having a "rough day."  This past Thursday was challenging enough, as there were quite a few pressing issues at work, and like a lot of folks can relate, I was just a "bit down."  We've all had those days, and while thankfully they are generally fewer in number than the good days, they can be a source of frustration. With slumped shoulders, a bit of slowness in my gait, I was walking inside of a school. There were small posters made, where Dr. Martin Luther King's famous "I have a Dream" was quoted, with what each particular youth wanted to write. These were all over the wall, and in a cascade of colors, making them impossible to miss.

A lot of the children wished for 'world peace' and 'everybody is kind to others.' That would be quite an accomplishment, if it is possible, but always seems far out of reach. Others had written about "energy sources that don't pollute", or "all pets have a place to call home." These were all fine, but two of them particularly stood out. The first one was "that lunch was served earlier than 12:30," and the other was "the school needs pandas due to it being so boring here." You have got to love this honesty, because they wrote what was on their minds, and the first one was potentially feasible. The second one, unfortunately due to pandas being rare, and also not as docile as they are beautiful, probably won't be occurring unless you get bad grades.

This level of "telling like it is", made me laugh. It also reminded me of a story involving Gandhi. A mother brought her child from a far distance, to see this fine man for advice. Her daughter was eating too much sugar, and so they visited this inspirational leader. His advice? "See me in two weeks." The lady was angry, but walked away with her daughter, back to their village a long distance away. Two weeks later, they returned, and Gandhi's advice to the young girl was 'don't eat sugar.' The incredulous woman, irate, yelled at Gandhi saying "That's all you can say!" Gandhi said "Two weeks ago I was eating sugar."

Honesty spoken plainly by an adult. While the dream of not eating sugar is one that I have, I do have one that could be completed after Dr. King's famous speech. That is for seizures to be cured. It is a reasonable one, as the folks at Vanderbilt University and other institutions, have made developments that were impossible now a reality. They are so close, just on the cusp of making history, and in our lifetimes this discovery will be made. I know it in my heart, as I have prayed on it, and know that its going to happen. For some, this great news will come late, as it has for my son who lost his life due to them. It is too late for those who've also died from them, which is more common than we'd like to admit. Those who are fighting them right now, they need this discovery to be made, and if you don't think it is reasonable, look at the life of one Abraham Lincoln.

Other than a bad night at Ford's Theatre, his life is a model for those who say "seizures can't be cured." He went through bouts of chronic depression, lost so many elections that you'd need more than fingers and toes to count them, and yet became President of the United States. Still think curing seizures is nothing but an "idealistic musing?"  How about the General surrounded by Germans, helplessly outnumbered in WWII, who's response to surrender was simply "nuts!". That's honesty in the line of fire, and while thankfully there are no howitzers firing at me from each direction, I know that a cure for seizures is going to happen. It hasn't been easy, nor will it be. Yet nothing good ever comes from "easy". There won't be pandas in that school before a cure for seizures is found, that is for sure. The earlier lunch period might happen, but in our lifetime, with hard work and the dedication of folks at Vanderbilt, it will not be a dream but a reality.

Tuesday, January 18, 2011

Vanderbilt University Kennedy's Center-Stop Seizures Now (Please Help)

"Rise up, this matter is in your hands. We will support you, so take courage and do it." Ezra 10:4

We are all not going to be doctors, lawyers, or people who make millions of dollars a year. That's okay, because God gives us the tools that we need, to find a level of satisfaction, and to help others that have the talents to make discoveries. While trudging through life in a uniform, instead of being that cigar or beer taster that I've always dreamed about, I have to admit to a lot of imperfections. No matter whether you have loads of money in your savings account, or whether you have mere pennies, none of us is perfect. Yet I am blessed and consider myself to be fortunate. Yes, I had to face the tribulation of burying my child Tommy, who passed away at age five due to seizures related to his Angelman Syndrome condition. Yet there are others who've been in the same boat, and you have two choices. Either give in and wallow in misery, or fight on and make a stand despite the pain. The second option is the correct one, and I hope this post will enlighten folks to understand why Vanderbilt University's Kennedy Center Angelman Syndrome program is so important.

The Vanderbilt Kennedy Center is staffed with phenomenal people, who have already had a lot of successes with the seizure issues involving people who have Angelman Syndrome(deletion of Chromosome 15). Too many people with Angelman Syndrome have suffered long hospitalizations, delays in their development, their quality of life, or their life itself for the status quo to be considered acceptable. Vanderbilt University and the Kennedy Center are making strides daily, in the fight against these dreadful seizures. Their research team deserves both our thanks and respect, for what they do, as they are passionate about getting seizures cured. They are our best hope, and while we aren't there yet, there will be bumps along the road, this team is going to make the groundbreaking discovery that's going to have an amazing effect on so many people.

Right now, here is what's going on at Vanderbilt University, and this should just be considered the "tip of the iceberg." Their work on Angelman Syndrome may hold the keys to help all with seizures, and they are "burning the midnight oil" with dedication and a lot of coffee. Let's help them get what they need, and that is funding. Yes, money. This is what they need to further their projects, and if you wonder why should I send them $5, $10, or even more if possible, consider the merits of their work.  Its impressive, as they have several teams working on the Angleman Syndrome seizure problem, including one group that's focus is EEG's, and how to detect and stop the seizures effectively with this tool.

