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,

Mike
**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 toiletoctopus@gmail.com. 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 www.angelman.org. They are on Charity Navigator, and have done a phenomenal job over the years, on the awareness and research side.

Saturday, December 29, 2012

The Epilepsy Foundation's Walk 4/20/2013



Do you want to be a part of something special, and meet family that you never knew you had? I strongly recommend going to the Epilepsy Foundation's walk in D.C. Last year I met lovely folks, and as over two million Americans and sixty five million folks worldwide contend with epilepsy, this is a cause that you do not want to miss out on. I had to chuckle, when I heard the date was being held on 4/20. Puff, Puff, Pass. Yet in all seriousness, this is a fun, family friendly event, where you walk around the sights of Washington. There are teams, and I would like to say a special thanks to Jaime, Sara, John, along with Rob, Lisa, and Evan. You know who you are, and you inspire me by your courage everyday. May this year we walk again, and I have learned so much from you.

The weather was fairly cooperative last year, and I hope it will be the same, because thousands of people show up. You will see more purple here, than anywhere this side of Barney the Dinosaur, and it truly is a sight to behold. Every event held by the Epilepsy Foundation, I have learned something new. For instance, last year it was the effects of sports injuries, along with what's going on with our heroes, who are returning home from battlefields with seizures. It was such a joy, to walk with people who are contending with epilepsy, or love someone with it, and don't believe in giving into "the E," but rather believe in stepping up to it. True champions the walkers are, and people from all across the US show up here.

If you want to attend, let a bald man know. I live just outside of DC, right next to the metro. We'll put you up, and "leave the light on for you," just like those Red Roof commercials. This is a great way of showing your support, along with raising funds for epilepsy awareness and research. Professionals from the field are in attendance, as are representatives from the National Epilepsy Foundation, which is located in nearby Landover, Maryland. If you are interested, here's the link, and by all means come on down to D.C. and rock the purple.

http://giving.epilepsyfoundation.org/site/PageServer?pagename=2012_Walk_Homepage

Angelman Syndrome: In the Coming Years



I don't know if there is ever going to be, a cure for Angelman Syndrome. It is my sincerest of hopes that a breakthrough occurs, and if not a cure, at the very least for medicines and treatments that can help those with this condition. Dr Harry Angelman is not alive anymore, but his legacy from his discovery and further works live on, as does the science being done at laboratories, universities, and hospitals across the world. Yes it is too late for my son, but I will be shedding tears of joy, if a cure can be found. I will also respect the decision of each family, to go through with a cure, or keep their angel just they way they are. Research is promising, and with regards to treatments via mice and with other technologies, along with cancer fighting drugs, there is hope. Yet it is with all of my heart, that parents of those with Angelman Syndrome, don't lose focus on the current battle.

That is awareness. Right now a parent is just finding out there child, has this condition, which is caused by a partial deletion of chromosome 15. As a society, we must be there for all families learning this diagnosis, which is devastating on many levels. You realize that your kid in most probability, unless something dramatic happens in the research field overnight which is rarely the case, will be severely cognitively impaired. Yet that's not a reason to give up, as a child with Angelman Syndrome, has more love in their hearts than all of us combined. There are still doctors who have not heard of it, but that has changed over the years, and advances through social media and other parameters have changed the equation. May this continue, and along with helping families who have an angel, let's pray that the research bears fruit.

In my close to forty years on this earth, I have seen amazing leaps in technology and medicine. The other day I was on the net, looking at 80's computers, and we've come a long way. To think that our first phone looked like a suitcase, and the current smart phone I have, has more computing power than any of the Apollo Missions is fascinating. You don't need a super computer like a Cray, to figure out mathematical equations, or crunch scientific data anymore. The DNA sequence discoveries, along with emerging technologies and tests, shows that the potential for cures for a myriad of conditions is indeed possible. I hope that is the case with Angelman Syndrome, and the day that occurs, I hope to be here and crack open a bottle of champagne.

What I like the most about a lot of the new treatments, is that they are not controversial. There are no embryonic stem cells being used, and a lot of the drugs employed are already FDA approved. Just like other medications, the cancer fighting pharmaceuticals show a lot of promise, in that they have other intended uses. The UE83A Gene is fascinating, in that it could be a definitive marker for autism, along with being related to the seizures that not only "angels" experience, but hold relevance for the entire epilepsy community. 2013 is going to be an exciting year, I have no doubt about that, and like others I am praying that there is an "aha moment," where the breath taking discovery will be made. Its up to all of us, to continue to march forward on that path, while supporting one another to that very destination.

