With a Bright Yellow School Bus, Tommy's Spirit Lives On

As a high school student, I was the type of guy, that administrators and teachers would mark present, even if I wasn't there. While I did enjoy school, mostly to check out the girls who were in my classes, my best subjects were recess and lunch. There were great teachers, including a history teacher, who was also one of the football coaches. I never had a problem paying attention to him, after falling asleep one day. This grossly overdeveloped man, kicked my desk from underneath my gross underdeveloped body, and was known to also throw erasers and chalk at students who snoozed. He was actually a fantastic teacher, and it was due to him that I discovered a love of History, and sort of turned out okay. While a lot of days I would be out at a local park playing volleyball, or eating off campus which was a big "no-no", Tommy loved school more than any person I have ever seen.

Each day started off with the bright yellow school bus, that would show up at our door around 8:30 a.m. My mother-in-law, used to sing to him as it arrived, and my boy would smile a grin that was a country mile wide. These are the memories that I like to cling to, as they remind me of a simple joy, that Tommy loved from Monday to Friday. His first driver was a former nurse, and all of his drivers were fantastic. They loved him, although I do not think they could love him, as much as he did them. You could just see it in his eyes, as he would light up when the bus turned the corner on our street each morning. The driver and aide would greet Tommy, and his arms would flap up and down, with his trademark smile and laughter. As the loading ramp would come down, Tommy would get even more excited, and we'd stand there and watch him on the bus bouncing around.

It seems like a lot longer, than a year and a half ago, that he went to God. The night of November 4th 2009 shall never be forgotten, but it is with a smile, that I remember Tommy's joy seeing that bus every morning. One of the best memories is his bus driver singing "Happy Birthday" to him over the public address system. Tommy smiled and laughed, and as he loved music, he loved the crooning bus driver's singing. The "Wheels on the bus go round and round" is a song loved by kids, and even by adults that haven't "grown up" yet. Everytime I hear this song, or sing it to Tommy's younger brother, I think about our boy. I know he's with God, who's love is endless, and while I have yet to see a Biblical passage that describes buses, I am sure that all is possible in Heaven.

Quite regularly, I run into Tommy's bus drivers and aides. They meant a lot to me when Tommy was alive, and they still do. I consider them to be family members, and sometimes I see one of Tommy's buses still going on down the road. Sometimes I look at it, with both sadness and happiness, as strange as that sounds, and look at where Tommy used to sit. It was always on the driver's side, and close to the back. Often I picture what he would look like right now, as what would be his seventh birthday is coming up in July. Instead of pain, I have to smile looking at those buses. I've seen them parked and touched them, even rubbed my hands by the window that Tommy used to sit in. It brings back good memories, and everytime I see a yellow school bus, I have to think about him smiling in Heaven, with God at the steering wheel.

Suck Feizures Buttons: Show Off Your Support and Help Destroy Seizures

Millions of people worldwide are affected by epilepsy, and its high time that a cure for this condition is discovered. There have been exciting developments, such as what the folks at Vanderbilt University's Kennedy Center have been working on, but its time that parents and children alike can rejoice with celebration. Too many have lost their lives to epilepsy,  and those who must contend with it on a daily basis are counting on us. That's right, while they fight we must join them on this endeavor, and bring them the relief that they deserve. It is a matter of a moral cause, and instead of shirking from seizures, its better to battle against them standing up.

"Suck Feizures," is an obvious play on words, yet it is what the parents of children with epilepsy feel about seizures. We are sick of watching our children suffer, have their developmental milestones hampered, and their lives to end far too quickly. I along with many know this firsthand, as I have buried my own son, who went to God at age five. I have no anger towards God, who's love is endless, but I do have a serious problem with seizures, and will stop at nothing to watch their demise become a reality. That's how the facebook group "Suck Feizures" was started, and how shirts, stickers, and now buttons have been created to help Vanderbilt's folks get closer to the finish line for a cure.

Go to http://happyangels.ecrater.com/, and see the cool buttons you can purchase. Each one bought helps with research at Vanderbilt Kennedy Center, and is a fine reminder of the aggression that's being waged against seizures. Suck Feizures is a strong statement, which is an embodiment of those folks who are fighting seizures, and those who love family members have that a condition that causes them. A purchase from this wonderful site on the Internet, started by a loving soul named Carmelita, will go a long way to both generate awareness and assist researchers. This is an effort from the heart, and I would like to personally thank Carmelita, and all of those who have been standing firm instead of sitting back. "All it takes is good folks to nothing, for seizures to succeed." That slightly altered version of what Edmund Burke said over two hundred years ago, is the truth in this matter. Now its time for you to decide, do you want to help a good cause by fighting with love, or just hope for something to happen? The first one is the only option, and I hope you will check out http://happyangels.ecrater.com/ to be a part, of the fight that is being done with compassion, kindness, love, mixed in with determination for good measure.