Another group is working on sleep patterns. Angels don't sleep much, and is this what causes more seizure activity, or is the lack of sleep due to the electrical brain patterns being abnormal?  One group is looking at Angels brains through MRI imagery, to determine if the wiring is causing the seizures, and what might work to prevent them from occuring in the first place. A particular fascinating study involves mice, which have the deletion of an Angelman patient. A team is working with them to figure out how certain medications can stop seizures from happening. Their success rate is astounding. Anesthesia is a constant concern for parents of Angels and these folks alike. A group in this foundation is looking at that, because until there's a cure, its a fairly regular occurence to use medically induced comas, to stop seizures. This could decrease complications, and ultimately result in quicker recovery times.

Yet the group of this Vanderbilt program that really has opened my eyes, is the Stem Cell aspect. Here researchers are actually taking stem cells from "Angels" skin, and checking the cells to understand them better. This will give medical professionals a better understanding of an angel's basic body functions, and how treatments geared to these cells that are different, could allow treatments to stop seizures. Totally incredible, that this research is being done with love and dedication from the folks at Vanderbilt. We need to get behind them, through our congregations and corporate contacts, as well as individual donations. If you would like to help them find the cure, you can go online and be a part of this effort at Wouldn't you like to be a part of something so special? When a cure is found, which it will be, you can be what Tony Dungy talked about in his book "Quiet Faith." That is, your life can be of significance to someone else, which is the most important aspect of our being.

It is too late for my son, and other angels who have passed away from seizures. Yet, we must stop another family from going through a similar heartbreak. I'm not angry with God, as I know He's protecting my son, and the other angels who've left their loved ones far too early. There has been a lot of agonizing and prayers, with the end result being to help Vanderbilt University strike these seizures down. Has there been a burning bush or booming voice at my doorstep? Nope, and I'm thankful for that, because I'd have even less hair and higher blood pressure than I already do have. Yet, its been through the love and compassion of so many, that the answer was as clear as anything else in life has ever been. Vanderbilt's researchers have God given talents to find the cure, but they need foot soldiers to generate funding to get the job done. If that isn't a project that's worthy of our faith, full hearts, and dedication, then I don't know what is. Please help them continue to make the strides they have already accomplished, and propel them to the glory that we all can share in. God bless them, and if you can help them with even a small donation, these do add up, and will ultimately allow us to be a part of a victory that does matter.

Monday, January 17, 2011

Medicine is a Temporary Stop Gap-Let's Cure Seizures Now!

While my son's passing due to seizures might be labeled a "rare occurence," it happens more often than any of us would like to admit. Yes, reliable statistics show that most folks who have seizures, will ultimately not be taken to their graves because of them. Yet, that wasn't the case with Tommy, nor other children who have seizure disorders. Those statistics "pale in comparison," when you factor in a parent's grief of seeing their child's lifeless body, and the knife to the soul that those who loved that little one have to go through. Take those statistics, and throw them out the window, with the wind pulling them in an oblivion where they no longer matter. Our children do, and people who have seizure disorders are suffering. Medical advances have been made, and certain prescription drugs have stopped people from losing their lives far too early, or from being affected by seizures on a hourly basis.

Unfortunately, a cure hasn't been discovered...yet. Through Vanderbilt University and others, I believe it will be. While grateful that medicines do help, they are no means the "end all" that we are all looking for. If seizures haven't directly affected you, then put yourself into the shoes of a parent whose child is seizing. You are now with your cherished daughter or son, and watching them convulse, turning different shades of color, and seeing them just thrash around with no idea of what's going on. It is a powerless feeling, and while we cannot be in control of everything in life, it hurts you to the core to see your blood going through such an ordeal. You might be able to stop them via medicine, either by placing a pill on their cheek, or having to resort to rectally inserting valium to get these seizures under control. Is that a cure, or good enough? Absolutely not!

So if you are able to bring your child's seizures "under control", what happens to them? They are knocked out for long periods of time, and any developmental milestones that they may have achieved through years of hard work, are lost forever. That child is going to be miserable, and there's nothing you can do, even with these medicines, to put that smile back on their face. School days are going to be missed, you are going to be forced to put your ability to bring food to the table on hold, and life is going to be hanging in the balance. Right now, as these words are typed, some people with seizures are in medically induced coma's. That's right, children. A precious gift from God, who's knocked out, just to somehow get the seizures stopped.

See how the words "under control" have been used often? That's for good reason, because "under control" is simply not good enough. Several angelman children, in addition to Tommy, have had their lives taken away from them due to this menace. Others have had to learn how to walk again, or just have a smile on their face, and some enjoyment of life. Many will spend long periods of time in the hospital, and how is that a positive experience for a child, or their parents who worry so much that their health is affected as well? Its 2011 folks, and while some medicine therapies have made seizures not as necessarily dangerous as they would be without them, this is not the cure that is desperately needed.

We need to pray for a cure. Its a two part deal, as our faith is important in this matter. At the same time, we are required to take action, instead of sitting on the sidelines, and wishing for a cure for these seizures. I'm just a regular, simple guy, but I'll be damned if I just "rest on my laurels and wishing." Burgess Meredith's quote from "Grumpy Old Men" is quite appropriate for a cure involving seizures. "You can wish in one hand, and crap in the other, and see which one gets filled first." That is certainly crude, but the truth isn't always pretty. Until seizures are cured, we need to get with our congregations and businesses, and unite with each other to find this discovery that is just around the corner. It doesn't matter who you are, or what you do in life. While doctors and their God given gifts are ultimately going to be the one that do find the cure, they cannot do it without foot soldiers, who have the faith and foot leather to get them what they need.

