Fighting Seizures: Don't Undermine Organizations Working on Cures

In the battle against seizures, it is much like a war, in that groups and parties of different views have to make alliances. It would be simple to say "its my way or the highway," but in reality, folks contending with epilepsy have to work together. The underlying medical condition causing seizures doesn't matter, whether its Angelman Syndrome, Rett Syndrome, Generalized Epilepsy or any other name. These are mere labels, diagnoses that are useful in medical corridors, but not so much when it comes to serving on the front lines. These are a public venue, and while not everyone is going to get along, or be "buddy buddy," what does matter is that we are on the same page. If General Patton of the US and General Montgomery of the British during WWII could at least see eye to eye on some levels, then by the grace of all common sense, then the rest of us can with regards to organizations. It does not matter what the organization is, what matters is that it is working on a common enemy, and that is the seizures that continue to negatively affect so many people, along with causing deaths of children and adults across the world.

Sadly a few individuals like to bite the hands, of organizations that are going to great lengths, to combat seizures and other medical conditions. If you constantly want to badger them, you are nothing but a parasite, and your help is not needed. We all make mistakes. I make a lot of them. Yet I do not constantly smash an organization, by under minding their efforts. If I have a concern, I confront a person directly, or through a phone call, or a private message/email. Only if I have proof, empirical evidence that shows clear, convincing, and untainted negligence, would I ever go public. That would be with an arsenal of lawyers in a civil case, or law enforcement in a criminal case. For those who "screw with special needs kids," I will not hold back, and in one case while the effort went too far, I am happy to report that changes have been made. In fact, kids with special needs are being treated better than ever before. It was an imperfect battle, but the war was won.

Yet charities, 503b's, have enough headaches to contend with, than being bashed around with nefarious activities.Any charity that helps kids in need, should not have to deal with a bunch of miscreants, miserable creatures that try to suck every ounce of blood from them. Its a self defeating strategy, and a complete sign of weakness. Imagine if during WWII the Americans, British, and Russians decided to "screw with each other." They'd be playing right into the hands of Hitler's evil machinery. Instead, they worked on the same page, even though they did have some differences. As adults, it makes sense when we see an issue, to bring it up to a person or group we have a problem with, in a manner that is not detrimental to hurting families and their children at need. Any other course of action, is cowardice, and should be treated as such. You can pick what charity you support, and by all means please do. There is work to be done, and it must be done with haste, because a cure for kids with all kinds of medical conditions, needs to be found. The seizures must abate, before we lose another child.

It is too late for my son. Yet it breaks my heart, when I see grown ups, using their kids as pawns, in some sort of dumb chess game, that is going to end in a loss for everyone. We all have dirt under our fingernails, but the time for finger pointing is over. Facebook and other social media are fantastic tools, when used appropriately, and for parents just learning that their child has a medical condition, they rely on charity pages to determine what the best course of action is, as well as getting information to help their little girl or boy. Its more than okay to be angry with someone, or if you don't like an organization, to leave it. By all means. Yet to trash it day on, day out, night after night, it becomes akin to being that bloodsucking leech that offers nothing of significant value. So its up to you, to be a champion that rises to the challenge of the war for a cure, or a loser of everything that we hold to be sacred.

Communion: It is an Emotional Experience

Sometimes its necessary to take a break from everything in life. Today, it was also a pleasure, to return to church and find a place of peace. There are so many decent folks at Bethlehem Lutheran in Annandale, VA, and it was joyous to return to this place of worship after a recent knee surgery. Simply put, I missed it, whether the people that are in the congregation, or just getting down on my knees to accept Communion. Going to church is a very emotional experience for me, and I am not ashamed to say, that tears often flow down my cheeks. It is not a mark of weakness, but rather strength, in understanding that I am far from perfect, and yet even as a screw up in so many regards, I am loved by people, and Jesus. Many times I wish my faith could be stronger, as I wrestle with it often, and it leads to frustration. Yet today there was none of that, but actual reflection about the past few years, along with prayers for people who truly deserve them.

There are many times, that I think, well if Jesus is real, why doesn't he just show up on the White House lawn? Its that skeptical side, because just like everything in life, if I don't see it I don't believe it. Yet I feel His presence. It is most certainly there, and times like today, its in every bone of my body. The most compelling time is Communion. That common refrain of "not showing up for some 2012 years," dissipates into thin air, as I feel something that I simply cannot explain. Many times when Pastor Gerry puts up that bread, "eat this to remember me by," and that chalice of wine "Drink this to complete my covenant," I feel something in the air that is so electric that it moves me to tears. I think of the visual pain displayed in "The Passion of the Christ," a movie that I fully recommend.