An Angel Hug Means the World to a Grieving Father

This past weekend I attended the D.C. area Angelman Walk in Columbia, Maryland, and it was such a beautiful day. That song from U2 was played over the stereo speakers, and this is the second year in a row that I've been without my son Tommy. He passed away from a Angelman Syndrome related seizure on November 4th, 2009, and as Coach Tony Dungy so eloquently described, "I'm still grieving." The night before there were a lot of tears, and as I pulled up to the event, they poured out once again. We each have a burden to wear, a cross to bear, and it was with trepidation that marked the start of this event. I saw a lot of angels, and their smiles and laughter reminded me of Tommy. Yet what really made me smile, and cry at the same time, was a hug from Angel Jenna.

If you do not believe in the power of a innocent hug, from a little girl like Jenna, my heart feels sorrow for you. At the end of the event, I got numerous hugs from her, played high five, and she even made that silly "Native American" wo wo wo wo noise, with her hand above her mouth. She made me just grin, and it was so powerful. Every bit of sadness just went out the window, and I cannot properly put into words, how happy those hugs made me feel. It was food for the soul, and a spiritual experience, that reminds me of God's love for all human beings. Those moments were special, and a reminder of the love Tommy had in his heart, while showing everyone what is really important in life. That is the simple joys of a powerful hug, that tugs at your heart strings, and reminds you to carry on. We face adversity each and everyday, as soon as the alarm clock wakes us up, but this moment was a sweet ending to a great day.

I would like to thank Jenna's family, which is a loving group, and their dancing and singing skills made the Angelman Walk a real hit. Yet what I am most thankful for, are those few minutes with Jenna. I have faith in God, that one day, when I've hopefully passed the century mark, that I will see Tommy again. Everyday I think about him, and while I am saddened by his passing, I am inspired to stand strong, as he did his entire life. Right now I have tears streaming down my face, yet I also am wearing a smile, because Jenna brought a whole bunch of positive energy from those hugs and high fives. If you haven't been to an Angelman Syndrome event, or have met an angel, go out there and get a hug. You'll see what I'm writing here, as its a spiritual event that reminds you of the love of God, because even though we go through trials and tribulations, a hug from an angel helps you endure them. God bless you Jenna, and thank you!

AOE-Angels on Earth: A Place to Support Angelman Syndrome

Although Kelly aka "Texas Tornado" lives in the Lonestar State, far away from the confines of the Commonwealth of Virginia, she has a fine store that you all should check out. Its called AOE-Angels on Earth, and has done an abundance of good to raise awareness about Angelman Syndrome, along with providing fine merchandise. While I'm obviously a fan of the "Tommy Collection" for obvious reasons, I like all of her designs. Her son Kiano has Angelman Syndrome, so you know that her work comes straight from the heart. She is a warm, kind lady, who has meant a lot to many families, and I can assure you with every bit of my conscience, that her store is a retailer you can trust on the Internet.

Geography nor distances separate the love of God, which is infinite, and she is an inspiring person who doesn't believe in "tossing in the towel of defeat." Instead, she wants to fight seizures head on, along with raising awareness for Angelman Syndrome, with the heart of a prizefighter that won't be tko'ed. That's right, she's going all twelve rounds, and then some. If you get a chance, be sure to check out http://www.angelsonearth.net/default.html. This is a fine place to get merchandise that makes a difference for so many, and her artwork is among the best that I've seen. Unfortunately, I don't think my stick figure designs will qualify, but her graphics are of premium quality that cannot be replicated.

So what are you waiting for? Just click on the link http://www.angelsonearth.net/default.html. AOE is a fine company, that delivers the goods. You will find everything from shirts to jewelry, along with information about Angelman Syndrome, including references and sources that might answer questions about this medical condition. That's a winning proposition, and I would personally like to thank Kelly for her support, along with her willingness to help Vanderbilt University's Kennedy Center. They are doing great research with regards to seizure activity, that might lead to developments not just for those with Angelman Syndrome, but other medical conditions with epilepsy as a component. God bless you Kelly, and I am thrilled by my t-shirt, and wear it with pride. It has taken a lot of abuse, and looks as good as new after days in the woods or being put in the washing machine a million times. The water bill might be high, and the electric company might make me scream, but that shirt can take a licking and keep on ticking. AOE was created by an angel on Earth, for angels on Earth.