Simply put, that is both awareness and money. The economy "isn't what it used to be," but we all can make a donation to Vanderbilt University's Kennedy Center "Angelman Seizure Project." Even if you can only spare a 'five spot', that will add up if we pool our resources together. If you feel that this is a righteous cause, which I believe strongly that it is, ask your pastors and religious leaders how they can help. You'd be surprised by how quickly, people will want to get behind you, in this particular mission. While there are a lot of causes and problems in the world, if this one isn't noble, then I honestly don't know what is. So I'm asking you, not forcing you, to please to join me in going to groups that can be of assistance in this battle. That's what it is, a battle. And in this campaign, we must come out on top, and allow for nothing short of victory.

Friday, January 14, 2011

Princeton University Student Dies From Seizures

The sports section is usually looked at, to learn about how a particular team is doing, or what the free agency market looks like. Its usually loaded with a plethora of rumors, of trades that may occur, and the musings of pundits who are all knowing "experts of sports," that write down their opinions. Today's Washington Post was a somber one, and my heart just breaks looking at the picture of Khristin Kyllo. A beautiful young woman, who played softball at nearby Madison High School, was at Princeton fulfilling her dreams on the field and in academics. Khristin passed away yesterday, in her dorm room of a seizure. Eighteen years old. In the prime of her life. And now she is gone, with her parents, family, friends, classmates, and teammates mourning.

One particular comment stood out. One of her teammates, summed it up, by saying "She made me a better person, and pushed me in every way possible." This young lady had been suffering from seizures, that robbed her of short term memory, which made routine activities difficult. Yet she excelled on the field, and in the game of life. Even with the challenges that these seizures created, which was formidable, she was able to go to an Ivy League School. What a brave, courageous young woman, who influenced others in positive ways.

This is where legacy comes into play, and we should all pray for her loved ones, while remembering her for her successes on and off the field. I wish I could have met this young woman, who didn't know the concept of "giving up," but rather "fighting." That's what everyone needs to do, is "fight." We need to fight, push ourselves to our physical limits, to finding a cure for seizures. The Vanderbilt University Kennedy Center's work with seizures is the best chance, and while a lot of their focus in on Angelman Syndrome, their developments in this field, could help a lot of people with regards to this menace. Today is a time to reflect the sad passing of a young woman, who had the heart of a champion, and went to God far too early. Yet it should also be a "battle cry" of sorts, that's full of love and determination, to make sure something like this never, ever happens again.

Tuesday, January 11, 2011

How to Handle Folks Who've Lost a Child

It can cause discomfort for someone to deal with a person, who's had a child die. I've dealt with this firsthand, as a lot of people would avoid me, and no offense is taken. Some later came by to tell me "I just didn't know what to say." Its understandable, as parents are supposed to outlive their children, with that being the "natural order." Yet when a child dies, that 'balance' gets thrown out the window. Children are going to pass away, just are adults, as we all will one day. "Our time is going to come," whether we like it or not.

Death is discussed in hushed tones. Some may like that, but I don't. In fact, if someone out there has a question about the passing of my son, or about the subject, feel free to email me. You cannot upset me, because there have already been more than enough tears to fill up several bathtubs, and I'm not afraid to discuss any aspect. Am I an expert on death? Nope. Am I a perfect person? Hardly. Yet I have held my dead child's hands, and while that is not a blessing by any means, it offers a new perspective of sorts about a loss of this magnitude.

What happens if a family member or friend of yours, loses a child? I pray this is hypothetical, because no one should have to go through such trials and tribulations, but it is inevitable. How should you react, and what should you say to them? Everyone handles such pain differently. I've had people smile when talking about it. They don't mean to smile in a happy sense, its just a reaction that what they are hearing, is too much for them to contend with. You can be a branch of support for a person that loses a child, its a capability that all of us have, and that is compassion. Tears aren't required, but what is necessary, is love. When you are talking to this person, it is imperative that you tell them how sorry you are, and that you will be there for them, while following up on that. Hugs mean more than words can say, and if you are speechless, by all means hold that person in their time of pain. A shoulder to cry upon, is more helpful than any words that can be written here or anywhere for that matter.

Expect your family member or friend, to go through unexplainable motions. No one person is going to react to such a tragedy in the same fashion. Remember, each of us handle a crisis differently. For a long time after Tommy's passing, I actually just wanted to be left alone, and went through a period of anger, that ultimately led to weight gain and some rather sharp displays of innapropriate emotion. Give a person in grief some space, but at the same time, you can convey messages of support through the ever expensive and slow snail mail method, or via email or text messages. Facebook and other forms of communication were how I was able to discuss with others my pain for awhile, as a phone call would have just been too painful. Some may like that phone call, but it makes sense to first send out an email or text, to see if that person is ready to talk to you or meet with you in person. Don't be offended if you write, and that person in grief doesn't get back to you either. More than likely your kind message has been received, appreciated, and that alone is important. You've contributed a valuable resource-love. It will be returned one day, when that person is ready for it.

What about "things not to do?" A couple days after Tommy passed away, a person who will go unnamed, called on behalf of let's call it "an organization." This lady asked if "Tommy had expired." This was a knife in my heart, and I honestly don't know how I didn't just blow up and scream at her. Somehow, by the grace of God, I was able to mumble with sadness, that he had "indeed passed away." She seemed to have gotten the message, and apologized. A child's life never "expires," even if that is the medical terminology for such an event. Political correctness is generally to be avoided, but that is just one word, that can cut right into the very soul of a person in the shocking reality of losing their little one. Don't say "Well, I'm so glad you have other children," or "you can always have more children." A child can never, ever be replaced, and person who's lost one of their own flesh and blood will never get over it. They shall get through it, but never over it, and you can't replace a child. They weren't a television or a alarm clock, they were a living, breathing soul that was cherished in that parent's life.

