A Message to Parents Missing Their Little One During the Holidays

It is so painful to be by the Christmas Tree, or the Menorah without your little boy or girl, isn't it? That empty chair at the table, the hole in your heart, that just seems to always linger with you, not quite leaving you at peace. Your child is, but your soul is churning with all of those memories, both good or bad, in the time that you shared with them. I am a little over two years since the passing of my boy, and I am not going to run away from Christmas celebrations, but it is hard to think about, "what if." Yet, the harsh reality is my son is gone, and there are so many other people, that are in the exact same position. They are hanging up Christmas Ornaments that their child loved, or perhaps was made for them, by someone special, such as a grandma or grandpa. You dread pulling out that box, with those decorations in it, knowing your heart is going to skip a beat, and the walls might just come crashing down upon you again.

Yet they don't have to. Those tears are fine, and if they are needed, they must be shed. At the same time though, its up to you to find what makes you satisfied. Is there such a thing as complete happiness? Last time I checked, nope. There is satisfaction, and this comes from several sources. One, is are you content that you are making a difference to someone else's life? If you are, then you should be satisfied, and it doesn't have to be anything big at all. During the holidays, reach out to someone in need. It could be as simple as giving a homeless person a sandwich, putting a couple of dollars in those red kettles that appear at every corner, or just letting another kindred soul know that you care about them. Two, think about those memories, but think about them in this way, would your child who you miss so much, want you to suffer year in and year out during these times? Honestly. Dig deep, reflect upon this for some time, but I am betting, and not being a gambler I don't roll the dice, your little boy or girl, wouldn't want you to constantly be in pain during these holiday periods. Instead, focus on the joy that they brought you, and share it with others. That is the ultimate gift, and it is satisfying both for you, and the person that you've touched through the legacy of your child.

Christmas and Hanukkah, and other holidays have been overcommercialized. Its okay to be irritated about one thing, the stores having related displays up after Halloween. The next time you see Santa Claus on November 1st, as part of a blow up display full of that hot air, deliver a knockout punch :). Its a tough period no doubt, but hold on to those happy memories. Yes, there is an empty chair, and empty spot, where your little one used to be there during these special times. Yet they still can indeed be, cherished moments, and this year while I put my son's decorations up on our tree, there was a lot of thoughts among family members. They can share their's if they like, and I hope that they will. When looking at Tommy's decorations, I now know he is with our loving God, and that while its okay to cry, at the same time, its important to remember what he did, and let his brother and others know about what he was able to accomplish with his time on Earth. That alone, is able to bring up some joy, and yes there are tears, but most of them are of the festive variety.

The Day my Boy Died. The Music Didn't Stop, The World Didn't Stop Moving. Our Hearts Skipped a Beat.

Having to do CPR on your own five year old son is unfair, but it has happened to me, and countless other parents, whom contend with epilepsy related conditions. I do not want your sorrow, rather what I desire a cure, so that no other parent, shall be placed into this situation that could only best be described as a parent's worst nightmare. It is true that my Tommy's heart stopped, yet cars continued to fly down the highway, as the ambulance we rode in, made its somber ride to an ending that was already written. Music continued to crank out of the angry commuter, going in the opposite direction, probably irritated that an ambulance was further delaying his trip home after a day of work. Tommy's wings were gained, and the pain of our family, friends, and so many who knew him brought so much anguish, crushing defeat, and an emptiness that no one should go through.

No parent should have to receive a death certificate of their child. I've got Tommy's in a closet in our house. Its not looked upon, because while I know he is gone, as the coffin closed on him and all of his happy smiles and laughter, his spirit lives on in all of our hearts. His younger brother, will know all about him, the picture of his hand print brings both tears and smiles. It is proof that he was and still is a part of our lives, and plenty of visits to his plot under a tree, remind us of his passing on that terrible night of November 2009. Sometimes it feels as if it was yesterday, but most often its as if, this was from another lifetime. There's before Tommy, with Tommy, and after Tommy, but yet his legacy carries on every single day. That twinkle in his eyes, and even though he never said a word, you could see the joy in his expression, that was nothing short of beaming when he was happy. His arms would flap up, which we called "doing the Tommy," and Porky certainly walked out strong, standing tall and walking unassisted.

