A Father and His Son

It goes against the natural order of things, to have to bury your own child. I am not alone on this, as many families across the USA, and around the world, have been in this exact same set of circumstances. Tommy left us in November of 2009, and there are not enough tears to fill up a bucket. As men, it is ingrained in us, whether biologically or otherwise, not to cry, but cry us men do. We may show our emotions in ways not seen, silently, or through other means, but behind closed doors, tears are shed. A few weeks ago Alex, pictured here, asked about a picture of his older brother's handprint that is on our bedroom wall. I was able to tell him "that's your brother's hand painting", before later on, bursting out in tears. It hurt so bad, but it is my duty to tell him everything about his brother, and what Tommy meant to all of us, as well as to so many other people, who were a part of his lives.

I'm thankful. Tommy lived five years on this Earth, but he walked tall. I am grateful to God that he was loved, and that not only our family, but countless family that we didn't know exist with other last names, were in his corner. Our family is thankful for those who continue to support us, and even in the pain, we continue to meet people who inspire us, and keep us moving forward. Walking tall. Yesterday at Hillsborough Vineyards we met so many more of these angels, and it is with profound thanks, to have drank some wine with them, along with helping a good cause. One particular moment stands out yesterday, and that's when Alex showed up. It was comforting to walk with him, down by the vines, where the grapes are procured for the manufacture of wine. The views, just walking with Tommy's younger brother, gave me a greater appreciation for all of the love I have witnessed, even amongst the trail of tears. This walk, and his kiss at the end, made it all that more sweet.

Today is Memorial Day. There are countless families, who miss their son or daughter, who protected our great nation, and allowed this event to take place. There are no words. I am thankful that I was able to walk with my little guy, who's looking more and more like Tommy everyday, down by those vines and just "take it all in." Twenty one gun salutes will be fired today across this great country, in honor of these families. I don't have the ability to do so, because frankly, I dont want to get locked up firing my handguns or rifles in the air in honor of them, from my front yard. Yet, I am in my heart. To all those men and women, and their families who sacrified, whom gave all, thank you for that opportunity for a simple man to walk with his boy, and just have "that moment." Life is a challenge each and every day, but it is so much better due to the wonderful families that continue to fight epilepsy with love, and to those brave souls who made yesterday possible. 21 guns in my heart, yesterday, today, and always.

Hillsborough Vineyards: Thank You and Let's Beat Epilepsy

Yesterday was "Epilepsy Awarness Day" at Hillsborough Vineyards in Purcellville, VA. http://www.hillsboroughwine.com/. From 11 am-5 pm, the winery not only had the traditional whites and reds, but it also had purple bunting, posters, and a kind man named Doug who sang and talked about the effect this medical condition has had, on people around the world. 5% of us have epilepsy. One in ten of us are going to have a seizure. Sadly only one half of one percent of U.S. medical funding goes to research. This work not only may cure seizures, that have caused people's quality of life to be curtailed, but has also led to the deaths of many. One of them is my son Tommy, who will never be forgotten, nor will the children of other parents, who've been in these shoes. All of us express our grief differently, and that is okay, but each parent I've talked to or met that has the same pair of sneakers, has said "they never want another person to go through such a nightmare."

It is with profound thanks, to Bora, Asli, and staff at this winery, to donate proceeds of yesterdays event to the National Epilepsy Foundation. (http://www.epilepsyfoundation.org) Their generosity is unbelievable, and since they posted it, I hope its okay to put it out there-25%. I was simply shocked, in a good way, of their profound kindness and decency, their willingness to not only host this event, but to give back to an organization that is helping with research and in so many other endeavors. Their family's kindness, this winery, reminds me of a quote from Coach Tony Dungy. "Your life is of significance if you have done something to help someone out." They have gone far beyond that, and if sports adages can be used with what they have done, they just scored a touchdown. A child, a parent, families will no doubt be helped by their generosity, and people at the event learned about this condition, and were kind enough to reach out as well.