See how the list of things to "do and say" is much bigger than the "dont's?" There is a reason for that, and this is because what really matters is love and support. One person said "I don't know what to say," and just gave me a hug. That meant everything, as there was a complete understanding, with this act of compassion. Its all about 'being there' for a parent in grief. When Tommy passed away, I didn't know who my neighbors were, who dropped off a huge Honeybaked ham. Our entire family didn't want to eat, but this kind act, helped us to eventually. This ham helped us make difficult decisions, such as the funeral arrangements and burial plots, which were by no means easy or void of emotions that wore us out physically, mentally, and spiritually. The kindness of neighbors who simply dropped off food, such as these folks, who I've met and thanked, meant everything in a time when everything seemed upside down. Its proof of a loving God, and that in a time of suffering, "love your neighbor." That's each and everyone one of us, and when one of our neighbors has lost a child, it is imperative for you to be there for them.

Thursday, January 6, 2011

Bob Ross+Tony Dungy+Tommy Ross's Love of a Toy=Simple Can Be Beautiful

Bob Ross, the famous painter known for being on PBS, sadly lost his life in the mid 1990's. Yet his legacy lives on, and I wish that I could say I was related to him. He was certainly a classy individual, who got me to watch a lot of his episodes, even though "painting ain't my thing." How could you not enjoy watching a man, with hair that I'm jealous of, peacefully painting away majestic outdoor scenes, with his "fake made up colors," along with "happy trees" and "happy clouds." Bob Ross had a aura of bliss surrounding him, and while he is with God, his legacy continues on. Coach Tony Dungy. What on earth does a former NFL coach have in common with Bob Ross, that prowled the sidelines of the gridiron?

A lot actually-faith, wisdom, and a statement that Coach Dungy made in his recent book, that brings us to my son Tommy, who passed away from a seizure related to Angelman Syndrome. Tony Dungy stated "What matters in life is the legacy of which we leave to others." Some may say that is a simple statement, as was my son's playing with a toy that was far from fancy. Its a bobblehead Tiger sunscreen dispenser, and I still have it, and often think of him playing with it. He used to laugh and play with this toy for hours, and I often think Tommy had the right idea on life, much like Tony Dungy and Bob Ross. Keep it simple. Find something you love and stick with it.

You don't have to do anything special in life, other than "being of significance to someone else." It could be as simple as giving someone a hug in need, a shoulder to cry on, or just surprising someone with a smile. All of us, just like Mitch Albom has so "simply" written, are interconnected. Sure, we are individuals, but all of us are a family, no matter what our ethnicities or religious backgrounds are, etc. A biologist told me that we are at a minimum, 1/32nds related to each other. That's right, we are all brothers and sisters. Our joys and pains are shared by our family here on Earth, and we can experience something together, and walk in step for a change that is necessary.

That's where the seizure angle comes into play. Seizures do not discriminate. They don't care if you are a Democrat, Republican, Independent, or Member of the "Save the Passenger Pigeon" Party. That's why, as a family we have to work together, to find this cure together, and by supporting Vanderbilt University's program to end this menace once and for all. Is that simple? Yes! Its one single goal, not some extrapolated cause that's got a whole bunch of branches on an "unhappy tree." If we raise funds for Vanderbilt, by creative means and foot leather, then the folks who aren't so simple, (ie. the researchers who's IQ's are fifteen times higher than mine) can finally discover this cure. Another child won't go home to God too early, because everyone should live a life of value, that allows them to end up eating tapioca pudding while wearing chest high plaid pants.

The image of Tommy playing with his sunscreen bottle, is what I'd consider to be Bob Ross's "Happy Clouds and Trees." His legacy is he has touched a worldwide community, of which we are all part of. Finally, out of the sadness of his passing, has come a movement to stop seizures forever. Do you not think God has a part in this? Of course God is behind this movement, and I have not one doubt that the efforts to find a cure, are of His choosing. Yet by keeping our purpose simple by fighting these seizures, life on Earth can be more of what Coach Dungy, Bob Ross, and Tommy Ross have in common, and what we share. That's a legacy, and let's keep the train rolling down the tracks for a cure for seizures!

Tuesday, January 4, 2011

Resillience-Proof of a Loving God

I work in a uniformed capacity, and after the death of my son Tommy, it was as if "the world came crashing down." Nothing mattered, and life as I knew it before, was a dark, damp place void of emotion or compassion. It was a period of deep anger and profound sadness, which just led to feeling completely numb to everything. Gloom was the order of the day, from the time I woke up, until the time my eyes let me somehow go to sleep. The best way in frank terms to describe this time, was "I don't give a damn." Its horrifying to realize that you have near sociopathic tendencies, and it was through the power of an angry prayer, that finally it dawned on me that I wasn't alone.

Alone. Sometimes I really like the peace and tranquility of being alone, but people have always been so fascinating. How could I have lost my love of people, and how could I be full of such animosity towards others, along with God? Prior to Tommy's passing, I have to say that my faith was weak. It still is sometimes, as its a work in progress, much like everything else is. On a cold January day I went through the motions of being at work, responding to calls, and just not caring one bit other than doing what was needed to be done. Forget that "going the extra mile cliche," as giving any extra effort was just not going to be happening.

It was a freezing day, with heavy wind gusts, and I was stupidly wearing a short sleeved duty shirt instead of the long sleeved version, with the sweater and coat that I'm quite fond of this winter. I just didn't care, and sat in a parking lot, hungry, bitter, and screamed at God. If it sounds like I was one step by being part of the "Cuckoos Nest," that wouldn't be far from the truth. I screamed at God, "Why did you take my son? How could you? Why, Why, Why?" The fury and rage were unmistakable, and if there were any animals or people nearby, they would've run in the opposite direction, with good reason.