What's the future going to bring? I don't know other than, it will be carrying on, and not giving up ever, for a cure for seizures. There have been so many children lost to seizures, so many grieving parents, or so many young adults who've never woken up, after experiencing a SUDEP event. As we close out Epilepsy Awareness Month, its important to learn new information everyday, whether we are a doctor, or someone who just wears a white coat with a stethoscope. Your position in life does not matter, nor does your ethnicity, your age, your religion, but rather your character. Each human being is to be valued, and you have each and every chance to make a difference in this combat, which is what we are engaged in. That's right, there is a war on seizures, as just like soldiers have to endure, there are casualties, whether it be milestones delayed, cognitive abilities impaired, or the worse of all death. We are all going to end up in a coffin one day, and that's okay, since the old joke of "don't be so serious, no one gets out alive" is so very true. The reason that some groups have you sit in a coffin, is for a good reason, and its not meant to be pleasant. Rather, its to say, "You have a limited amount of time, to accomplish your life's mission."

Sometimes its hard to figure out what that is, but listen to your heart, and consider times for reflection and prayer. You aren't going to get zapped by lightning to understand what this is, unless you are out on a boat in a lake during a thunderstorm, but rather the hints are subtle. The wind that blows over my son's grave, and jostles the glass decorations hanging off of the tree, is a signal of sorts. Its peaceful, and while many tears have been shed there, the sound is tranquil and is a reminder that there are no guarantees in life, except being able to be of significance to another human being. Tommy was able to do that, even limited by his Angelman Syndrome condition, and inspired a whole family, that didn't just have his last name. We each have unique God given talents, and we also have things that we might not be able to do. That's okay, someone else can help you with "the slack." That's why we are connected in so many ways, and now with the advances in social media, technology, and medicine, now is the time for a cure for Epilepsy. I was stunned to learn the other day, that less than 1/2 of 1% of U.S. government medical research, goes to this condition, which affects one in ten of us in our lifetimes.

It is time for that to change. You got it, the time for the music of epilepsy being relegated as a second class concern, is no longer going to be that anymore. It is going to require pain, even more than all of us who have epilepsy, or have buried a child or loved one to it, have already experienced. Get ready to make a stand, because silence or waiting for a handout, is a defeatist strategy that has never won any front. Whether it be the Civil Rights movement of the 1960's, or the overthrowing of dictators who treat their fellow countrymen as nothing but pawn pieces, this is the time for all of us to move into the checkmate position. You can be an element of change, a harbinger of developments, step by step. Its not going to be one of us, but rather all, and with our connected approach and dispelling of ego's, we can get it done. For you Tommy, and all whom have gone to God far too soon, and to all whom experience seizures or love someone with them. We will succeed. The world is going to stop moving, for our strength in numbers, and the commitment of our hearts.

Big Boulder Resort in the Poconos, PA Feb 24-26 2012: Suck Feizures Trip

Suck Feizures. Yes, that name is harsh, but for those who have lost a child to seizures, watch their little girl or boy go through hundreds of them a day, or contend with them on a daily basis, that's not too strong at all. In fact, it might be too kind. Yet those who deal with epilepsy directly, which all whom love someone or have this condition do, deserve nothing more than to find that cure that we all know is possible. Look at how quickly technology, social media, and medicine are coming together right here, and right now. It is meant to happen, and in order for that day when we can all pop the champagne, and fire up those high quality cigars, we must first organize even further. That's right, just like combat, although this one is of love, its time to put some boots on the ground.

February 24-26th 2012 that shall be happening, at Big Boulder Resort in the Poconos area of Pennsylvania. They have been kind enough to help the facebook group "Suck Feizures," that supports each other while also funding research against seizures, get out and about on their beautiful slopes. 3% of the world's population deals with seizures, and one in ten of us will have one in our lifetime. That's a lot of people, and sitting by idly waiting for a handout, is not in the best interest of those with those medical condition, and is certainly not the attitude of Suck Feizures. Instead it is one of determination, of love, and an unyielding resolve to make the next generation never have to face the pain of epilepsy. Its time for that word to be put in the history books, and God willing it shall be, as we do not give up, ever. Big Boulder Resort has been more than helpful in getting a lot of folks together, many whom are severely disabled with conditions that have epilepsy as a component, and making this event possible. It is with profound gratitude and thanks, that several hundred people, many of whom haven't taken a vacation for years, and want to meet others on the same path, shall be able to enjoy such fellowship on the slopes this weekend.

