Interested in a cure for seizures? Here's where you can immediately help.

Feel free to share any of these posts. There are no copyrights on any of them, they are for anyone, anyplace, anytime for whatever reason. All of my love, from a man who just simply misses his son, and believes in the decency of people around the world,

**To reach the author of this blog Mike, the best email account is a silly one, but goes right to my phone. Technology is so cool. Its Thank you for reading this blog, and its been such a good project, in that it has helped others and me as well. May you all live life to the fullest, we have no idea when it shall be our last "dance."

With much love, I am proud of the Angelman Syndrome Foundation. If you can help them, and families with this condition, please consider donating to them at They are on Charity Navigator, and have done a phenomenal job over the years, on the awareness and research side.

Sunday, August 26, 2012

Neil Armstrong: Man on the Moon and Humility

Like a lot of folks across the world, I was saddened by the passing of Neil Armstrong yesterday. As a self-confessed space geek, I often look up at the Moon, and think "Wow, to think that people have been there." Neil Armstrong's life is something out of central casting, as he was an accomplished pilot at a young age, and had what Thomas Wolfe aptly described in "The Right Stuff." He served valliantly in the Navy during the Korean conflict, went back to school at Purdue University, and was a part of the Gemini 8 and of course beyond famous Apollo 11 landing on the Moon. "The Eagle has landed, and that's one step for a man, one giant leap for mankind." He received multiple awards and accolades, including the Presidential Medal of Freedom and Congressional Medal of Gold.

Yet for all of his accomplishments, Neil Armstrong was a humble man. He did not seek the limelight, and while a lot of that could be attributed to his desire for privacy that he brought up in his autobiography, he could have had whatever he wanted. Instead, he took part in helping other astronauts, whether through training, or as part of investigations in the Challenger disaster. Sitting on my couch here in 2012, is a android phone, that has more technological capability than Apollo 11 did. Its not going to the Moon. At least I hope its not, because I cannot get there, and do not want to spend $200 to replace it. Neil Armstrong's family released a statement yesterday, that sounded just like something he'd say, during his very few public appearances. That was "Everytime you look at the Moon, there's Neil winking."

So we've landed on the moon with Armstrong, and eleven other men. There were I believe six missions on the Lunar Surface, so why haven't seizures been cured? Why are children and adults, having from one to thousands of seizures a day, and some of them dying from this condition? I do not know the answer, because as a simple man, there are no easy answers. Yet I firmly believe that Steve Jobs, another pioneer was correct, when he said that "biology and technology will come together like never seen before, in the next ten years." His prediction rate was pretty good, and it is with the most sincere of prayers, the most depths of passion, that we must do exactly what Neil Armstrong did. Work together. His humility was not only shown after returning from the Moon, but even prior to that. He was a guy who worked with others, to accomplish even the most mundane of tasks.

65 million people across the world have epilepsy. That's right, this condition affects many individuals, and families. The costs to a person contending with this, and their families, if put into an economic formula would be mind boggling. That is why it is each and every one of our moral obligations, to put aside egos when necessary, our pride, and fight with solidarity for more funding and research. Only 1/2 of 1% of U.S. financed medical research goes towards seizures.(3-4% of the American population has this condition) Even though the U.S. and other nations around the world have dealt with financial struggles the past few years, it is a worldwide effort to eradicate seizures. We must constantly chip away, quietly brick by brick in our efforts, but at the same time find the right balance to have our voices heard. The White House must be turned purple for a day, as a reminder, that we must cure seizures, because John F. Kennedy was right when he said "Not because it is easy, but because it is hard."

Neil Armstrong, Buzz Aldrin, and Michael Collins were on Apollo 11's mission. I have a coin from the Marshall Islands commemorating this historical event. A few months ago, I touched the lunar rocks at the Smithsonian Air and Space Museum in Washington D.C. It was a surreal experience. I will not launch into space, nor get to fly in the Orion/Constellation Next Generation space craft. That is okay, but what is not, is that right now so many are having seizures as this is being typed. In honor of Neil Armstrong, and all pioneers who have done something amazing, let's all find ways to keep up the pressure on legislators, and foundations, that can push for seizure research. It does not matter what condition causes the seizures, but what does is the results. This is our generations challenge, and may we answer this call, united and ready to keep doing our work with rolled up sleeves and sheer determination.