A call was dispatched to me. I remember cussing, as this routine service call was supposedly handled the night before, and it was at a middle school far away. Another swear word. The hunger for food didn't help my already "prickly attitude," and I slowly made my way in that direction. Schools in our area rent buildings to churches on Sunday, and as I pulled in, I waved to an older gentleman in a security uniform directing traffic. My plan was simple, and that was to go in, get out, and return to the warmth of my vehicle. The call was handled in three minutes, and I walked back to my county car, looking forward to cranking up the heat.

Yet something that I cannot explain to this day, pushed me to this older gentleman, who was done directing traffic. Did he have to be so far away in walking distance? He was a bit far away, yet something kept pushing me to him. We shot the breeze, laughing about "shop talk," and he told me about his growing up. This gentleman told me that "as a black man growing up in the Jim Crow South, life wasn't easy. My father left our family when I was fourteen years old. I had to become the defacto father for my younger siblings, while going to school, and working to help my mother and all of us survive." It was a moving story, and I was taken aback, and realized that perhaps "life isn't fair, its what you make of it." I asked him if he ever reconciled with his dad, and he said that years later he did in fact do that. He told me about going into the military, and being a federal government worker, before retiring and just helping out his church with traffic duties each Sunday.

He looked at me, and said "Did you go to school around here, and if so what year?"  "Yes sir, 1994 class at Fairfax High School." His eyes got sad, and he looked down, mumbling "You probably never heard of my son then." I asked him about his son, and he with a pained expression said "My son died at Herndon High School in 1983, at age 16 of a congenital heart condition, while practicing on the football field." Blam! Every goosebump on my body was charged, as he kept telling me "how devastating it was, and yet how happy he was to have found such a wonderful church." I looked at him, with tears rolling down my face, and just hugged this man, who I later found out was named Bill. I told him about Tommy, and how I had prayed before meeting him, albeit angrily, and we just hugged and cried together.

It must have been a strange sight to see two big guys in uniform hugging and crying with each other in that parking lot. As I type this right now, I'm actually chuckling just thinking about it. I didn't want to stop hugging this man, and we talked about what losing our sons meant to us, and how it ultimately has changed our lives. Finally a call came over, and although I didn't want to respond to it, I knew that I had to. Upon leaving Bill, he looked at me, and with conviction of which I've never seen, he said "resillience." That was indeed the answer to my prayer. It was right in my face the whole time, but through God, Bill was able to relay this message of deep significance. Having a thick skull can be a real pain, but God certainly woke me up that blustery day.

The rest of the day was exceedingly busy, and I have and still do not like running from "call to call" nonstop. It is irritating. Yet that day I didn't mind. In fact, I couldn't stop crying tears of joy, and had a feeling of bliss that is impossible to describe. There have been painful moments since then, and there always will be. You don't get over the death of a child, you get through it. And sometimes we have to admit that even with our imperfections and issues, that while we have control over some things, God is at the steering wheel. I am no longer angry at God for taking my son. Do I wish it didn't happen? Of  course! Yet I have faith that there was a reason for this, and I believe that God is endless love. He certainly proved it  this day, and continues to in both jaw dropping ways such as this, and other gentle ways.

Sunday, January 2, 2011

Tommy's Life: Its The Legacy That Matters

All of us are going to die, and it doesn't matter how long you live, but the legacy that you leave behind that does. Quality vs quantity is what is how you judge it, and my son Tommy changed a lot of people's views in his five years on Earth. Tommy was born on July 21, 2004, and I'll never forget seeing him for the first time. His blond locks of hair, blue eyes that just seemed to sparkle, and his closed fist when he entered this world. He even gave a "thumbs up" on the warming table, and to see this eight pound and five ounce baby, and holding him in my arms, was an emotional experience. I'm not ashamed to say that I cried tears of joy, and the feeling of being a father was a remarkable, special moment that changed everything.

Tommy went home a few days after being born, and it was just such an exciting period of time for my wife and I, along with his grandparents, and the rest of our family. He was just such an adorable boy, with unlimited energy, and a look that could make anyone's heart just melt. Yet Tommy started to have some feeding issues, and he would scream constantly, and didn't sleep but five minutes at a time. Our pediatrician, who was a wonderful man with compassion running through his veins, assured us that all was okay. He simply had gastric reflux, which is quite common, and he prescribed him various medications. They would seem to work for awhile, and then he'd be back to screaming. Its a powerless feeling, to have this innocent child in your house, with such a voice that it could almost shake the foundation. After a few months, he lost a lot of weight, and was labeled a "failure to thrive baby."

This was so painful. How could this beautiful child be labeled "failure to thrive? " What did that mean? There were more questions than answers, and Tommy had to be hospitalized. He was given a feeding tube that ran through his nose, and he was pumped full of what I'd consider "baby steroids." It was pure protein, and he eventually put on weight, and my wife and I started to think things looked good over the horizon. However during that hospitalization, Tommy went through a battery of tests. Our pediatrician assured us that "he just wanted to check everything out, " and when he was discharged, we felt confident that this dark chapter was behind us.

November. The beginning of this being a painful month, and one could say that  Guns N Roses "November Rain" became a theme song of sorts. We were called at home, and told that we would have to meet our physician the next day. I didn't think much of it for some reason, perhaps it was denial, while my wife fretted about the news that was to be delivered. We went to the doctor, who was my pediatrician growing up, and he sat down besides us. He told us "Tommy had Angelman Syndrome, that he was intellectually disabled, and that he'd probably never speak and might not walk." Thud. Thud. Thud! THUD! What devastation and ripping apart of the seams at the fabric of life. I remember vaguely running out of the room in sheer shock, and thankfully our doctor grabbed me, as I screamed in the parking lot "There's no God!" Crying uncontrollably, and looking at my wife, I didn't know what to say or do.