All of the families yesterday at this event, a young man named Cyrus a handsome young man with a loving mom and dad, and grandparents, friends, it was inspiring to meet them. Virginia Civil War and other history are so close to this picturesque location, and I tip my hat to Nicole and crew, who had Haymarket invade Hillsborough with kindness yesterday. While none of us were sitting in a house of worship, it was a spiritual experience in many regards. Walking around the vines, taking in the views, and the slight breeze reminded us all that we must continue to conduct a battle of love against epilepsy. Too many people have suffered or are, and we are at that tipping point in medicine and biology, where we must continue to move our chess pieces in the proper position to make it happen. A life without seizures, no young children with their parents, brothers, and sisters contending with this pain, and people being able to live life to the fullest. That's what it is all about, and simply put, nothing else matters.

The wines were delicious. I cannot recommend a better place to get married then here, as they do offer wedding services at Hillsborough Vineyards. Also, I must say that the Red Onyx, Ruby, and Bloodstone were all met with a lot of approval by our folks whom were here. There are whites also, and to those who love wines, this is as some of the real "Virginia wine lovers," the most beautiful spot that many had seen. Its open from 11-5 daily, and the staff here, just makes you feel at home. Come as you are, and see for yourself, that Bora and his family, are going to welcome you to drink their fine wines inside the den, or out on the gorgeous patio. Oregon and California, other states in the Union, and places worldwide, watch out, as these wines are not only made with the finest of quality, but with love. Experience this passion, and again, all of us that contend with epilepsy or love someone with it, tip our hats to our friends here.

Family Fun at Hillsborough Vineyards: May 27th 2012

Rock the Purple! That's right, the official color of Epilepsy Awareness. Millions of people across the United States, and around the world are affected by this condition. There have been advances, such as through institutions like Vanderbilt University, or government agencies such as the National Institutes of Health. Yet there is more work to be done. Raise a glass, or a bottle of what can only be described as delicious wine, that is readily available for purchase at Hillsborough Vineyards in Virginia. Google it or go to http://www.hillsboroughwine.com/, and by all means, stop by here on May 27th 2012 from 11am-5pm ish. Nothing but love for the Baki Family that owns this wonderful winery, that's on beautiful grounds, and offers views and lots of room to just relax for people of all ages. Its convenient to historical areas such as Harper's Ferry and Antietam, and you can just sit back and chill here, drinking some of their white or red wines, while just "taking in the views."

One in ten of us are going to have a seizure one day. The rate of seizures of those on the autism spectrum is alarming, and like many other parents across the globe, I have lost a son due to them. Tommy is missed every single day, as are children, who's parents on every continent often are. Its time to prevent at least one parent from going through this pain, a child from leaving too soon, or perhaps a child from losing his Mom or Dad from seizures. The Epilepsy Foundation of America's "Not Another Moment Lost to Seizures" is correct, and it is our moral imperative, with each generation, to leave this world a little bit better for the next. Steve Jobs was correct, that "biology and technology" are going to come together as never previously witnessed, to help advance the field of medicine, and deliver these cures that have eluded us for so long.

I never thought that a group of people, could pick up my spirits so much, after the passing of Tommy. That dreadful night of 11/04/2009 will never go away. There have been just so many tears. All of the flashing red lights from fire apparatus, our little boy on a bed with CPR stopped, and what can only be described as shock beyond comprehension. It has been painful, there is no doubt about that. Yet there also has been hope. I have seen and met so many people who have inspired me. "Carry on," their actions and what they say, that's what it is about. Fight with love. Indeed, some days are better than others, yet the steely resolve of these epilepsy warriors have made me not only stronger, but have brought a man's who's faith was broken, and healed it more than mere words can ever express. With thanks to them, profound gratefulness to people I have met, and yet to meet. You are family to our family, and the Baki's are gracious, kind, and loving. I tip my hat to them, as they have enthusiastically wanted to help the EFA and generate awareness to this condition, that affects so many families.