Saturday, August 25, 2012

The Angel Quilt Project: Love in the Midst of Pain

Finding your child unresponsive, or having your child have a health ailment that causes death, is a painful ordeal that I would not wish upon anyone. That is because I know firsthand what it entails, and in addition to the shock of going through the initial pain, there's so much more to follow. With that being put down here, life does go on. Parents, grandparents, siblings, and friends will experience a plethora of emotions. It is such a crushing blow. I still cry thinking of seeing Tommy in his casket. Yes he looked so at peace, but a five year old child like that. My boy. Our family's "laugh and smile machine." Gone. That casket closing. Putting dirt upon our own flesh and blood, who is a child.

There are all kinds of cliches that can be used. Yet there's no need. The death of a child is so awful. Families go through this never get over it. It does not mean that they won't be happy again, but they will not be the same. Angelman Syndrome is something that folks across the world are affected by. It is caused by a partial deletion of chromosome 15, but what it takes away, actually makes for a better human being than can be imagined. Each angel that I have met is a fighter, with a level of resolve seen no where else, and most importantly love. When you get a hug from an angel, there are no words to describe it. Whether you believe in God or not, there is something about it, that is spiritual in these hugs, and this display of love that all of us could learn from.

The Angel Quilt Project, created by Susan Salisbury Winfrey and staffed with volunteers, is an effort people from every background can be involved with. She wrote about how heartbroken she was, to learn of other angels departing this earth, leaving families who's lives are turned upside down by the loss of their little girl or boy. With her pain, she decided to do something admirable, and that is to provide comfort to these families. She is an angel mom herself, and other parents who have an "angel", have stepped up by producing beautiful quilts to these families. Blanket them with love. The Angel Quilt Project is that, because when Tommy died, I felt like the loneliest human being on the earth. I thought "no one is going through this." Yet there are, whether it be those whom have children with Angelman Syndrome, or any other medical diagnosis or none whatsoever.

Right now angel families are missing laughter and smiles in their house. They are missing the child who can light up a room, just with their mere presence. By all means, if you can, just $10 will provide a picture of an Angelman child to be placed upon a quilt, that will have lots of "angels" on it. That's less than a loaf of bread, milk, and eggs when put in your grocery basket. It provides sustenance, true nourishment to a bereaved mom, dad, siblings, grandparents, and family members going through such pain. Each quilt created by this fine endeavor, goes to a grieving family, and is a tangible example of "You are not alone." It helps with the grieving process to know that, fellow parents with an angel have gone down this highway. Also, it is reassuring to know that people care, at your time of greatest anguish.!/pages/The-Angel-Quilt-Project/267961783227848. This is the link to the Angel Quilt Project. It has already helped fight seizures, often the case of an angel getting their wings too early, but even more important, families from around the world have a beautiful quilt, with their angel missed in the middle, surrounded by other children whom have Angelman Syndrome. People with golden hearts, are quilting away to make other families, know that they are loved through this effort. All that is needed is your help. Please do what we used to call in the Boy Scouts, a "good turn." This is more than that, but a $10 donation will pay for a square on a quilt, with a smiling, comforting picture of an angel to a bereaved parent. Love is the answer, and while all of us in the worst club imaginable hurt, many of us are inspired by this effort. It is more proof of our interconnectedness, and to a family at their darkest of hours, it offers a beacon of light where no other one is available.