It was a numbing experience. Our doctor knew a bit about Angelman Syndrome, as he had another patient with this condition, which affects roughly one in 15,000 births. He told us "Tommy will love you in a different way." It didn't make sense at the time at all. How was a baby with an IQ of nothing supposed to love us, and how could we love a child so disadvantaged? We were just in a state of shock, and I don't remember driving to the geneticist that he sent us to. She answered our questions, and we had a better grasp of what we were dealing with. I couldn't stop weeping, and all of the dreams of playing baseball and going with my son on fishing trips were thrown right out of the window. There would be no camping, no love of history to share with him, and how could I relate to him on any level?

Yet, while I made many mistakes and am not a perfect parent, I did learn to love Tommy again. My wife said it eloquently, about the situation we were in. "We just buried the child we thought we had, and now we are going to love this child." So true, as it felt like the child we thought we knew had died. Yet he was alive more than ever, and he soon showed us that he could love us, and we certainly loved him very much. His laughter and smiles were contagious, as Tommy had a hug that was like a vise grip. He would find joy in the most simple of things, which caused us to finally be able to do so as well. I'll never forget Christmas's with him, where he was interested in the wrapping paper, and he certainly destroyed a lot of my catalogs and magazines.  The guys at the recycling center probably thought, "what devoured this Cabelas Hunting Guide?"

Tommy made incredible progress. He eventually was able to understand "cause and effect toys," and became quite an eater. A lot of credit goes to my mother-in-law Lia, who is a saint. She never gave up, and was a benchmark of strength during difficult times, along with my parents, relatives, and friends. Tommy never quit either. He loved water, and his favorite toy was a simple bobblehead tiger. I still have it, and although its sometimes painful to look at or hold, it does usually bring a smile along with tears. And that's okay, because I'm glad that he found toys to be so amusing. His ball pit was a place he always wanted to be. It was ridiculous looking, a purple hippo, with a tunnel and those balls in it like you'd see at a Chuckie Cheese. Tommy would spend hours upon hours in there, and would laugh and bounce all over the place.

Eventually he entered preschool at Little Run Elementary, which is the place you want to go, if you have a child with special needs. The same goes for Waples Mill, when your child hits kindergarten age. He loved school. While I enjoyed skipping school years ago, Tommy would be so excited in his wheelchair when the bus arrived. I'm especially thankful to all of his drivers, who loved him so much, and their assistants who kept an eye on him to make sure he was okay. He loved that bus, and during the City of Fairfax's Fourth of July parade, he would smile and bounce when the firetrucks and police cars would crank up their sirens. The louder and brighter it was, the more Tommy found joy.

The seizures started innocuously enough. We were warned that he'd more likely than not have seizures, and that they would begin when he was around two. His first one was when his physical therapist was in our house working with him, and we took him to the local emergency room, as was planned in advance. There he went into having massive grand mal seizures, and had to be transported to Fairfax, where he spent time in the Pediatrics ICU unit. Eventually the right medication was found, and there were plenty of sleepless nights with him, watching him smile when we brought his "Baby Tad" singing frog toy with us. Eventually he had to be rushed from our house by ambulance, and he was unconscious. I was scared as I handed him to a paramedic, who told me that he was breathing. Yet the ambulance took awhile to take off, and when it did, I followed while my wife was in the back with him. I cried tears, fearful and concerned, all the way as I stayed on that ambulance's tail, even running red lights behind it. A crash team arrived in the ICU ER, and put an oxygen mask over him. I thought this was it, and they took him away, leaving us to pray in a waiting room for any news. Finally a doctor came out of the doors, and said that the seizures had stopped, and that his neurologist would be there to find a medication combination that would keep these from happening.

Tommy made great progress when put on Keppra. He rarely had a seizure, and they were mild. There was no need for emergency doses of valium, and he grew in height and size at a massive scale. His nickname was "Porky", since he looked like he could play the linebacker position for any football team. Yet he didn't have a mean bone in his body, rarely cried, and just had a cherubic angelic appearance at all times. Sure there were times I had to pick him up from school, due to minor seizures. I am forever thankful to my boss for letting me leave work when needed, and my boys have always been supportive. One particular occason makes me laugh right now. I got a call that I needed to get Tommy right away, because he was sick, and they were concerned that he was going to start seizing. The crummy car I had was pushed to its limits, and when I walked in, he looked just fine. As I put him in his car seat, he started laughing and smiling. Perhaps he did want to skip school that day :).

My father in August of 2009 surprised us. He told my wife and I to meet him at the neighborhood pool, where he had Porky with him. We had no idea of what we were going to see, which was Tommy walking completely fine across the entire pool. It was a moment of pure happiness, and he was smiling while going from end to end. The community knew Tommy, and was so happy to see this event, which we have on videotape. In late August his younger brother Alex was born, and we were so thrilled to have a little brother for Tommy. We had been reading that those with special needs, greatly benefit from having a sibling, and although I didn't want my Alex to ever feel pressure, I was always concerned what would happen to Tommy after we were gone.