Are you going to be a Big Boulder Resort in Lake Harmony, PA this weekend? Rock the purple, by wearing a hat, jacket, or perhaps a scarf of that color. That will let so many, whom have never given up, even as milestones and multiple hospitalizations have been required, know that you stand with them. The Suck Feizures Group will be staying at the Comfort Inn, at White Haven, PA, which has also been helpul, and celebrating at the Big Boulder Tavern on Saturday night. On Friday night, we shall have a "meet and greet" ice cream social, with children and family friendly events, all generations are a part of this weekend, that will bring a lot of loving souls together, who shall see that they are not alone, they have family that they never knew they had, and that together we shall through all of the tears, also have some smiles along with the hope that we are doing the right thing. Thanks to all in Suck Feizures, whom are making these activities, including a free raffle possible, and for the kind folks at Big Boulder Resort for starting the first of an annual event. Let's go rock the purple!!!!

http://www.dcski.com/articles/view_article.php?article_id=1311&mode=headlines

The Road to Shambala: Toby Keith and an Old Song with Meaning Bring Cheer

"Wash away my troubles, wash away my pain
With the rain in Shambala
Wash away my sorrow, wash away my shame
With the rain in Shambala [...]
Everyone is lucky, everyone is kind
On the road to Shambala
Everyone is happy, everyone is so kind
On the road to Shambala [...]
How does your light shine, in the halls of Shambala?"

Toby Keith is certainly a man of strong opinions, and his country music, seems to be either loved or disliked, with little in between. However, there's no denying his talent, whether its been songwriting over the years, or that voice of his that is so very distinctive. While I'm still waiting for him to do a cover for "My Maria," because of that voice, he recently put the cover of "The Road to Shambala" on his Clancy's Tavern CD Deluxe Pack. I had never heard of this song, but instantly fell in love with it, especially on a spiritual sense. While singing along to it, I had the feeling that this had more meaning than the words, and upon doing some research, that is indeed the case.

There's a lot of controversy what Shambala is. Whether its from Buddhism or some other form of religion based out of Tibet, or from a Sanskrit background, it's "all good." The main thing is you can feel the love from this song, and its much like faith, in that God wants us to find happiness, even though we are certainly challenged every day. In fact, sometimes every minute. To the poor motorist who had to sit next to me while singing along, with my voice that would get kicked off a church choir, I apologize to you. Getting caught in the moment, those spontaneous times of joy, this song seemed to bring them with playing it, even stuck in traffic that was moving at less than a mile a hour. What's your joy going to be? It can be anything, and the key to finding it, is knowing what makes you happy, and just enjoying it for what it is. This doesn't have to be something fancy, like an all inclusive vacation to the Carribbean, but rather what's in your heart.

Each of us, has to face an abundance of challenges in life. Its what we do when faced with them. All of us have pain, all of us have joy, and all of us have in between. Yet through faith, anything is possible, along with putting on your shoes the right way, and just enjoying each day regardless of what it throws at you. Its how you "soldier up," that determines the outcome, although of course there are times when we don't have our hands on the steering wheel. Yet, even in those times, its our strength of character, the human spirit that is no doubt resilient due to a loving God, that matters the most. Along with a poor commuter, who has the patience to put up with a bald dude who can't sing a note, finding so much power in a song on the back end of a CD.

November Epilepsy Awareness Month: Rock the Purple

If someone had told me years ago, to wear a purple shirt, I would have laughed at them. Why would I want to look like Barney the Dinosaur, that traumatizing kids show entertainer, who I am tempted to run over with my car if he ever waltzes across the highway? The responding officer would say "Didn't you try to avoid this?" "I did." "Then why did you go four lanes across the road to hit him?" Yeah, the lack of skid marks in the right direction in that case, would probably have me in the pokey or worse for a long time.

Unlike Barney, and that horrifying voice that I hope is used for the military's psychological operations division, purple is the color of epilepsy awareness. Each November is the official month, as people with seizures, or who love someone with them, is wearing this color or a ribbon for this purpose. Funding is so vital to this cause, and that same one that is so very close, to so many people's hearts. There has been so much pain, whether at an emotional level, or with regards to productivity. Along with so many others, I have lost a son to seizures, and to bury your own little boy, changes your perspective forever. You are damn right I will wear purple, not only in remembrance of him, but thinking about the folks whom are contending with seizures right now. 3% of us have seizures on a regular basis. If you are in the United States, that is 9 million plus of our fellow citizens. Now with seven billion folks on the planet, just announced this past week, the number of people whom are dealing with them, our brothers and sisters, we must find a cure.