Tuesday, August 21, 2012

Petula Dvorak of the Washington Post: Let's Find that Cure For Angelman Syndrome

It was an honor and privilege, for our family to meet with Petula Dvorak of the Washington Post newspaper. She is a woman of fine character, who writes from the heart, and we all greatly appreciate not only her kindness, but also her willingness to go the extra mile with her piece on our boy Tommy today. The past few years have been difficult, as our family misses Tommy so much, and we all so want a cure for angelman syndrome.(Partial deletion of Chromosome 15). There has been anger, depression, denial, bargaining, and acceptance as so eloquently described by Dr. Elizabeth Kubler-Ross.(No relation) These have not been in any particular order, but they have all shown up at various points, as families that have had to go down this road, know that they can also come all at one time or out of the blue.

We still cry over Tommy's passing at age five. Is it unfair? Yes. Sometimes it feels like a knife to the heart, pain upon pain that can leave you questioning everything that you could have ever imagined and then some. Yet, I know Tommy is most certainly in Heaven, dancing with the angels, and that alone provides some comfort. We will never get over his passing. Not until our own deaths, and while we hope to all live long, productive lives, we do not take any day for granted anymore. Each day is a blessing, and even in the midst of this challenge, we have learned a lot about life, death, each other, and what we value.

Our family is thankful for "angels" like Mrs. Dvorak, and our family members who come from different countries, and might have different names. Yet they are family indeed, and we wish all nothing but love, and will always be there for anyone in need. We obviously are not perfect, and I am grateful to everyone. The list is long, but it includes people from all walks of life, whether it be the Angelman Syndrome Foundation and FAST, two groups that are working for a cure, and Vanderbilt University Kennedy Center that is working on seizure angles. The NIH and other institutions are in our prayers, as are all people with Angelman Syndrome, their parents and families, and anyone who's been given a challenge that seems insurmountable, and yet through faith and the strength of the human spirit that all of us have, carry on and move mountains seen and not so visible to the naked eye.

As posted, there is no getting over the loss of a child, only "through." Its by no means an easy process, but millions of people across the globe, through periods of history and right now, are going through this. Our hearts are heavy for them, as its a long road, a journey that a gentleman named Darren in New Zealand who had his beautiful Elijah go to Heaven as well, so aptly describes it as. Its 2012 and we are closing in on the third anniversary of Tommy's departure on Earth, and these dates bring back a flood gate of emotions. Yet we are proud of our boy, as he defied so many odds, and walked unassisted strongly that last week, with a determination that none of us will probably ever have. His golden heart, all of his teachers and so many people were on Team Tommy, we are forever grateful.

Petula's piece has brought additional healing, and we are very appreciative. There have been tears today, and that's more than okay. Yet there have also been smiles, and if one family is touched, or at least finds some comfort, then by God's grace, we are even more thankful that someone says "I am in pain, yet if this is what I have to face, then I am going to get through this and emerge with a new view on life." Life is such a valuable thing, and each day must be appreciated, and it is a learning experience. Tommy has his wings. He will always be a part of our family, as will so many people from around the world, who have also touched our hearts, and reminded us of the value of one step at a time.Love one another.

Sunday, August 19, 2012

The Coach Tony Dungy You Might Not Have Known About

Tony Dungy is a man, whom I hope to meet. I just want to shake his hand, and say thank you to him, for being who he is. Most of us when we think of him, see him prowling the sidelines in a Tampa Bay Bucaneers or Indianapolis Colts hat as the Coach, where he did win a Super Bowl a few years back. Coaching in the NFL is one of the world's most stressful positions, and one that will ultimately leave all of them sleep deprived. Here you are with 50+ men, who are making boatloads of money, various ego's, ownership managers with high expectations, and thousands of rabid fans who want nothing but a win. The skill set at the NFL level is unreal. I've had the honor of running with a former NFL player twice my size in weight, and he dusted me like yesterday's breakfast. The press chases you constantly, and as most who watch football know, coaches are more expendable than the players on a team. Its where "the buck stops here."