So come on out to this beautiful winery. The directions are all at http://www.hillsboroughwine.com/. Its again on May 27th, next Sunday 2012, and let's hope that the weather cooperates. If you are a fan of white wines or reds, they have award winning ones to choose from. I plan on kicking back with the Red Onyx, but whichever one you like, the grounds are beautiful, and its for a good cause. Virginia wines are really gaining attention, not only in the U.S., but around the world. Watch our California and Oregon, we are coming for you :). There is a reason that the wines from Hillsbourough have won so many awards, as they produce quality over quantity, and also with love. Let's show them our love, our purple, and by all means be wearing that color, and helping to generate enthusiasm, and just maybe save one life or have children and adults with this condition or whom love someone with it, just another chance to smile. Carry on, carry on, carry on.

Fight Epilepsy with a Glass of Wine, Heck Make it a Bottle

Hillsbourough Vineyards is the place to be on May 27th 2012. http://www.hillsboroughwine.com/. This winery is on pristine grounds in Loudoun County, close to historical spots such as Antietam Battlefield and Harpers Ferry, where the now famous John Brown Raid took place that led to bloodshed just about a decade later. There will be none of that on May 27th 2012, as rather the fields at this winery that certainly had civil war soldiers walking through it years ago, will now have warriors of a different type. That would be those who have epilepsy or love someone with this condition. According to the Epilepsy Foundation of America, the costs direct and indirect of this condition to the United States, is $17.6 billion dollars. That's right, with a "B.". Three million of our fellow citizens, contend with epilepsy, many of them going through hundreds, if not thousands of them a day. Some of our loved ones went to God far, far too early because of seizures.

November 4, 2009 is a day that will live in infamy for our family. Tommy Ethan Ross, age five, was found unresponsive in his bed due to a seizure. There were loud cries, that night will not leave one member of our family, his teachers, friends until we all go to our Creator. For all of the noise and pain associated with that night, its amazing how quiet it was when the coffin was closed upon him, before being put in a limo to his burial grounds. Yet this event isn't only about Tommy, although his spirit certainly has inspired us. Its more about those in the Epilepsy Community, a family really, who picked up our family, and put us on their shoulders. Carry on, fight on, but instead of anger, turn to love instead. The Hillsborough Vineyards is a family owned and operated winery, and they certainly have compassion, by sponsoring Epilepsy Awareness Day from 11 a.m.-5 pm. I'd like to thank all who were involved with setting this up, and the kindness of the Baki family, who will be on hand to meet so many with epilepsy that fight to be productive citizens every single day.

One in ten of us is going to have a seizure one day. Let's help the Epilepsy Foundation of America, by showing up to Hillsbourough Vineyards in Purcellville, VA on this date. I hope you'll get a chance to meet, those with epilepsy who continue to keep our family going. Every single day I think about them, and am so thankful for their courage, their resolve, and their never give up attitude. I truly love them, and consider them, regardless of their background or name, to be members of our family. This event is free to attend, proceeds from wine sales go to the Epilepsy Foundation of America, due to the generosity of the kind family that owns this beautiful location. Pictures do not do it justice, as strolling the grounds, and exploring their white and red wines is a great way to spend a day. There's a reason they've won numerous awards, and that is their dedication. Let's show them our love, that of those who rock the purple, and not only raise a toast to all who've fought epilepsy, but help make this condition a part of history.

Hillsborough Wine: Fine Taste and Epilepsy Awareness Day May 27th 2012

Purcelville, VA is one of the prettiest spots of the Commonwealth of Virginia. Its a relaxing atmosphere, with the Blue Ridge Mountains, and I have to say that I've enjoyed spending time at Hillsborough Vineyards. I have drank wines before, obviously having very little hair and the ones left being gray, to prove that I am over 21 years of age. Yet I had never been to a winery before, and on my first visit, I was a little intimidated about the idea. Although I've smoked cigars for years, two a month the doc says is just fine, wines and those who produce them, often have a reputation for snobbery. Honestly I do not understand how this is the case, although there are some cigar smokers, who sneer at you if you dare to fire up a certain brand. Apparently, their cigar must smell like roses, and they are so ashamed that you did not use a Davidoff guillotine cutter instead of the store brand one. The horror!