Thursday, December 27, 2012

Anti-Depressants and Grief: Today's Washington Post



The Washington Post today had an interesting article, with regards to anti-depressants and grief.(http://www.washingtonpost.com/business/economy/antidepressants-to-treat-grief-psychiatry-panelists-with-ties-to-drug-industry-say-yes/2012/12/26/ca09cde6-3d60-11e2-ae43-cf491b837f7b_story.html) While the gist of it was about certain ties, between pharmaceutical companies, paid advisers, doctors, etc, it brings about a compelling question. That is of course the anti-depressants for dealing with the death of a loved one. While the study focused on spouses, many of us not only in the US, but around the world have buried our children. It is a parents worst nightmare, and said to be the most harsh punishment to the soul, that anyone can go through. I don't know who wrote that, so no plagiarism is intended, and if I can find that source I will be more than happy to credit them for it.

Psychiatry is a medical field that has a mixed record. To be upfront, do I believe a lot of the disorders listed in the Diagnostic and Statistical Manual of Mental Disorders are real? You bet. The DSM is a source for all doctors, not just psychiatrists. It has relevant information for the lay person as well, and can be found at libraries, police stations, and fire houses. As for psychiatrists, I often make fun of Dr. Leo Marvin from "What About Bob," but there are some that are truly compassionate. It is a shame that there is a stigma about mental health and medications, and that is troubling. Anti-depressants have a variety of uses, and can even be used as seizure medicines. Yes there are side effects, but of course, the same could be said with any prescription drug.

This article went into grief a bit, and termed a loss of a spouse as "distress" rather than depression. Both stink, so for getting into semantics, there's really no point. My wife and I could have used anti-depressants after our son's death, but for us, we wanted to feel the pain. Sound nuts? Perhaps it is, but we felt that we had to have the compounding pain, to help us get through not over our loss. To each their own, and I know of others who have had great success with anti-depressants after such a trauma. No matter what road you pick, its what is best for you and your family. Looking back, perhaps they could have helped us, or at least lessened some of the raw emotions felt to go through the grieving process. Yet as we never wished physical harm to ourselves or others, which I consider the threshold to go the medicine/psychiatrist route and then some, I don't think they would have made much of a difference.

I am concerned about the link between paid advisers, and now anti-depressants being recommended more for those grieving. While I'm not an expert on medicine, the fact that there does seem to be a conflict of interest, is one that is a concern. The first priority should be, what is right for those in grief? Especially with regards to a tragic loss of a child, or an unexpected loss of a spouse. I just don't know the answer, but I do think more needs to be researched, in lieu of this article's findings. It might just be scratching the surface, because not only does this affect people who are depressed/grieving, there are a host of other conditions these particular medicines treat. Safety is paramount, as are ethics, and if they are breached that brings in a plethora of concerns to the table.

Wednesday, December 26, 2012

Its Always Someone Else



You see a tragic event on the news, and feel sorry for the victims. Whether its a car bombing, bus accident, or in this past month the savage, evil attack on small children and their teachers, we seem to have short memories. Yes we anguish for these little angels at Sandy Hook, and while there's always political repercussions after such events, we always think, "Its always someone else." That's not callous or to say that a person does not care, but it is probably a survival mechanism, ingrained into us as a means of contending with this harsh world we live in. All of us cried tears for those children at Sandy Hook, and so many other times when evil has walked into a place of innocence. May our prayers, and our hearts be with those children who saw in their last moments something beyond comprehension. Those parents are suffering from an unimaginable grief, because while many of us have lost children to natural causes, they kissed their son or daughter that day never to see them again. To the first responders and the brave Principal and staff, their families are also waking up to a new reality, one that they could have never imagined.

Each day we get out of our beds, there is a chance, that it could be our last day on Earth. There are so many mysteries of life, such as why so many good people die young, and that song from Billy Joel is a reminder of our mortality. Its up to each and everyone of us, how we want to carry our lives. Either we can live in fear, by pulling the covers over our eyes, or embracing life to the fullest, each and everyday. You just never know when it will be your last, and while we all have regrets, may they be minimized by living each day with purpose. This does not require anything special, as the only obligation is to savor what matters, whether that being spending time with loved ones, learning something new, or stepping up to volunteer in your community or for a cause. We are put on this Earth with finite years of life, and our sand glasses are only so full. Most of the time, we don't know when that sand will run out, and for that reason alone, "carpe diem" is the mantra that should be the order of our existence.