Often I think of Tony Dungy, because he is a man, who's not only a Hall of Fame coach, but so much more than that. As most know, he retired, and now runs a foundation for father's to become more involved in their children's lives, along with multiple charitable endeavors. He is a TV analyst for NBC sports, and also sponsors mentor programs. His legacy in the NFL is still very much continuing, as his "coaching tree" has blossomed, and he has written several books. Even if you are not a fan of the gridiron, I highly recommend any one of them that he has penned. They are truly beautiful, inspiring, and I love his quote of "Your life is of value, if you have helped another person out." A committed Christian, he upholds those values, and this quote is his way of saying what Jesus said of "Love one another."

Sadly, Tony Dungy's son committed suicide. He openly discusses this, and the pain that it has brought to his entire family. This honesty is so greatly appreciated, because he not only helped me during my darkest of days after Tommy's passing, but I just have a feeling that he's meant so much to other Dad's and Mom's, Grandparents, Uncles, brothers, and sisters, who've been in a similar predicament. A trial and tribulation it is, that no one should have to go through, yet Tony Dungy has been frank by talking about how "he's still grieving." I understand that loud and clear, as I shall always grieve until my last moment on this planet, and like him am saddened, but at the same time must carry on. Also, I believe he is right, about being honest about your pain, and dealing with it so it doesn't become who you are, but rather a part of you that causes you to help others.

Today we went to Tommy's grave, and it as always, was a painful experience. Yet it must be done. His younger brother knows that is where he is, and while he is still too young to understand some aspects of Tommy's life and passing, he is going to know the whole truth, and nothing but that. Each person in this situation has to decide, what is best for their family, if faced with this type of event. Yet I believe firmly in my heart, that Coach Dungy's decision is the right road to take. It is important for parents and other family members, to share with siblings and others, what a child that is no longer with them meant, and still does each and every day. Tommy is still very much a part of our family, and will always be, even though he is in Heaven, and beyond the grasp of the hugs we want to give him so much. Yet one day we know that we shall see him again, although it is a long road, and all of us feel as if we've lived a million lifetimes. However, we are thankful Coach. You've made a difference to us, and you are certainly valuable to our family.

A Health Scare Provides a Wake Up Call to What Matters

The past month I have been very frustrated. It has not been the most difficult of times, but it has led to consternation, tears, anger, and an outpouring of emotions that have been all over the place. Nothing will ever cause more pain then the passing of my son Tommy, and it is because of this sadness, that I now have my eyes open more. Whether it be to the needs of others, or taking time off to reflect, each and every one of us has issues. That's because we are human, we are all sinners, and imperfect in every regard. I am thankful to unexpected angels who have guided me this past month, along with the kind tutelage of Bethlehem Lutheran Church. I am grateful to my family, friends, and so many more that have helped me to keep the faith, and realize the lessons that have just been endured, and I do hope for answers.

As a high school student, I ran sub five minute miles. I loved getting out on a track or for a long distance run, and just straight up, being part of a team and also knocking the socks off of fellow runners. It wasn't with animosity, but rather, just a spirit that wanted to win. I wanted a chance to get a college scholarship also, and had two knee surgeries wipe that out. The first one I came back, and my speeds were slower. The second one prevented me from running period, at least but for short distances. This past year I made a comeback of sorts, and was thrilled that my knees with proper icing and aspirin, allowed me to run up to half marathons. My times for a guy in his mid thirties were pretty good, in fact I'm proud that I was able to run thirteen miles with an average page of 7:15, and even was able to get in a 5:57 mile. I lost close to forty pounds in the process, and am in the best shape of my life.

This was also due to being diagnosed with severe allergies, and getting treatment for it, that allowed for this to happen also. Immune therapy made it possible for my lung capacity to improve at such a rate, that I was barely out of breath after 13 miles. It was thrilling, and I just smiled, while crawling back to my vehicle or the house after completing a run. Yet a month ago, I went into encephalitic shock, and had to be shot up with adrenaline, to allow me to breathe after an allergy shot. I was angry. Furious. I am thankful that the nurse realized my respiratory issues, and immediately got the doctor, and administered this. Yet I have had to make some changes, including giving up that occasional cigar, and even more painful, running. I am now on a regimen of prescription drugs that cause even more fatigue, and I've gone from feeling 26 to 56.