Heroes in Research: Dr. Edwin Weeber

I often joke with my doctor, "Were you last in the class, because I still have to call you doctor right?" He thankfully has a good sense of humor, and when he told me "You need to lose some weight," my response of "isn't that both of us?" provided him a chuckle. Doctors across the world are working in molecular pharmacology, which is a real tongue twister. Yet there is one that deserve kudos, and that's none other than Dr. Edwin Weeber. http://hsccf.health.usf.edu/researchDirectoryTemplate/depttemplate.cfm?&person_id=42285&deptid=28. He has been working with mice, and has been able to genetically modify them to have Angelman Syndrome, and cure it. That is a huge deal, because as we all know, this discovery is going to lead to the ultimate breakthrough. This is not only for Angelman Syndrome, but other chromosome related disorders, as well as providing new ways to get rid of seizures.

Dr. Weeber's information is provided in that link up above, and I plan on writing him a thank you letter, for his hard work and dedication to a noble endeavor. If you can, I am sure that he would be appreciative, because his work is groundbreaking. God has provided him with an intellect and resolve to go through hours of tedious experiments, that are providing hope, and one day will help stop seizures and cure Angelman Syndrome and other medical conditions. He is a hero, because of his level of dedication to the cause. Kudos to Dr. Weeber, and best of luck with your work, because a lot of folks are counting on you to cross that finish line!

Liberty Medical's and Walrus Extraordinaire Wilford "Diabeetus" Brimley Talks About Seizures

**disclaimer: To avoid the law firm of Dewey, Cheatem, and Howe from suing me, I want to first admit this is a fake interview. While I would love to hang out with Wilford "Diabeetus" Brimley, who's most famous from the Liberty Medical ads, being a curmudgeonly grandfather in movies, and getting his stomach kicked in the Firm, I have yet to meet the man who seems able to Mortal Kombat Shao Khan style morph into a cat or walrus. Diabetes is a serious medical condition, that has affected family members, and I only have "fun" with how Brimley pronounces it, as he calls it "diabeetus", but to his credit he has been involved for years with research and awareness. So without further adieu, its time for me to sit down and describe with Mr. Beetus himself, the importance of destroying seizures, which have caused so much pain for those who live with it, those who love someone with them, and those who've lost their lives far too early from them. A cure for seizures must be found.

Mike Ross: M/ Mr. B-Wiford "Beetus" Brimley

Interview with Wilford "Beetus" Brimley

I'll admit I was a bit nervous, as I've been in awe of Wilford Brimley for a long time. Getting to meet one of my heroes, caused me to perspire, and I hoped that the Tag brand deodorant that I borrowed from a teenager, wouldn't cause all of those women from the commercials to interfere with our interview. This was conducted in Florida, at Liberty Medicals Corporate Office. For years, I had been comforted by Mr. Beetus, because just like the Sun rises from the East and sets in the West, his "diabeetus" commercials are going to be aired on "The Price is Right". These commercials, where he is wearing a red or blue sweater, remind me of a twenty first century version of a fireside chat, and its great being able to get such inspiration while watching them, in a pair of pajamas and eating my daily rations of Fruit Loops. Mr. Beetus was late, as apparently he had another issue on his Segway, yet when he walked in the door I realized that he was an alpha male that I would have a difficult time contending with. It was going to be impossible, to be a fair and balanced journalist, as this legend walked in with that red sweater.

M: "Its so nice to meet you Mr. Brimley, thank you for sitting down for this interview".

Mr.B "Whatever ya whippersnapper. You say I have this ability to transform into a cat or a walrus. You think you can get by me? Yeah I might be so old that I need carbon dating, but I'm still one bad dude, who could launch you through the window at a moment's notice."

M: "You have a lot of aggression Mr.B."

Mr. B: "Yeah, yeah, whatever. You know what, I shoed fifteen horses on my farm today, and no I didn't do what that knucklehead did in the movie Kingpin either. From what you've seen on the Liberty commercials, you know I have the right stuff."

M: "What irritates you Sir?"

Mr. B: "You do for one, but what really gets my skin crawling, like there's a bunch of Texas fire ants, is my grandkids. They are always over at my ranch, screwing up my G scale trainset, switching all of the clocks that are perfectly aligned with atomic time, you saying that I got "owned" in the movie The Firm, and people making fun of the old style conductor hat that I wear off the set. Some say that it makes me look like a dirty old man."