Anyhow, Hillsborough Vineyards is a very friendly place. Family friendly as well, as the Baki family is very kind, and the staff do not have any snobbery in their blood at all. They are the opposite, in fact I felt at home, as soon as I stepped foot on their beautiful property. Truly gorgeous, I was thrilled by the views of the mountains, the grapes growing, and learning a bit about wine. Most of my experience has been with beer, so this was new territory, yet a visit here spurred my interest. The tasting room on site is a great place, unintimidating completely, to learn about wines in a friendly environment. All of the staff were kind, and although I would be laughed at if I wore my t-shirt that looks like a tuxedo, I was wearing slacks and a casual t-shirt. The groups of people on site were having a fine time, there were cheeses to try, along with my now loved Red Onyx wine. They have a variety of reds and whites, and the medals and awards simply say, this is quality over quantity. Everyone who has tried their wines, has spoken glowingly about them, and I am going for the Bloodstone batch the next visit. If you can get to their vineyard, that is the best, but if you go to http://www.hillsboroughwine.com/, you can find out stores that sell their products.

Here is a picture I took of Hillsborough Vineyards. As a picture can "speak volumes", this family and their love of people and their wines, is remarkable in the beautiful part of Loudoun County, Virginia where you can spend a day here. This would have been the perfect spot, for Al Pacino and Robert Deniro to have that "coin flip" discussion in the movie Heat. It would have been a classier venue, and the accomodations are much more comfortable. On May 27th 2012 the Baki Family has been kind enough to have Epilepsy Awareness Day. This is going to be an incredible event. So many families not only in the D.C area, but around the world, have been affected by this condition. 2/3rds of epilepsy causes are undetermined, four percent of the population has this, and only 1/2 of 1% of U.S. medical research is devoted to this. If you want to meet a hero, there will be plenty of Epilepsy Warriors, who come from all walks of life, and are the very essence of being champions in their communities. They have given so much, and many of the new folks being diagnosed with epilepsy and the seizures resulting from it, are none other than soldiers returning from combat zones.

Many have been lost to seizures. The Epilepsy Foundation's slogan is "Not Another Moment Lost to Seizures." For my son Tommy, it is too late. He is with God, along with so many other children, that have given all they had, yet their legacy goes on. There have been so many tears on this journey, for families who have a loved one, whether its a parent, brother, or a son or daughter. If you are able to attend this event, you will meet epilepsy warriors, whom will inspire you. This Epilepsy Awareness Day is going to be informative, fun, and also a family friendly event that's going to be full of love. With thanks to the kindness of the Baki's and Hillsborough Vineyards, it is an honor to be amongst my heroes. Its a privilege, to be around those who refuse to waver, and instead go down the road less taken, to find a cure for seizures. May 27th 2012 at http://www.hillsboroughwine.com/ 11 am-5 p.m., be there and raise a glass, and help defeat this menace with an outpouring of fine wine and lots of love.

Hillsborough Wine: Virginia's Finest and Epilepsy Awareness Day May 27 2012

"Be there or be square." From family lore, my grandmother used to have a dinner bell, and if you missed it, well there went your meal. I was lucky enough not to have missed a drink at Hillsborough Vineyards last year, as I found it by driving down the road, with my wife, brother, and mother-in-law. Our plan was to see Harper's Ferry, but as the rain continued to pour down, we were not able to see the home of John Brown's Raid, or a place that had much significance in the Civil War. Virginia and West Virginia, where that famous town is located, are of course a Civil War aficionado's dream. When I was a boy, I studied this area of history like so many others, and unlike my grandmother's dinner bell, I grew up in a slightly different era. I grew up in Fairfax, VA, home of many skirmishes during that period of time, but didn't have to worry about audible sounds. Rather, it was the streetlights coming on. Yes, I had to be home by the time they came on, and my parents approach to dinner was that it should be done as a family, but at least I was able to catch a late bite after looking for bullets from back in the day, or other artifacts. This would include turtles, snakes, and God knows what else from the woods, where houses now sit.