That's what the purple is about. According to the National Epilepsy Foundation, less the 1/2 of 1% of U.S. government medical research, goes to seizure research. I was startled by that number, considering the amount of folks, that deal with this, and also how lab work on this subject could help with other medical issues, such as Alzheimer's and Parkinson's. It sounds like all of us in the Epilepsy Family, aren't get our fair share of the pie. I find that low number to be disheartening, and while thankful advancements have been made, we still have a ways to go for a cure. If the folks at NIH(National Institutes of Health) and other groups got more government funding in this area, the possibilites are unlimited, and not only those who deal with seizures, but these other medical conditions could also march forward as well.

Right now there is a mom, who's been up all night with her little boy, who's been having seizures all night long. There is also a father, with his little girl, cradling her while she seizes up non-stop, stressed out beyond belief. They are our family members, friends, neighbors. Why not give them the help they need, by making a donation to folks like the National Epilepsy Foundation, going to their walk each March, or at least wearing a purple shirt, a ribbon, or making your facebook profile purple? Its up to all of us, to show purple as a way of saying, "I count, and so does a person I love that deals with seizures." This November be sure to wear it, because while it is too late for my son and so many others who have buried their cherished child, this is our time and our chance to finally show our compassion by wearing purple. Let's get the U.S. Government, and others to wake up to our plight, because we cannot afford to lie dormant, and expect action to move without us greasing the wheel.

The Angel Quilt Project-Help Parents on The Rollercoaster of Agony(Angelman Syndrome)

Its so painful to lose a child. Most of us will never have to go through this ordeal, but a few of us will. This could include a young lady just being born right now, a high school boy playing a game of basketball, or a mother and father who are taking their child with Angelman Syndrome to the bus stop for school. Growing up, I had no idea that my son Tommy would be diagnosed with that condition, and his passing came as a complete shock, as it was from a seizure that not only stopped his heart, but the hearts of all whom loved him. The pain is immense, and from a personal perspective, I not only felt pain about losing my boy, but also for my wife, parents, mother-in law, uncles, aunts, friends, people who worked with Tommy that not only included teachers, therapists, bus drivers, and so many more. He had a bigger family than we ever thought of, and his funeral service was amazing. Here was a young boy who never said a word, inspiring so many, and by the grace of God he walked tall the last week of his life here on Earth.

Right now parents are in grief. They miss their children. Angelman parents are an amazing group of people, and to get a diagnosis of this condition(partial deletion of chromosome 15) hurts a lot. A lot of dreams are thrown out the window, yet new ones emerge. For more information about Angelman Syndrome, I cannot recommend enough visiting http://www.angelman.org/ (The Angelman Syndrome Foundation), or http://www.cureangelman.org/ (Foundation for Angelman Syndrome Therapeutics). Yet it is a double dip of pain, even more worse is the loss of an angel, as these kids are known, to an accident or a seizure. True people die every day, but when it involves a cherished child, its a thousand times over. Its as if you have died yourself, and the road of grief never ends ever. Yet it can be eased. There can be less bumps, even as the tears come flying at a rate unprecedented, and your body pushed to the limits, as you ride a cascading roller coaster of agony.

http://www.facebook.com/pages/The-Angel-Quilt-Project/267961783227848. Please go to this facebook endeavor, called "The Angel Quilt Project." Its love through quilting, and families around the world, who have lost a child with Angelman Syndrome, will receive a quilt with their beloved child, surrounded by angels whom are on Earth, who haven't gained their wings yet. One day, God willing all of us shall, but until then, the least we can do is show these parents that they aren't alone, that there are others who love them, and this is faith in action. Angelman parents are making these quilts, and then delivering them to these parents. If there was a musical equivalent, go see Darius Rucker's, pictured above, "Music from the Heart" video. Its on youtube and all sites on the net, just google it, and watch him perform with children and young adult from Vanderbilt's Kennedy Center. Proceeds from these quilts, also help this Center's Angelman Seizure Research Project. You are not only helping a family in grief, you could very much so be preventing another, from experiencing such pain, such anguish, and a lonely road that no one should have to go down on. You'll be doing your good turn, by even liking the Angel Quilt Project.