M: "That's a lot of stuff Mr. B. While I appreciate all of your efforts with diabetes, what do you think of epilepsy."

Mr.B "Well I think its time we go medieval on them, like Marcellus did in the movie Pulp Fiction. "

M: "That's a good way of putting it, but aren't you impressed with Dr. Weeber's work with mice?"

Mr. B "Work with vermin? Where's my .243 rifle, I'll shoot those vermin with perfect aim, getting rid of those pests in just a second with the click of my ol reliable."

M: "Mr. B, Dr. Weeber is working with mice as part of a medical study. He has been able to genetically modify them, so that they have Angelman Syndrome, and then he's been able to cure it. Other researchers have been able to use mice for epilepsy treatments, and understanding how electrical signals to the brain are abnormal, thus causing seizures."

Mr. B "Well, you young haystack, perhaps there's not as much straw in your cerebral cortex, as I thought there was prior to this what you call interview. That is great, and I'm happy to see that research into epilepsy and other conditions is moving at a quick pace. Those rats can be used for something useful, so I'll put down my firearm, and let them do what they do then."

M: "Thank you Mr. B. What do you think of the work Vanderbilt University is doing with regards to seizures?"

Mr. B "They did a fine job in the NCAA tournament a few years back. I was sitting at home in my drawers watching them on my television with bunny ears. It was great sitting there with my chewing tobacco, bottle of Pabst Blue Ribbon, and just seeing real men kicking that other team into submission."

M: "Mr. B, its great that you are a fan of college basketball, but this is about what Vanderbilt University's Kennedy Center is doing with seizure research."

Mr. B. "What are they doing, because I just did some research on my farm, and it led to me being able to get my Hover Round up to Mach 1".

M: "They have a seizure research project, that is going to first lead to a combination of medications that will stop seizures from occuring. This will help parents who love their children with Angelman Syndrome, and other conditions, from seeing their kids seizing up, or ultimately losing their lives to seizures. Then, they are going to proceed on a sequence that will eliminate seizures forever. They are famous, recently you perhaps saw Darius Rucker perform on stage on their behalf, with a bunch of young men and women that understand courage."

Mr. B "I saw that, Darius Rucker as you would say in this generation, "rocked the grain silo". That's great that Vanderbilt is doing something other than playing basketball, that they are involved in trying to find a cure for seizures. While I'm being forced to wear these horrible cardigans for Liberty Medical, and being made fun of on Youtube, Vanderbilt's Kennedy Center is doing something admirable. By the way, did you know that I got game with the ladies?"

M: "That's nice, Mr. B."

Mr. B "Yeah, I have conga lines of women knocking at my door constantly. That little blue pill has been a real hit, and when I get on the dance floor and do the electric slide, all the gals from the AARP are throwing their cards at me. I'm like the new Tom Jones."

M: "Mr. B, props! Yet what do you think of a Facebook Group called "Suck Feizures", that's working to get rid of seizures forever?

Mr. B " I think it sounds like a crude version of that Cee Lo song that's on the dance floor. Last week, I had a slight acccident on my Hoverround. Apparently I had a "few too many," and crashed the dance floor. That's what the song said to do"

M: "This interview doesn't seem to be going anywhere productive. Any thing you want to say about seizures, and epilepsy for that matter, before you get back to those wild ladies from the AARP?"

Mr. B: "Yeah, I'd like to say that seizures need to be crushed, just like I used to be able to do with a cantelope in my bare hands. There are too many families that need a cure right now, and folks with seizures who would be doing so much better, if they didn't have to contend with them. I hope there's a cure before the next harvest moon".

M: "Thank you Mr. B"

With that the "Beetus" himself walked out of the room. He didn't seem to acknowledge my presence, because his stud level is so high, that he just didn't need to. There were no handshakes, and no thank you's, but I was not disappointed. Just having a few minutes in the same room with "Beetus" was an experience that I'll never forget. The way he carries himself, well its just as manly as you can get, and from what the folks at Liberty told me, he was planning on jogging on the beach to show the ladies that he's "still got game." Apparently, he wears nothing but a small banana hammock style speedo, and runs on the beach like that scene in the movie "Rocky III." While perhaps we do not need to run on the beach, a race for the cure against seizures is going on right now, and that needs to be done with all haste. There are so many in need, and just like Mr. Beetus, let's get the cure before the next harvest moon. :)

Thank you Belgium, Denmark, India, Iran, Jordan, Latvia, Mexico, Phillipines, Turkey, and Vietnam!