To go from the top of your game, to the bottom, completely sucks. Yet, I have come to the conclusion that even though I will make another comeback to running, it is going to take some time. Its probably going to involve more doctors, more needles, and being the proverbial walking guinea pig. However, what is the most important is being alive. This is a slight burden compared to what so many more people go through, and I'm thankful that I did not leave my wife and other child alone. Life is such a blessing just by itself, and there are other activities. True I'm going for a second opinion, but it is not the doctor's fault that I'm the "lucky 1/2 of 1% that have this reaction," but perhaps its God's way of saying focus on your family. That's what I've been doing. So far there has been no weight gain, which was a concern, and I've spent more time with my silly three year old, who needs a father to provide guidance. I've also been able to see my wife thrive, and we've done some activities that don't have "restrictions" on them. Its been great in that regard, and I hope that once the testing is complete, to be back at 100% sooner rather than later.

Each of us have battles. No matter if its epilepsy or other medical conditions, none of us have bodies built of steel. We are human, and must take care of ourselves, in order to help others. I do not know what the future brings, but I pray that God will provide guidance. Today at church, there were some valuable lessons, about Noah's ark, and riding out the storm. This is a minor one, and there are going to be more in life, as that's what our mission on this planet requires of each and every one of us. We are all capable of amazing things, but what matters the most is to accept what we cannot control, and give everything to what we can. Its easier said than done, but this Sunday and the past few weeks, there has been a lot of reflection. I continue to pray for the health of others, including those affected by seizures, and will continue to push for advocacy and awareness. Yet at the same time, it feels good to have the blinders off, and let the competitive spirit take a break. Its healing, and I have a feeling that this is part of God's plan, and will just learn to live with this experience as another of life's lessons. Life is a blessing, each and everyday.

Wednesday, August 15, 2012

My Heroes: Parents with Children Who Have Special Needs

Life is full of tribulations for everyone. No one "gets an easy ride," even if on the surface it appears to be the case. Yes there are folks who appear to "have it all," with money, a luxury car, perhaps a voice controlled coffee machine that can produce a cup of java from Kenya or Indonesia. Yet the bottom line is, that all of us do suffer. That's just the order of life for whatever reason, and one person's suffering or challenges, are different than others but regardless they shape who we all are. Right now there is a parent with a dying child crying their eyes out, or a young lady who's working at a job, who is struggling to do her best even though last night her daughter had hundreds of seizures. These people are around us everyday, and so often we look at the surface of others, but don't dig enough.

My heroes are children with special needs, but their parents are real champions as well. These children who have so many challenges fight, but their parents are very much involved, in every single aspect. The love and care that they show for their children is a testament to resilience, and the fact that they go to work, and often passionately soldier on in the midst of pure exhaustion, is a sign of dedication of unparalleled levels. Special needs parents are grateful for that strong coffee, and the support that they get from their families and friends. Without these "angels" who step in at times of need, life would not be possible. Yet I've noticed something about parents of children with special needs. They might have been up all night with countless sleep disturbances caused by their kids medical condition, or the fact that they've had to monitor their hundreds of seizures, to decide whether to call 911 or not.

These parents dedication is ten fold on the job. If I had a company, I would hire parents of children with special needs. The reason is simple. They are warriors. They have battle armor built into the very foundation of who they are, after fighting constantly for their children, but yet still have resolve to be the best that they can be. These folks are able to relate to the most difficult of people, because they have been down a road, so many have not. I do not have the business accumen or resources to have a company, but for those who do, you'd be well served to hire these amazing people. Yes, they might have to take an occasional day off, or be called away for their son or daughter being rushed to the ER. Yet, when they are on duty, they are "Go, Go,Go" despite circumstances that could easily thwart those who havent met this challenge on a daily basis.