So mysterious life is. There's just so much, that we simply don't know. It can lead to much consternation, and   also a flurry of emotions. Yet at this moment, it goes far beyond that, as its a moment of love. I have a lot of work to do on the faith angle, and in many other aspects of day to day living. Yet I am profoundly thankful, for the love of Jesus, that does exist in my heart, along with the hearts of so many others. In one hour, I feel better, and wish that more people would choose to enter the doors of this church, or any place of worship for that matter. John 3:16 about sums it up. I hope to live a long and productive life, yet its up to a higher power, to decide the day of my going home.Until then, there is much work to be done, and may it be done with love and a desire to improve the lives of my fellow human beings.

Mobility: One Aspect of Angelman Syndrome

The other day I smiled a grin like I had not in a long time. A young man whom I know, that has Angelman Syndrome, walked his first steps. Walking. Steps. Something so many of us take for granted. Yet for this family, who is the very definition of incredible, this was a feat that can only be described as impressive at a scale, that it is impossible to grasp with mere words. All of the love, dedication, of this family, along with help from teachers, therapists, and friends made this moment possible. It is with my sincerest of prayers, that he continues to walk, and put that one foot in front of another for a long time.

I actually enjoy seeing videos of people with Angelman Syndrome(angels) walking. It brings joys, despite the tears that have been in abundance, the past few years. In a couple of weeks, it will be the third anniversary of my boy Tommy's passing from cardiac arrest, of an Angelman related seizure. Just like other days, our family will be at his gravestone. I often look at his younger brother, even though he can be troublesome, and just grin thinking about how much he looks like Tommy. This is especially true when he's sleeping, as the expression is like looking, at our little boy who we miss every single day.

The past month has allowed me to do a lot of thinking. I now realize something, that I did not notice previously, even though I had two knee surgeries prior to the one I had on October 1st. Perhaps I was too young then to realize how important mobility is, or after having an angel in my house who did walk a bit, or having watched so many videos of angels walking, it is imperative to find the cure for this condition. Not only for seizures or speech, but for the opportunity to move at a much better pace. My leg is getting better, and I am now able to walk short distances, of which I am thankful for. If it heals well enough, I shall run again, and at the very least, I will be able to hike and bike without too many difficulties.

Yet for conditions such as Angelman Syndrome, walking is a major challenge. While angels, just like other children, have a variety of different abilities mobility is a major issue. Some never walk, although most do to some extent. I hope and pray that a cure, or therapeutic measures can be implemented, that will allow angels to walk with more ease. They enjoy life to the fullest even without being able to walk, or to "go the distance," but it would be so wonderful to see these children able to walk long distances and without that trademark gait. Its not their fault, as they are born that way, yet it would be an eye opening experience for them, their parents, siblings, and friends who have become family.

We must continue to push for a cure. The Angelman Syndrome Foundation is the largest non-government funded group, that is working for a AS cure. I am also impressed with the work that the Foundation for Angelman Syndrome Therapeutics is doing. Its good to have a couple of "bullets in the barrel," and its with these groups, along with parents, other foundations and government funded institutions like the NIH, that a chance at better walking and a cure are going to happen. We must support them, and as people across the globe, continue to help each other along the way. One angel walking is like 1,000 children doing the same, and every kid counts.

Proof of a Dog's Love of a Special Boy

I often joke about our "worthless mutt" Piggy, but in reality, our dog is very much a member of the family. When we bought her as a puppy in early 2003, my future wife and I were living together in a cockroach and rat infested condo in Arlington, Virginia. We didn't have a lot of money back then, but we were impressed how this puppy, just seemed to say "take me home." I laughed as she dominated other puppies in her pen, and she warmed right up to us. After deliberating at a nearby Taco Bell, and I'll admit it I cried thinking about  leaving the dog I totally fell in love with, my wife rode with Piggy all the way home on the front seat. She chose us, no doubt about it, and I never thought that a pooch could change our lives in so many ways.