The fight against seizures is a global effort, as epilepsy does not discriminate, no matter what country you live in or religion you consider to be your faith. We all have something that unites us, and that is a willingness to get rid of seizures forever. When starting this blog back in January, I had no idea of the global reach that it would have. So many folks from countries across the world are reading this, or following it, and I cannot thank you enough. While I think of my boy Tommy everyday, who passed away from an Angelman Syndrome related seizure in 2009, I also think of the kindness across the globe. It is an honor to welcome folks from the countries of Belgium, Denmark, India, Iran, Jordan, Latvia, Mexico, Phillipines, Turkey, and Vietnam. According to Google's Audience feature on this blog, kind folks from these countries are reading this blog.

Living in the D.C. area, I love the diversity of the area, as I've met people from these countries. Its fascinating to learn about different cultures, along with history, music, food, and to share fellowship with people from far away lands. Although the blog might not be as personal as a face to face cup of tea, or exchanging of recipes, nonetheless I cannot say thank you enough to those who are reading this. We have so much in common, as we are all related to each other. Its not going to be exclusively a one country effort, rather its going to require international collaboration to find a cure for seizures. Through this, perhaps the world can be a better place, as we can all celebrate something so beautiful, pure, and worthwhile of blood, sweat, and tears through actions of love.

Thank you to all the decent folks from these countries, who are reading this blog. Peace be with you, and your families and friends, whom will be instrumental in stopping these seizures from shattering so many lives. We are separated by borders, and sometimes governments that get in the way of our efforts to find a cure, but by the grace of God we are in this to win it. Our hearts are all in the same place, and I'm grateful for all of you, along with hoping that the folks at the Angelman Syndrome Foundation and Vanderbilt Kennedy Center, with our research institutes, will find that cure sooner rather than later. We must improve the lives of all people with seizures, by finding that cure that's within our grasp.

The Angelman Walk 5/21/2011

Well, the end of the world didn't happen thankfully, and its a good thing I didn't buy a Maserati and drive it until 6 p.m just in case. I don't think you can return one of their sportscars after three days, like so many dealers offer for customers. Instead of awaiting for the eminent doom of Earth in my bunker full of twinkies and cheap beer, I was in the beautiful town of Columbia, MD this morning, with hundreds of great people supporting the Angelman Syndrome Foundation. (http://www.angelman.org/) The ASF, supports awareness, research for a cure, and ways to battle seizures associated with this condition, which affects roughly 1 in 15,000 births. Last years event took an emotional toll, as in 2009 my son Tommy passed away from a seizure, but this year there were plenty of laughs, including a perfect ending involving a robin.

In case you were wondering why there's a picture of that bird here, that will be explained, but first you have to get through the rest of this prose. Today's occasion was a joyful one, as while I know in my heart that Tommy is in Heaven with a loving God, I saw plenty of "angels" that provided so many hugs and loads of love. I still have a goofy grin on my mug from today, as Angelman families have been a strong foundation through so much, and we really do come together at these events and elsewhere. There were acts of compassion, and while the event coordinator didn't do "the Dougie dance," perhaps next year there will be a way to make that happen. You know who you are, and just like John Wall of the Washington Wizards, you are able to do these moves but just don't want to admit it.

The weather cooperated, and seeing so many Angelman families and loved ones complete the walk, was inspiring and it appears that more people are involved every year. In addition to Columbia, MD, which is not to be confused with Medellin, there are walk locations all over the United States. This years purple shirts are cool as that is the color of epilepsy awareness, although my initial reaction was "I'm going to be the bald headed version of Barney the dinosaur." All kidding aside, the color was fine, and I will proudly don my new shirt and wear it with pride. Families spent time with each other, and there was delicious Italian ice donated from a kind sponsor, along with a dance and karaoke event.

After the event was over, a young lady approached me, and said that there were baby birds being born. Sure enough, a robin's three hatchlings were cracking through their blue eggs, and their mom was bringing them a delicious entree of worms. It was the perfect ending of a day, to see these just born chicks opening their mouths, anticipating a good meal from their mother. This reminded me of the love that so many Angel parents have for their boys and girls, along with how the Angelman Syndrome Foundation is making a leap from the nest, to find a cure for this condition. God willing this shall be the case, as while it makes sense to look before jumping, I have full confidence that this organization is getting ready to spread its wings even further.

The Angelman Syndrome Foundation Walk: May 21st Be There!!!!