Their creativity also is something, that can be used for innovations in technology. Ask any special needs parent, about their improvising skills. You will learn what they have been able to do, and while they might not have a medical degree, they are more knowledgeable than a lot of doctors. This is not a slap against those in the medical field, but rather, the reality of what these parents have learned from lots of hands on experience. Are there foundations and charities, that represent families and children with special needs? Absolutely. They are contributing to society in many ways, some of which, with regards to research that have the potential for cures that affect millions of people. Yet they would be nothing, without the blood, sweat, and tears that parents and families across the world give every single day.

To the parents of special needs children, my hats off to you. You know who you are, and you carry yourself with bravery, dignity, and class. So much has been thrown in your direction, yet you refuse to duck, but you stand up tall. Each and everyday you deal with what could be described as insurmountable odds, but still find a way to go in to work, and take care of business. Romans in the Bible describes endurance so eloquently, and Dr. Kubler's "beautiful people are from those who face the toughest of challenges," is so true. I do not know when there will be a cure for so many conditions, such as Angelman Syndrome or Rett Syndrome, or CDKL5 and a host of others that most have never heard of still. That has to change, for sure, as more people need to hear your stories, and realize that behind your eyes there's more to you than they could ever realize. Carry on, and God willing, one day that day shall come.

Tuesday, August 14, 2012

A Day with Tommy:Simple Joys of a Man Who Gets It

I have a bad habit of forgetting people's name. Have you ever just met somebody, had a wonderful conversation with them, and are "uh?" Sometimes names are important, but what really matters is a persons character. Their heart and kindness, and I'll never forget the decent gentleman who helped Tommy out with his AFO's.(Orthopedic devices) Soon I plan on visiting him, and it is going to be painful, since I last saw him about a week prior to Tommy's passing in 2009. Yet I feel compelled to thank him, for two fun visits, that made Tommy laugh and smile like none other. A trip to this gentleman's office, I learned on the first time, is where he went to college, and wanted to help out veterans returning from the Vietnam War. He was able to build prosthetic and other devices, and figured this was one way that he could serve. This he certainly has done for twenty plus years, and you can see the passion in his eyes.

Upon hearing that Tommy needed AFO's to help him walk, was not an easy pill to swallow. Nor was that he was going to need a wheelchair, but this man helped both of us. A trip to his office in Fairfax, VA revealed a small place, almost humble in its decor with small tables, some chairs, and a couple magazines from months past. He came out of his office, greeted Tommy and I, as we walked back to where he made the AFO's. These are done with applying a plaster type of putty, is how I can best describe it, and Tommy just absolutely enjoyed every moment. He laughed and smiled, as his feet were in the water. This kind man gave Tommy so much attention, and treated him with so much dignity. He made sure that Tommy's designs were ready to be built, and also joined in with Tommy having fun.

A week prior to Tommy's departure, I picked him up from school. He walked with me assisted out of those front doors, and was able to get across the entire parking lot. I think it was a good workout for him, but he just kept trudging along. Tommy was a soldier, and kept walking, even though each step was certainly not easy. After buckling him in my car, and playing music for him, I could see him in the rear view mirror bouncing around. We visited the same place, and once again, Tommy and I met this gentleman. Tommy had so much fun, loving the attention provided to him, and having his feet dunked in the water again. It certainly was not an easy task, to have him properly fitted, as Tommy's legs were all over the place. Yet this man's patience, he didn't complain one bit, and was actually able to get Porky to stop moving for a few to guarantee the perfect fit.

Sadly, Tommy never got these AFO's. I had to make the call to cancel them, and it wasn't easy. The staff was understanding, but I feel compelled to thank him. This warm person with a big heart, was doing his job. Yet he went beyond that, by showering Tommy with love, and making sure everything would fit so he would have the best possible opportunity. Those steps are going on in Heaven right now, and I am left with the memories of Tommy, and what these two visits to this office meant. On the surface its not much, but what it is, represents the kindness of a man who dedicated his life to his profession with passion, along with a day of being plastered up and having fun with water. Its these simple joys that provide a smile, and are a reminder of people to be thankful for, during times of infinite sadness. There are tears yes, but there is also a grin. I certainly intend on getting his name, and remembering it too.