Happy Birthday to our four legged family member, who has experienced joy and pain, along with who has provided much entertainment and also is responsible for destroying all of the blinds in our house. Piggy is a shar pei and perhaps terrier mix, and she's not going to win any beauty awards or personality contests. She tried to attack full sized Rottweilers from when she was a puppy, does not back down from any dog, and has a observe people first approach, before becoming their best friend for life. No joke, she remembers people that she has not seen for years. She has stupidly chased a horse, before turning away at just the right moment, and also fell into the Occoquan River on a boat trip. This dog has forced us to switch from a mail slot on our front door, to putting a mailbox out front, because she simply attacks the mail. Our mail man is deathly afraid of her, and was shocked when he learned she wasn't one hundred fifty pounds. She has a deep bark, and one night, I received six stitches from startling her while she was sleeping. I am still waiting for my $50 co pay to the ER, and the $15 for the antibiotics. 

So its a dog? Yes, she is that. Yet looking at her in the doggie bed she resides in, I think about how she outlived our son Tommy, who passed away at age five in 2009. It doesn't seem fair, and while I don't hold it against Piggy, it does bother me. Yet at the same time, I am immensely thankful to Piggy. Not once, never, did she ever show any aggression, not even a growl or complaint to Tommy, who pounded her head with his fists, and his jerky leg movements caught her in the face so many times. All she would do, is turn and run the other way. If other children even approach her, she growls and puts on quite the show. With our other boy, she growls at him all of the time, and he has to be supervised around her. I know this might sound crazy, but she knew that Tommy with his Angelman Syndrome condition, simply couldn't help it. She often sat next to him, even as she got "rocked" quite a few times from his rather strong kicks.

There is a special bond between children, especially those with profound medical needs, and even dogs that have failed the most basic of temperament tests "get it." Thank you Piggy, for putting up with all of the abuse from Tommy that he did not mean, along with providing comfort to all of us at our time of greatest shock and sadness. Many a night, I would just sit alone on the couch, and pet her. She would look up with the saddest of eyes, and I am convinced that she understood. Even the night the paramedics responded on that dreadful night, she did not growl, when she would growl at anyone from calling her name or putting her int another room. Piggy is an old dame now, and doesn't romp in the forest like she used to, chasing deer or horses for that matter. Yet, she has been a loyal friend to our family, and I am thankful that she was so good to Tommy. Happy Birthday Piggy, and you shall get a lot of love and attention, even as each day is a challenge. You make life a lot more interesting, and we are thankful for your understanding, of a boy better than all of us combined.

Everybody Hurts......Sometimes

R.E.M. in its heyday, was one of the most popular bands around. True, they started out as a "college band" down in Georgia, but their impact has been felt on an international scale. A lot of their earlier songs were to my liking, but a lot of their later ones, just either left me bored or were not "my particular cup of tea." This I say as a man who loves all genres of music. Yet their song "Everybody Hurts" is a powerful one. It is so, because it speaks of simple truths, and the human experience that all of us go through. We all think we know someone "who's got it made," but underneath the curtain, do not be surprised when you find shattering pains that would bedevil anyone. Most people hold these in, some share them, its whatever is best for them that matters. As long as a person expresses their pain, that does not harm themselves or another, that is an alright way to resolve heartbreak.

"Everybody cries and everybody hurts sometimes." "Find Comfort in your Friends."  Those lyrics aptly describe what all of us go through. As the father of a child who died, that is my great sadness, and there are plenty of others out there who've been down the same road. There are parents right now, who are watching their children have thousands of seizures a day, holding their daughters hand who is facing life threatening Cancer, or seeing their girl not able to express the pain that they are contending with. Its heartbreaking, there are no other words for it. Tears of a river magnitude are going to occur, and that is alright, because as they hit the ground, I am convinced deep in my heart, that our loving father in the sky feels this. As do our family members, who may have different last names, but are more than just friends, but rather angels among us.

There is a lot of pain in the world today. In every country, on every continent, people are suffering. Our fellow human beings. We must pray for them, and in the cases that we can extend a hand, it is our moral obligation to do just that. Often I find solace in the woods, or as I walk by the grave stones of military members and their families interred at Arlington's National Cemetery. The cadence of the men and women, who are in the Army Division at the Tomb of the Unknowns, brings a level of peace that cannot be described. There are tears yes. Yet there's also hope. These men and women walk twenty four hours a day. We must do what they do, and walk in their shoes together, in unison with one and another, to be good neighbors for our friends in grief and in joy. Embrace life as much as possible, because each and every day is a blessing, that we must be grateful for. Even the bad ones, can be learning experiences, that bear much fruit.