The Angelman Syndrome Foundation has the HIGHEST rating from Charity Navigator. That's right, they have hit the gold standard, and unlike some municipalities bond ratings, you do not have to worry about your generous donations going to waste. Former Prince George's County Maryland's Executive's wife, is not stuffing cash down her brassiere, or flushing checks down the toilet. The money raised is not going to Arnold's newly discovered child's slush fund, or to feed the dope habit of meth addicts on the street. No, there will be no Oliver North shredding going on, nor will there be any nonsense administrative costs, that are part of so many other charities.

Wouldn't you like to be a part of something special? If you have a child or loved one with Angelman Syndrome, you know firsthand that the ASF is fantastic. They are generating so much awareness, that you do not have to explain this condition to doctors anymore, and those of us with chrome domes, have an idea of what it is. There will be no stretching of the cerebral cortex, as folks who have learned what Angelman Syndrome is, have an appreciation for angels, and this foundation that started with humble beginnings. Thanks to Brian Harvey, a former relief pitcher of the Angels who I used to root against when he was against my beloved Boston Red Sox, this group got started. I don't think its a coincidence that he played for the Angels either, although I would have love to seen him throwing those 95 mph pitches for the Beantown boys.

In two days, that's right, May 21st the Angelman Syndrome Foundation will have events across the United States. Every year, the number of locations is growing, and unlike my chrome dome, it shows the potential to be in even more spots with each changing of the calendar. Its not too late to go, and while you may not get your walk t-shirt as the deadline has passed, get your tail movin' and get groovin'. That's right, get off your couch with that box of twinkies, walk a couple of miles, help a good cause, and get the best reward. This would be a hug from an angel. Years ago when I was devastated about my son's diagnosis, I got a hug from an angel named Dana. I cried so much on that first walk, but that hug brought nothing but smiles, the type that you can't get with any prize or anything else for that matter.

For those of you going to the Columbia, MD event. Yes, it is in the People's Republic of Maryland, but it is a bastion of love and joy on this momentous day. For those of you who live in VA, DC, MD, or other areas, don't make me call out Gunnery Sgt. Hartman aka Ermey from the movie "Full Metal Jacket" to wake you up by banging on a metal trashcan. Take the trek, you'll see an amazing event, that's full of joy, compassion, and a dedication to a great cause. While I am not going to wax my chest for this charity, I will be more than happy to sing you a tune, even if I got kicked off the church choir :). For more information, go to http://www.angelman.org/. Be there or be square!

The Fear of Losing a Child With Angelman Syndrome

I just watched a video, that showed a mother of a child with Angelman Syndrome, state her concerns about losing her daughter to seizures. While the majority of "Angels" do live generally long lives, the reality of what she said is true. There's no study that I am aware of, that shows the percentages of angels who will lose their lives to seizures, but I know of quite a few. One is too many, yet too many have their lives cut short by seizures, that leave their families in sheer pain and despair. I've been there. My son lies six feet deep, in a cemetery with a tree that overlooks his gravestone. Right now, he would almost be seven years old, but a seizure didn't allow for that possibility. He will not continue going to school that he loved, or hear a bus driver sing "Happy Birthday Tommy" over the public address system.

Sometimes I stop by his plot, and just cannot stop weeping. Its been over a year and a half, and I will never get over it. I hurt for him, for my wife, his grandparents, relatives, friends, teachers, and for myself. My heart is so heavy, and there's been feelings of angst, guilt, and of pain that sometimes seems to be a burden too much to handle. Hearing of another family, whom I do not even know losing a child, or contending with seizures, causes me to cry buckets of tears. That is okay, but I dream of a day when a father does not have to carry his son or daughter's coffin, and watch it close upon their little one. I think about the mother, whom gave birth to this child, giving them a kiss before sending them to their grave. It is so unfair, that a parent has to bury a child, because it is supposed to be the other way.

Many share this same journey, and I am thankful for these kindred spirits. Its faith in a loving God, and these folks whom have showed me a new road in life. The pain is always there, like a dark cloud that refuses to stop chasing me, but to give up and accept defeat, that is simply not going to happen. Although there is pain, that has ripped through my soul, there are other parents and families that do not deserve the same fate. None of us are perfect, but no one deserves to bury their child, and by getting folks like the Vanderbilt University Kennedy Center help, then perhaps we can save someone from this soul shattering experience. Quite a few Angelman families and others have lost their child to seizures, and we must prevent them from such a horror. Please pray that a cure for these seizures can be discovered, and if you can find the time, do what you can to help Vanderbilt make the breakthrough that will stop the faucet of grief.