Sunday, August 12, 2012

Today I Won't Be at Church

Today I won't be at church. That's okay, as you can worship anywhere on this planet, and one of the most spiritual places is the ocean. While I have to admit I wish there was time, and some pestering medical conditions right now would allow for such a trek, I am ultimately satisfied by going to the Chesapeake Bay. Its really not a consolation prize, but rather going to Sandy Point Park, will be a chance for reflection. I'll be showing my son a salt water environment for the first time. At the same time, it will be a place that I took Tommy, and that he loved very much. Whether he played in the sand, or was in the water, it was always a happy time to go here. I think today bodes well on the "Smile-O-Meter," and there is something so deeply felt by those waves crashing.

Until recently, I had no idea that this State Park, was where on the East Coast, the most shark teeth were found. That's comforting. It is with no trepidation however, because this estuary is a breeding ground for these fascinating creatures, my son's nickname is "Sharky", and the ones here are generally too small to be harmful to human beings. Also, our family follows a common sense rule. Don't swim at night! That's when the vast majority of "shark bites" happen, and its because its their feeding time, and you are in their house. While I don't want to meet any sand sharks or other species that roam this area, I wouldn't mind seeing one of my favorite horseshoe crabs. For whatever reason, I find them to be fascinating, and they are a reminder of how old this planet is. They are true living fossils, as they have not evolved as other creatures have, and seeing them is just a simple pleasure.

The only part I dread about going here, is if Route 50 or the Beltway will be loaded with traffic. Even on Sundays, it can look like a modern day parking lot, that has 55 mph signs on the side of it. There's also a place, where if you aren't expecting it, little airplanes go flying right above your car. The first time this happened I about jumped out of the seat driving, although on later trips I saw the signs that warned of "Airport: Caution-Low Overflying Aircraft". Coffee perhaps? It will be fun to take my boy out on the same shores that Tommy visited, and there might be some tears. That is fine, and its also a reminder of how my father used to carry me, on his shoulders here while he was stung by jellyfish. I'm hoping they are not venturing anywhere in the area today, because they are the ocean's cockroach, or God's joke of an animal. Yet they do serve a purpose, and I'm hoping today will have many lessons.

Saturday, August 11, 2012

Angelman Syndrome, CDKL5, Rett Syndrome: Labels are Great But Solidarity is Imperative

Angelman Syndrome. CDKL5. Rett Syndrome. Fragile X. Autism Spectrum. These are all labels, and while they do serve a purpose, they can also divide communities of loving parents, that want the best for their children. These are exciting times, as technology has now eclipsed previously perceived time frames, to move at an expeditious rate that not even fans of science fiction thought previously possible. With the new approaches of treatment by Dr. Weeber at the University of Tampa, and Dr. Ben Philpot at University of North Carolina for Angelman Syndrome, and work involving mice and other laboratory experiments with these other diagnoses, its only a matter of a time before at the very least therapeutic help will become available. God willing it is sooner, rather than later, as too many children have forever slipped through our grasp.

There are many on line competitions, with companies willing to donate financial resources, to worthwhile charities. A lot of these are on social media sites, such as facebook, and they are a wonderful way of obtaining funds and educating others on various medical conditions. At the same time, parents can connect to describe what their little boy or girl is going through, and just like years ago "compare notes." The Internet is fantastic, as it has made our world smaller, and whether its a blog like this or another launching platform such as Twitter or Peep, use those hash tags with care. Skype has been a tremendous tool for parents, and even medical staff's across the world, as visual images can often show, what audible sounds and words cannot describe. I am certain that it has saved lives, and it has also helped parents, bond across the ponds of water that separate our continents.