Your Telephone and the Lunar Landings: One Bold Step for Mankind

Look down at the phone in your hands. Its probably a "smart phone," and the name is appropriate. You can do everything from making a call, to finding directions with its GPS, or using Skype to talk to someone overseas with it via video. Back in the day, I'll never forget how people marveled over those large cell phones, that often needed a bag with an antenna attached to them. Yes, I'm getting old, and that's alright, but the wonders of technology never stop becoming amazing. Its almost like going back to your childhood in some regards, as the space shuttle program used to have me marvel with wonder. Often this led to distractions in school, or even sadness, the day that the Challenger met disaster in Florida. Her seven brave souls were lost forever, but etched in our hearts and nations consciousness.

Often I ask people who were around for it, what it was like to witness the moon landing. Yes, I've read books upon the subject, or watched youtube videos, but there's nothing like hearing it from the real source. It is amazing, to hear folks talk about what it was like, the anticipation of the Eagle touching down on the lunar surface. The odds of the astronauts, although not public knowledge at the time, was around a 50/50 proposition. They had some parameters to work with, but in many ways, they were like a naval aviator in war flying onto a dark aircraft carrier. A young man with Angelman Syndrome has walked today. Its such a joy, in many respects its just like those first bold steps of Neil Armstrong, to hear of this major accomplishment. Against all odds, yet with faith and a loving family, this champion showed exactly how its done. He took that "bold step," and may he take many, many more.

Right now Dr. Weeber at the University of Tampa, and Dr. Philpot of the University of North Carolina are working for a cure, with regards to Angelman Syndrome. It is the hope and prayer of so many parents, along with the hard work that FAST and the ASF are accomplishing, that leads us to a better chance than ever for that goal. The smart phone in your hand, has more power technologically, than any of the lunar landing craft had on the Moon. Heck, perhaps your toaster oven in the kitchen does. Look down at the phone, up at the skies with thanks to Divine Providence, and realize, how far we have come. In honor of this young man, may there be bold steps towards a cure, and children with Angelman Syndrome having much better footing. Walking forward, small steps there have been, and now the possibilities for bigger ones are taking place. With much love to all families across the globe contending with AS, the time is now. To the young man who took these steps, I hope to get the honor of seeing you do this, because it is not 1969. Its 2012, and on to a cure.

Dreams are Powerful Reminders of Loss

I cannot honestly say if I've had dreams about my son Tommy's passing prior to the other day. Often I do dream, but have a hard time remembering anything about them, with the exception of the ones that don't make any sense at all. Yet, the other day, I had one so powerful and so painful, that I hope that it does not happen ever again. Its not up to me of course, as the mind asleep, can remind you of events in life, or of things that are out of a Dr. Seuss novel. I do not want your sorrow, but am wondering if other parents have had this experience. It has been almost three years since our boy passed away, from that seizure that took his life. He is still very much in our hearts, and always will be. His younger brother knows all about him, and as the years continue on in the road of twists and turns unexpected, we shall tell him more about Tommy and all that he stood for.

Tears fell down my eyes. I wanted to wake up desperately, as I could not seem to make myself do that. As I had my head on the pillow in the morning, I could hear that my wife was taking a shower. I was trembling, crying, as I had just been given the news that my little boy had died in a car accident. Tommy was gone. I knew this already, but this was a totally new angle, as that's not how he left us. It was such a strange setting, the strip mall down the street from us, and I do not know if this is related to talking to a man years ago who lost his son who was racing the car aggressively, or just by sheer random chance. I have never had a dream, where I was crying in my sleep, and even so when finally awake. That's when I was able to stop for the most part, but the dream woke me up early, and I wonder how I am going to handle Tommy's third anniversary of leaving us on 11/04.

Life is so mysterious. The human mind certainly can play tricks upon us, and although the science behind dreams is not very well established, I do wonder what this one means other than living through the pain of losing a child. Do other parents who've been through this, have this same experience? I was shocked by the powerful emotion from this dream. To wake up crying is not expected, and while there have been tears and will be, that is an odd time for this to occur. I chalk it up as another one of life's lessons, and have not been permanently harmed by it. In many ways, I think of it as a reminder of what was, and what is. Tommy is very much missed, and I often smile and cry, when I look at his brother, or pictures of him. He'd be eight years old now. It is my sincerest of hopes, that seizures will be cured, and no other families will have to go through this. Yet until that day, sadly that is going to be the case. I hope to have a a dream, that becomes a reality, and that is the cure is discovered, and people across the globe can celebrate the day that SUDEP is no longer a dreaded acronym of so much heartbreak.