This day of our trip to Harpers Ferry, my wife noticed a vineyard on the side of the road. There are many in Virginia, especially Loudoun County. In fact, over the past few years, its an honor that the Commonwealth has become among the United States fastest and best growing wine regions. Watch our California and Washington State, we are nipping on your heels. The vineyard that day was Hillsborough , which can be found online at http://www.hillsboroughwine.com/. As a beer drinker primarily, I thought that the day was over, but discovered a lot. I learned about how wine is made, the differences between whites and reds, and most importantly in a friendly atmosphere. For whatever reason, wine has a intimidation factor. At Hillsborough Vineyards I found Bora and his staff, to be very kind, and open minded about my discovering of wines. Sure, I had various whites and reds at weddings and other occasions, but never had I gone to a tasting room. I would have never thought strolling a vineyard, and seeing the grapes, would be an experience that I would like to be a part of.

Yet as that man who sort of grew up from those woods of Virginia, it was fascinating to see the grapes growing, and also walk the gorgeous property. The views of the valley, the mountains where so much history did occur, that was a special day as the rain dissipated and the Red Onyx was tried. I fell in love with this sweet tasting drink immediately, and have since become a fan of this particular blend, and am going to try more. Hillsborough Vineyards has whites and reds, so whatever you fancy, its good to know that you can find what you are looking for there. They do have wine sold in stores, but it is so much fun going to their vineyard instead. There you can relax in their tasting room, learn from the winemakers what goes on to make that beverage so tasty, and about the history of this beverage that of course goes back thousands of years.

On May 27th 2012, from 11 a.m.-4 pm or thereabouts, be sure to stop by Hillsborough Vineyards. Whether you want to stay the whole day, or drop on by after seeing nearby historical locations such as Harpers Ferry, Antietam, or the beautiful Loudoun Countryside, this winery is beyond kind to host Epilepsy Awareness Day. There will be wine drinking, oh yes. There will be foods, oh yes. Also at the same time, there are going to be kind folks who are from the winery, there to help you pick out that delicious bottle of wine, and the tasting room is a place that is going to be full of joy. It is with profound kindness that the Baki family and their winery, have made this "Epilepsy Awareness Day". As most know, 4% of the general population contends with this affliction, and one in ten of us one day will have a seizure. Many of our family members, friends, and co-workers contend with this everyday, from having one occasionally to thousands of them a day. These seizures can greatly diminish one's quality of life, or take a child like my son Tommy, and so many more to God far too early. There are so many crying parents, so many relatives of a child that have cried tears and felt this anguish, and the folks at Hillsborough Vineyards want to fight seizures head on. They are being kind enough to host this event, and are donating proceeds to the Epilepsy Foundation of America.

So come on around, purchase some wine, and you will not only be savoring the taste of fine grapes. You will be meeting families that contend with epilepsy, the loving folks of the Baki family, and also helping children right now, who's parents are wondering "how can I help my little girl or boy more," or preventing another parent going down a road that no one should have to. 11/04/2009 is a day I will never get over, yet what keeps me going, is people with epilepsy. They have a condition that they battle every day, yet they fight, with passion and love, never giving up. As the Epilepsy Foundation's slogan is "Not Another Moment Lost to Seizures," these courageous souls deserve our best, and only 1/2 of 1% of U.S. medical research goes to epilepsy. Let's change that needle in the right direction a bit more, and at the same time, show our love of fine wine at Hillsborough Vineyards. A toast to the Baki Family, to their fine wines of which I look forward to drinking again, and bring out your family and friends to an event that will be nothing short of remarkable.

Angelman Syndrome: The Next Frontier: The Apollo Gemini Mercury Missions, Al Qaeda and the Egyptian Islamic Jihad? What?