My only concern, and other parents in the special needs community have brought this up, is that our children's diagnoses can divide. There have been hot competitions for hard to procure funding, and its left people hurt, driving a wedge between people who really need to stick together. The number of parents and children with special needs across the world do number in the millions, but its a drop in the bucket compared to the rest of the population. Even if you take epilepsy, which affects about four million Americans, and 3% of the world, its nothing when compared to major players that are well entrenched fighting ailments such as Cancer and Heart Disease. I'm not saying this is bad, but they are rounding third base in this regard, while the special needs community is a few strides away from first base.

If only there was a way, that all of these groups, whether it be the Angelman Syndrome Foundation, FAST, the International Rett Syndrome Foundation, the CDKL5 project, and others could combine their resources to some degree, it would be phenomenal. Having a list of parents with specialties in other fields, and languages would greatly enhance opportunities, and a mutual aid system of folks spread across the globe would mean so much to parents in need of frequent hospitalizations or advice. We do not know how long we are going to live, but it is imperative for us, to band together for children and people across the world. Most organizations in the special needs fields, are and its not slap against them, limited in their resources, and have decided cure, cure, cure. That makes sense, although it would behoove them, to in this era of computer technology to have a list of resources available at times of inevitable crises that are going to occur. When not if.

I sit back as a simple man, astounded by what I see going on with medical technology. Yet even more impressive, is the love of so many parents around the world, and their willingness to help one another. It doesn't matter what condition, but rather there's a prevailing attitude of unity. Even arguments are settled with an understanding, that we are a family that needs to seize the day "carpe diem" style. The diagnosis is important, but what is even more, is parents of these different conditions on the genetic tree, comparing notes and standing together. There should be no "Your child has this condition, while mine has this." Rather, there should be an understanding based upon compassion, a willingness to learn more, and ultimately a drive to help each other succeed in finding ways to get the scientists and researchers the funding that they truly need.

Saturday, August 4, 2012

Spiritual Interlude: Quiet in the Woods

The past few weeks have not been easy, as they would have been Tommy's eighth birthday. I spent time crying watching his pictures go by, from his Memorial Service, and the one that broke my heart the most was my presenting him with his fifth birthday cake. It was ultimately his last, and I went through a slew of emotions, from anger to mostly being completely depressed. It has not been good times per se, and anniversary dates for other parents of children who have gone to God far too early, understand exactly what I write. These days, particularly birthdays and the date of departure, are especially cruel because they are a reminder of what was. They are also a reminder of what isn't.

I took a couple of days to go camping. As usual I forgot a item, per tradition it seems. This time it was the dish soap, which had to be substituted with the bathroom liquid soap at Burke Lake. They may have raised their rates, but I am glad that the Fairfax County Park Authority, helped make Campbell's Soup on the stove a possibility, along with coffee. It was just the dog and I as usual, and of course also per tradition, I found a way to rip my tent. Setting up was not exactly as planned, but I actually laughed for once, and even did so when I had to again "improvise" by using the electric power at the bath house for the inflatable mattress, due to the batteries failing on the unit I brought.

This is a yearly pilgrimage, and its where I spend time alone just reflecting. There was some pain, as I lit up the campfire, and looked into the woods. I prayed for answers, and while I received none that I am aware of, I do feel more at peace after those couple of days. The quiet ripple of the waves, and that campfire made it a reprieve from the hectic nature of life in the city, and allowed me to just tune out the distractions, that really are nothing but background noise. 2012 has been a quiet year, as I have not been as engaged on the seizure front, but I did realize that it was beneficial to "take a step back." This way when the time is right, I shall be ready to march again, and with more purpose.

I cannot say if this campout was a success or not. At the very least, it helped calm the tears and anguish of the week preceeding it. There was some simple appreciation for being alive, for being able to share Tommy's story with people, and to try to find new ways to connect with others on this path of life. There haven't been any radio or publications this year, but I realized that does not matter, as my primary objective is to do what its always been, just to get through, not over Tommy's passing. I am a lucky man to wake up every single day, and while I do hope to live until 100, I am not afraid of being a part of the Lord's plans, as simple as they may be. Everyone should spend time in the woods. True, it might be as exciting as a trip to Disney World, but it provides guidance to what we should be doing in this life.