On November 4th of 2009, a parent's worst nightmare occured in our house. Tommy was taking his usual afternoon nap, and I took my dog out front to "do her business." My brother came out screaming "Get in here, I think Tommy's dead." All I remember is running in at full speed, grabbing him from his bed, and knowing he was gone. I called 911, told them my five year old was unresponsive, and for the first time in my life, didn't know what to do. It was just too much for my mind to comprehend, as I held my son, and after prompting from the dispatcher started CPR. The paramedics, police, and firefighters arrived in just about two minutes. A lot of that night is a blur. The trauma just blanked out a lot of what happened. The medics worked on my son, and did everything possible to revive him. One of them told me to sit in the front of the ambulance, while they brought him outside, continuing to do CPR. The ambulance just sat there. I remember crying out "Come on Tommy, Come on Tommy, beat this, beat this, beat this. You've got to live!" The ambulance continued to sit there, which I knew was a very ominous sign, as I've been in emergency situations before.

Finally the ambulance driver popped in, hit the lights and sirens, and we were off to Fairfax Hospital. I remember getting mad at people who got in our way, and they brought Tommy into the pediatric ER. A paramedic came to me and said "I want you to," and I just cut him off rudely saying "I know the deal. My son is dead and there's no God at all." There was my son, surrounded by doctors and nurses, and they told me to hold his hand as they stopped the CPR. I cried uncontrollably, screamed at God with venom that I never had before, and my wife and the rest of my family arrived. Thankfully a social worker kept me from destroying the entire room, and we just sat and cried, and held Tommy's lifeless hands. It was so cruel to just see him lying there, with a vacant look on his face, and a smile on his face. His hands were open. Mitch Albom's "A Little Faith" talks about this. When we are born, our hands are balled into a fist, so as to say "I'm ready to face this world." When we leave, our hands our open, as we've learned all of life's lessons.

I don't remember much of the drive home. I do know that my father drove us home. Instead of having my son next to me, all I had was this stupid red book about grief. It wasn't fair. How was a parent supposed to outlive his child, how could God be so cruel? I remember crying out on the front of my house that night, with the outside light flickering on and off once. It seemed strange, and there wasn't a lot sleep or eating for days. The hardest part was seeing the clothes prepared for my son, I wanted them out of my house immediately. I also threw out the sweatshirt I was wearing that night, as I never wanted to see it again. It was red, Tommy's favorite color, and I was just so "out of my mind," because of my son's blood being on it. Seeing my boy in a casket was so painful. There's just no words to describe how hard it is, and when it was closed, it was as if I was being buried. Yet one of my aunt's said something profound after we tossed the dirt upon his coffin, that's buried six feet deep. We released a couple of helium balloons, in honor of him, and they were having technical difficulties. Yet they somehow managed to catch a wind pocket, and flew high into the sky. My aunt said, "Just like Tommy, against all odds."

I'm proud of Tommy. He learned to walk unassisted across our living room the week prior to his passing, which was caused by a Angelman Syndrome related seizure. This caused cardiac arrest, and I'm glad that he was unconcious for this series of events. That at least offers some comfort, and I'm not ashamed to say that I cry often thinking about him. I want to become a better man because of him, and now know and fully understand God's plan's don't always coincide with what we want. There's been a lot of tears, some prayers full of emotion, but also some smiles and laughter. The past year has been full of some amazing spiritual encounters, that have reinforced my belief in resilience. Its not been an easy journey, and I've been saddened again by recent news of other children losing their lives to seizures.

All I used to care about was getting ahead at work, and being successful in life. That doesn't matter. What does is trying to make a difference, and instead of being hurt by negative energy, harnessing the positive approach of fighting these seizures head on. I used to be afraid of death. That is no longer the case. While I hope to live until 100 so I can fulfill a rather interesting adventure, its not up to me. Yet in the years of life that I have left, much like the jar of sand that is limited, I plan on finding a cure for seizures. Its not going to be easy, and there will be tears and sorrow along the way. Yet there will also be hope, and that's why I need the help of many. I'm just a simple man, but my prayer is that many will embark on this journey, to work with Vanderbilt to find a cure, for those with Angelman or any other seizure disorders. Enough is enough, and I'm convinced if we work hard enough, we can find a cure for these in our lifetime. RIP Tommy, and all those who've had their lives cut short by seizures. A cure is just around the corner if we work dilligently enough to get the job done.

Suck Feizures-The Tommy Collection from "Angels On Earth"

"Suck Feizures," is a rather strong play on words. Some may consider it offensive, and I do humbly apologize if this bothers you. It is not my goal to discourage others from the fight for finding a cure to end seizures, nor is this expression contrived from anger of losing a son to this. God's plans are not always what we like, but my prayer is that the experience of my son's passing, will eventually lead to as Robert Frost so eloquently penned " a path less traveled." Many in the Angelman community, have felt anguish and heartbreak, feeling powerless as their son or daughter writhed in non-stop seizures, which can lead to despair. While God may be at the steering wheel, as parents we are responsible for our children's well being. So many families with angels have felt "hopeless" as their little one seized up, either at home or long duration stays at hospital intensive care units.

The developmental milestones of an angel, are further hampered by seizures. When my son Tommy was alive, he lost a lot of his accomplishments due to them. Many other families have seen great strides, that took years in the making, wiped out by these awful seizures. Some of us, have had our children die from them, which will suck your spirit into an abyss of pain that I wouldn't wish upon my worst enemy. Anger is a double edged sword, yet the majority of this sword, is faced inwards. It hurts you more than anyone else, and instead of having your blood pressure rise with permanent effects to your physiological well being, let's look at "Suck Feizures" for a moment.