Signs of Purpose-A Noble Cause That Helps Fight Seizures

If you want to show your support and solidarity, to those who contend with seizures caused by an array of epilepsy conditions, I can think of none better than a "Suck Feizures" sticker on the back of your car. Do you like cool designs, that are truly inspired by the heart, which is full of blood, sweat, and tears for a good cause? If so, check out http://home.signsofpurpose.com/. Here is where you can get stickers and signs from a kind lady named Bridget, who custom designs these in a variety of sizes. "Suck Feizures" is a strong statement, not out of anger against God or those who suffer from them, but rather it is a battle cry against seizures. My five year old son Tommy lost his life due to seizures, and so many other children have as well. Others have had their cognitive abilities and enjoyment thrown a lightning bolt from this menace, which must be stopped NOW.

Each "Suck Feizures" sticker from http://home.signsofpurpose.com/ helps Vanderbilt University's Kennedy Center Seizure Research project. Its a win-win. You get a cool looking sticker, of which I have ordered and am impressed with the quality, along with helping a noble cause, that God willing will provide help for those who have been through so much pain. The colors of the stickers are incredible, as you can pick from every spectrum of the rainbow, and make a statement that you are a fighter. Your car will say "I stand", instead of sitting down in misery, just wishing instead of taking these seizures head on. Remember what the Grandpa said in "Grumpy Old Men". That was, "You can wish in one hand, and crap in the other, and see which one gets filled first." Burgess Meredith's lines were not eloquent by any means, but one cannot argue with his reasoning.

Everyday, there is a child or adult suffering from seizures. I have buried my son, and while it is painful, I have faith in God and the good works being done by folks like Bridget. She is taking a stand, and I hope that you will as well, because while nothing in life is guaranteed, the very least you can do is fight. The sting of battle is what we all should be participating in, because when we destroy seizures, we shall have the biggest party ever. That day is in sight, its sooner rather than later, as the Vanderbilt team and others are working furiously to get the cure so many hope for. Epilepsy affects millions of people across the world, and seizures do not discriminate. Let's stand united, and with a reason. Signs of Purpose does that, and their site at http://home.signsofpurpose.com/ is a much needed boxing glove in eliminating the menace of seizures.

Suck Feizures: A Strong Facebook Group That's Against Seizures

Suck Feizures, is the name of a Facebook group, that was started in January 2011. Yes, you reverse the first letters of each word, and its how a lot of folks feel about seizures. My son Tommy died at age five from a seizure caused by his Angelman Syndrome condition, and sadly, there are so many more children that have lost their lives far too early. Not all of us are going to make it until 100 years old, smoking cigars and drinking fine brandy, like George Burns did "back in the day." Its not the number of years that you live, but rather how you enjoy every day, but its time for children especially, to stop being buried by their parents.

There's no way to describe the pain, of preparing your child's clothes, for him to wear in his casket. Carrying my son's coffin out to that white hearse, was a gut wrenching experience that I hope others will never have to go through. To shovel dirt onto this coffin, which was placed six feet deep, is something that simply cannot be forgotten. I am comforted knowing that God's taking care of him, but each day is a reminder that other parents are facing a similar challenge. There are parents right now, riding in an ambulance with their child, who's seizures are forcing them to be hospitalized. Another parent is finding their child non-responsive in their bed, and having to do CPR until the paramedics arrive. Thousands of people, many of them children, die each year from seizures.

There have been advances in medicine, along with an awareness of epilepsy, that seems to increase each year. Yet, children are dying, and for that reason alone, "Suck Feizures" was born. There is no animosity towards God, against other people, but rather there is hostility against seizures. They must be stopped in their tracks, and while medicines have come a long way, they certainly did not save my son's life or a lot of other children. Their parents are left with profound grief, often wondering "IF?" Its time we get rid of the "IF", and start kicking these seizures to the curb, with no remorse. Call it what you want, the gloves coming off, but instead of the sidelines would you not like to make a difference?

You do not have to be a "Mother Theresa" or some bold individual, but rather "Suck Feizures" as a facebook group is ordinary people, from numerous backgrounds, who want to eliminate the scourge of seizures forever. As a father, I have to say that Tony Dungy's discussion about his son's passing is right, and that is "I'm still grieving." Yet, "Suck Feizures" has allowed me to go on the offensive with other people of compassion, who know that we must find a cure. We have thus far been able to help Vanderbilt University's Kennedy Center, along with providing support for each other. The "Suck Feizures" facebook group, is a fine place to learn about developing news in the field, and to learn about new treatments that show promise.