How do you do that? Go to http://www.facebook.com/pages/The-Angel-Quilt-Project/267961783227848, and click "like" on that page. Look at it, and see what loving quilts have already been designed and delivered. See and feel the compassion there, as it is kindness in every regard. If you make a $10 donation, you are helping with one of the patches on the quilts, or if you are able to, just spreading the word about this cause is more than helpful. All of us are going to die, that is unquestionable. Yet what do you want to do with your life, is the key question that needs to be answered. A lot of these people who are receiving quilts right now are in profound pain. A young lady being born right now, a high school boy trying for that three point shot, a mom or dad with their kid looking at their yellow bus that's taking their angel to learn new skills. These people need your help. You may not know them, but they are out there. This effort is able to help people suffering now, and might just be one of the keys to preventing others from similar misery. Do your part with the http://www.facebook.com/pages/The-Angel-Quilt-Project/267961783227848, and experience love and bring it to those whom need a lot of it right now.

A Loving Family, the Joseph Gomoll Foundation, and Dierks Bentley: Help Defeat Seizures

There is no denying the sheer amount of people that contend with epilepsy. Some have a few a day, or a maybe once a month. Yet there are others whom have hundreds of them a day, and each person who deals with this condition, has a whole host of challenges, in addition to all of the other ones that we must navigate through on a daily basis. Epilepsy makes the sailing more difficult, but those who deal with it, are amazing individuals who are brave, and not willing to give up on a cure. Others have faced this condition in painful ways as well, as it is not only the person who has these seizures that suffers, but also those who love them. It is even more so, when it involves a child. To lose a child is the worst pain a parent can ever go through, and that is what brings us today, to the compassion and kindness of the Gomoll Family, parents Mike, Nory, and children Julia and Sam. They are here on Earth, while their son and brother Joey, has his wings in Heaven, missed by them, and who's lives were touched by this handsome young man.

http://www.joeyssong.org/dierks-bentley/. Go here and learn Joey's story, and help this family, lend a hand to those who still deal with seizures on a daily basis. They are enrolled in a contest that Dierks Bentley, a kind man and great country singer, is involved with about what "home" means to you. From watching this video, I have to say that their view of home is a beautiful one, but its up for you to decide what it means. Their pain is immense, but yet they refuse to give up, and while they are grieving, they have put this sadness to good use. They are giving back, helping others, and with heavy hearts as a family moving forward, to make sure that Joey's legacy continues on. That would be through a CD, that will raise money for this foundation, that helps epilepsy relate groups find a cure, which is what is needed. Joey's brother and sister are right, "love endures," and with each vote, that can further be the case at the site listed.

Please, go and watch this video. Be involved by voting for this, and by making this family's pain, at least eased a bit, knowing that we are behind them in every regard. Father Mike is so right, "the new normal," because while he and all of us for that matter cannot rewind time, it is what we do with pain, and how it is turned into love, that can be beautiful and help others. We each have only a certain amount of sand in our time on earth, it could be five years like Joey, or one hundred like George Burns. Yet, its not the matter of time that matters, rather it is what we accomplish in it, and how we continue the legacy of our children whom have fallen, or loved ones who have made an impact that does. Mom Nory, Dad Mike, Julia, and Sam, I am proud of you, as are so many more. You are proof of Gods love, and of the strength of the human spirit, that resilience that says "forward march," instead of retreating backwards. Years ago, General Patton's "I don't judge a person by how low they go, but how high they bounce back" could very much, describe the bravery that your family has shown.

Thank you for that. You have already inspired so many, and Joe's legacy lives on. You are helping countless people, not those across the United States, but around the globe. For those whom would like to vote, all of the information is at http://www.joeyssong.org/dierks-bentley/. Let's make this happen, because while we cannot rewind this family's pain, we can assist them in getting through, not over this, along with helping those whom contend with epilepsy. This is a very touching video, and I am not ashamed to admit to it leading to tears, but also generating a further level of resolve, to continue to fight for a  cure. This family is going down a painful path, but they are taking the right direction with their feet, but more importantly their hearts. God bless you all, and to all who would like to be a part of their love, go to http://www.joeyssong.org/dierks-bentley/, and spread, spread, spread!