The "F" bomb is a strong word. Originally its of German origin, "friechen," which is to strike. That's what we should be doing, striking these seizures with the sword that David used against Goliath. This sword is not a weapon in a physical sense, but it does require commitment and a fighting spirit to reach our ultimate goal. I will never get to hug my son or see him smile upon Earth again. Many others are in the same boat, or as one parent has said "crappy road." It certainly is that, yet there's hope after tragedy. Vanderbilt University's Kennedy Center is working hard, to find a cure for seizures for folks with Angelman Syndrome. Their work may stop seizures from those affected by other conditions, and eventually make epilepsy a "tormentor of the past."

The link included at the top is to a store called "Angels on Earth." The shirt is controversial and an attention getter. There's no denying that. Yet, with the sale of each of these shirts from the Tommy Collection, money goes to Vanderbilt for research imperative for finding the breakthrough that is just around the corner. It will happen in our lifetimes. Each shirt you purchase, will bring attention to the anguish of many, and will go to a good cause. This is what you could call a "win win situation," and that's what it is all about. Let's strike these seizures now. Failure is not an option, and the easy path in life, is never the way to achieve any accomplishment of substance. So if you can, please order one of these shirts, and have an expression of how you feel on your back, along with helping out the folks at Vanderbilt strike seizures down forever.

Saturday, January 1, 2011

Vanderbilt University: Angelman Syndrome Related Seizures Research

1.) Visit
2.) Click on "Online Form" under "Give Online or By Mail"
3.) Fill out the form and make sure to include Angelman Syndrome research under the "Special Comments" section.  They may also include any special instructions regarding the gift in this area.

Here is how you can directly help stop seizures, especially those related to Angelman Syndrome. The Vanderbilt Kennedy Center is at the forefront of research, and they need our help right now. Although a lot of institutions and pharmeceutical research groups are trying to find a cure, Vanderbilt directly serves the AS community. Every day families with an angel in their brood, are able to go here and get immediate assistance in stopping seizures. In addition to this, the Vanderbilt project has already provided potential medicine combinations, that have permanently stopped seizures in some patients. These were "hard cases," that neurologists and other specialists couldn't do much with, until Vanderbilt stepped up, and rendered assistance.

Times are tough right now, but if even a few folks could donate any amount, that will ultimately lead to new projects that hold the key to solving the riddle that seizures are. It will certainly support those in the Angelman community, but it might just go farther than that. The strengths of many are of the upmost importance, and even if everyone just made a small donation, it would lead to a cascading effect that could make all the difference in the world. A parent who brings in their child with Angelman Syndrome, will no longer feel powerless as their little boy or girl seizes up in front of them. There will be less hospitalizations, a decrease in developmental abilities that are often are sacked completely by these seizures, and a much better chance that a parent won't have to endure the trials and tribulations that follow losing a child to this activity in the brain. If you can help, please give as generously as possible, because this is one effective program, that's doing more than anyone else in the field of finding a cure for seizures.

Stop Seizures Now

The pain of losing a child, is aptly described as a parents worst nightmare. There's no more appropriate saying for such an event, that still is far too common, even in this age of "advanced medical technology." Yet children die, and their parents are left on Earth in sheer anguish, heartbreak, and a whole host of emotions that are impossible to fathom unlesss you've been in these shoes. I wear these shoes, and while they might heal, they have a hole in their sole that's going to be there until I take my last breath. On November 4th 2009, my son Tommy passed away from a massive seizure, at only five years of age. Its unfair, as his zest for life and enthusiasm for others, make my energy in this area pale in comparison.

A parent is supposed to die before their child. That's the "natural order," of things, but it does happen. A child died yesterday, a child will die today, and a child will die tomorrow. Somewhere right now, a parent is holding upon their little ones hand which is void of life, and another is getting their little ones clothes ready for burial. We all die, that is inevitable. There's no way of getting around that, because as Benjamin Franklin so wisely said, "The only two certainties of life are death and taxes." Yet, we have an opportunity to do what we can, from preventing another youngster from passing away due to seizures.

For the most part, seizures do not kill those who are afflicted with them. However, it affects a person's quality of life, can lead to developmental delays, and sometimes does in fact take that person away from here. Tommy walked tall the week prior to his passing, and now it is time for all of us to do the same. This doesn't mean we have to climb Mount Everest, or create an invention that will change society for the betterment of others. Yet, we can partner with a group devoted to stopping children from seizures, and that is the Vanderbilt University Kennedy Center. They are at the forefront of research, and as a simple man, I am incapable of discovering what can be done to medically stop this malady that has taken far too many children from their parents.

This first blog posting, is just the beginning steps of a new path, that I pray will ultimately lead to a cure for seizures, by the time I leave this realm. It is my life's mission, as I have agonized and prayed over this, and want to see these eradicated. I do not want credit, but rather to be a catalyst for change, with the guidance of God and the love of many who understand how important this is. Vanderbilt's program holds the promise, as they've already make groundbreaking discoveries, especially in regards to Angelman Syndrome seizures, which took Tommy and gave him wings. The last few weeks have been especially difficult, as two other children who's families I've been in contact with, have had to face such trial and tribulation.

We can do this. As a group of compassionate beings, with a commitment to getting the necessary funds to Vanderbilt's program, we can do something truly remarkable. There's no giving up or going back, and while there will be bumps on this journey, by the grace of God we shall be the backbone of the researchers successes. Prayers are appreciated, but it is time to put faith into action, and with as must haste as we can muster. So please, let's start this first stage by reaching out to congregations of all backgrounds, and groups that can aid us in our battle to achieve victory over this menace that must be stopped. Much more to follow in the coming weeks and days, as a walk through the Washington D.C. area is planned, and a link to Vanderbilt with instructions on how to help will be posted. God bless you, and may we get "the train a rollin."