Suck Feizures is strong, but so is our cause. It is a noble one, with people committed to destroying seizures. Wouldn't you like to be a part of something special like this? Its free, all you have to do is go to facebook and type in "Suck Feizures", and request to join. Someone will open the online door for you, and everyone is friendly and welcoming. If you have concerns, feel free to share them, because while we are not necessarily related by blood, we are a family. We have a common purpose, and a lot of shared pain, but also collective smiles and a willingness to go the extra mile for a cure. Suck Feizures! Let's find that cure!

A Young Lady's Resilience and Love Inspires

"A loving heart is the beginning of all knowledge."-Thomas Carlyle


Epilepsy affects millions of people, with devastating consequences to families across the world. Those who experience this know firsthand of the pain that it causes, and those who love them are faced with an array of issues. Yet there's a shining light in upstate New York, that knows the value of love, courage, and how its all tied together. Kelsey lives in a small town, with a family who deeply loves her, yet it is she who has taught them the true meaning of love. Love. This word is used so often, that you could find millions of Hallmark cards with it enscribed in them. People say "I love a football team," or "Love this weather!" Yet that is not true love, which is filled with courage and a determination to help others.

Kelsey is a fifteen year old young lady, whom I admire, because she has the mindset described aptly by General George S. Patton. That is "better to fight for something than live for nothing." This brave soul has defied the odds, battling seizures that have caused her immense pain. Even with this, she is an honor roll student, and has helped her younger brother and countless others. This was because she discovered God, which is love in the highest form, and taught this to her family. She has continued to spread this message of love, even while dealing with seizures, and not giving up. Her church and other youth have learned about being a champion from her, and dealing with adversity with an "I can do" attitude, which is much easier to say than actually do. Yet Kelsey has done this, and shown a remarkable level of resilience that you just cannot put into a bottle.

I want to personally thank Kelsey. Her story has deeply moved me, and made my week so much better, through both tears and smiles. As an imperfect man in an imperfect world, she makes me want to be a more kind person, that's willing to love people even more. It is easier to look at the negative things in life, yet she is right about focusing on what is decent and never giving up. Kelsey, keep doing what you are doing, because your family, and now a whole bunch of people are proud of you. You have strengthened my faith, and that of others. By the grace of God, we shall find a cure for seizures, but until that time comes keep kicking down doors and showing what true love is. Its a lesson that is of importance, and a reminder that love and courage can be combined.

The Shenandoah River Rises and Falls, Yet Calm Ultimately Prevails

This past weekend it was an honor to spend time with great friends, on the banks of the Shenandoah River camping. To be a part of the outdoors, is a reminder of the beautiful canvas that God laid out for us, and that there's a lot more than our egos, baggage, and drama which we all carry. The clear waters were higher than normal, but the waters had receded from a storm several weeks back. Trees were still where they should not have been, and the campground staff gave us a detailed picture of what kind of damage they had sustained. The river's fury ripped apart numerous pieces of equipment, including a playground, with water lapping at houses on the embankment over two hundred yards away from the basin. Through hard work, that required day and night effort, the staff was able to clean up the campgrounds enough for people to spend time there.

One of the staff called the river "angry," during this period, and this analogy seems a bit harsh. Looking at its majestic beauty, I found it difficult to attach an aggressive term to the Shenandoah River, which has numerous explanations for the origin of its name. This same spot we were in is known for being a habitat for Bald Eagles, and is a place of refuge for city folks, who want to remember what stars in the sky not being blocked by lights look like. I like the river being a reminder of life in general, as there are times when the current is not to our liking, yet it ultimately recedes, bringing new landscape and infinite possibilities. Although a lot of the weekend was fun, there were periods of reflections, about the battle to find a cure for seizures.

A lot of folks who have epilepsy, or those who love people with seizures, might be able to relate to the river. Some days are smooth, yet others are full of horror, with angst caused by the fury. The flow of life and water alike are so similar, as is the race to find a cure for seizures. There have been ups and downs along the journey for this cure, but ultimately the waters shall clear. The anger will dissipate, and even though being on a boat in these waters is a challenge that could best be described as trials and tribulations, a cure for seizures must be found. Too many people are in a lifeboat right now, hanging on for dear life. We need for their waters to calm down, which can only be done with the love of God and the guidance He provides researchers working tirelessly. As we flow down the river, may He provide us a lifejacket.