This is an exciting time for those in the Angelman community. At the same time it is very stressful. There are twenty four applicants selected for a clinical trial in Tampa Florida, and all of our hearts, thoughts, and prayers should be with them. This is also a stressful time. Familes who have been close aren't so much anymore, and with the stretching of the calendar and endeavors of success, I am hoping that this will one day be nothing more than a molehill. Its up for all of us to believe in a higher power or not, regardless of whether you are Christian, Jewish, Muslim, Buddhist, Hindu, Sikh, or many of the other religions, organized or otherwise that exist. If you are an atheist, that is fine too. Christopher Hitchens, how can even the most faithful man not love him, and his provactive and inquistive questions? Last year we lost him of course, and I have lost a son to cardiac arrest, caused by seizures, caused by Angelman Syndrome. Every single day I pray, that no other parent or family has to go through this.

It took some time, deep reflection, and the change of many things, including hitting a reset button of sorts, by changing to a new church, exercising in new ways, and so many other avenues to come to the conclusion that my dreams for Tommy died on 11/04/2009. It wasn't easy to realize this. In fact, today's date is some 2 1/2 years later. This I am going to live with the rest of my life, as will other families who have lost a little boy or girl to Angelman Syndrome, or other conditions. None of us, I am sure, even on our worst days, would ever wish for a family to go through even one 1,000th of the pain such an event entails.

The two main charities in the US for Angelman Syndrome are FAST or ASF, ASF or FAST, however you like to put it. I support both, as I do any effort that generates awareness for this rare condition, that the vast majority of people have NEVER heard of. Even doctors. There are not enough families or people affected with this condition, to engage in fighting with each other, as this will lead to what can best be described in the Al Qaeda/Egyptian Islamic Jihad debacle. For those of you who are not familiar with what occured, first of all I'm glad just like people of any background, that Osama Bin Laden is fish food. Al Qaeda and the EIJ had an uncomfortable alliance, in that they had the same goals, and that was to kill "as many infidels as possible." This included people of all faiths, because in their view a Muslim who wasn't praying or died in the line of their terrorist attacks, was of no relevance anyway to their strategic goals.

Most of us should open our eyes, and have friends of all colors of the rainbow, all religions, and all countries. Angelman Syndrome doesn't discriminate. Al Qaeda and the EIJ failed, because there was too much division, finger pointing and spying on each other when none was needed, and too much mistrust. There was animosity, and in their case I'm glad for it. I'd be more than happy, just like any other sane person should be, to put a bullet right in Zawahiri or any of the remnant's foreheads. Yet, right now there is something important beckoning, and that is losing our eyes on the prize. My son rests six feet deep. It is my sincerest of beliefs that he is with Jesus, God, the Holy Spirit. To each their own though. If you do or don't believe in God or a higher power in any form, that is fine, but do not give up on our 24 brave angels, any future projects from the ASF or FAST, nor each other. We have a common enemy, and we may not all be friends, but by God, we must not let disagreements get in the way of progress.

In many ways the 24 going to Florida, are a lot like the Mercury 7, the Gemini 12, or the Apollo larger number of brave souls. They are going into uncharted territory, with their families who love them so much. We must support them, and help them in any way possible. At the same time, we cannot tear other angel families apart, for any reason. Handle disputes off line. I've been guilty myself of being feisty, if we could bottle the passion of Angelman families, I would, and copyright it. And thus be a rich, bald bastard and live in the Carribbean somewhere on my own island. Passion is good, yet when lots of parents, its not just one, but many feel as if they are not welcome, or are going to get ripped apart by a mob for whatever reason, there's a problem. I do not want to get directly involved in this. Yet I am saddened. I do not have any particular sides in this, but other than feeling sorry for so many families that love their angels, and want the drama to cease.

If the Americans and the Russians, in the hottest part of the cold war could come together for the joint Apollo-Soyuz mission, then by the grace of God angel parents can work together. Does it mean you have to get along? Nope, but the constant bashing and bickering, while the passion is good, does nothing to advance the cause. In fact, it hurts it. I've made no bones about it, I've let the folks at the ASF and FAST(their officials) know on back channels, that they need to put their foot down. Its your battle now. My family's battle is over. We will be more than happy to help out any angel family, to do what we can. Yet the bickering is causing tears and pain across this place we call Earth. We all have a common enemy. Angelman Syndrome. Instead of tearing apart each other, what do you say, its time we kick AS's ass?