This past year, many children have lost their lives, whether it be to seizures, accidents, unforeseen conditions, or in the face of evil. We must cherish their memories. May communities rally around those who are in the midst of pain, that are beyond what any of us can fathom. My prayer is that these families will find solace with one another, rather than being divided by such a disgusting act of hate, and respond to each other with love. They have a long road ahead of them. There will be fallout. That is to be expected, after such a trauma, not seen coming in, with a loaded assault rifle to do nothing short of commit a heinous crime of unspeakable volumes. Yet we should all have hope. We should hug our children even more tightly, and let those in our lives, who mean everything know how much we truly do love them. May the healing begin for the folks of Newton, and around the world where the ripples of this pain have been sent, and with that wave, not allow us to forget that our days could come crashing down upon us at any given moment.

Sunday, December 16, 2012

The 2013 Angelman Syndrome Calendar is Awesome



I just got the 2013 Angelman Syndrome Foundation calendar in the mail, and I'd like to give a "shout out" to John who makes these. It was done with love, and I smiled upon opening it, seeing so many angels. The calendar is going to be put in our kitchen, so that each day we can look at these beautiful folks, whom we all very much love. I had never ordered a calendar from the ASF before, but wish I had, as it is a reflection of not only who angels are, but the cure that is so desperately needed. There were some tears as I read the memorials page, and yet at the same time, I am proud of their parents for writing so beautifully about their children missed. They exemplified perfectly, how loving angels are, and truly reminded everyone to appreciate each and every moment.

This calendar is of exceptional quality, and I like how its presented, with pictures of angels. Its colorful, and also educational. There is information on there that is helpful, along with what developments are being worked upon, and future events. Yet my favorite feature, is the birthdays of angels being listed upon the days. I smiled looking at the pictures of angels, many of whom I have met, along with those who I've seen online. Their grins just "turned my frown upside down :)", and provided some comfort. As did the picture of Tommy, our boy who is missed, and his picture of him in his ball pit brought joy that I didn't think it would.

If you go to www.angelman.org, you can order one of these calendars. I fully recommend getting one of these, as its a great gift idea for the holiday season. My wife and I enjoy it, and look through it often. Our three year old found Tommy too, which was an experience that we will always be grateful for. Providing that the Mayans are incorrect, as the yogurt in my fridge says good until 2013, this calendar will be a fine reference for putting down information such as meetings and events, and I look forward to going to the kitchen now even more. Thanks again John, as you made our family smile, and its always an honor to see angels, and support an organization that is working tirelessly for a cure while generating awareness at doctors offices and in communities around the world.

Wednesday, December 12, 2012

John 15:13: The Beautiful Words of Jesus



"There is no greater love than to lay down one's life for one's friends." John 15:13. I have always been touched by this passage in the Bible, a book that I still don't fully understand, and there's good reason for using the New Living Standard version. The King James and other editions, are impossible to comprehend. Yet here, clear as day, Jesus says perhaps one of the most beautiful, loving, and inspiring quotes. Whether its in a literal or figurative sense, this is what we all should carry ourselves like, on the journey from birth until its our time to go home. That brave Tbilisi police officer, who years ago, put his life on that grenade to save riders on that train is proof of that very love. Yes he was "doing his job," but yet in that instant that he had to make a decision, he gave his life so that others may live. Fathers, mothers, children all going to school, work, or to a trip to visit friends.

No one ever wants to have to make that ultimate leap of faith, but we all can in a figurative sense. That being supporting our friends, who are dealing with grief, or are in need during the Christmas season. It shouldn't always be "this time of year," but this is the period of the calendar that seems to get the most attention. Right now there are countless people contending with Angelman Syndrome, Rett Syndrome, and other medical conditions that need a cure. The autism spectrum is huge, and by the grace of God, it is partially in our hands to knock seizures to the curb for good. We have the ability to advocate our position, and that line in the sand, that says "we can do something, instead of waiting for someone to do something for us." Complacency is the mother of all battles, and its something we must stave off from. Its fine to take breaks, but the fight must continue on, as that is one of both love and perseverance.

A lot of parents this year are suffering, as they have that Christmas tree in front of them, without their little girl or boy, granddaughter or grandson, niece or nephew, brother or sister. All of us should be praying for them, as this time of year is especially painful. Yet on what John 15:13 brings up, we must love one another. All of us at one point aren't going to see "eye to eye," and there are times that we are at polar opposites on something. That's okay, as we are all unique, human beings. Sometimes battles in life cause one to become ornery, or through pain, can affect the kind nature of our friends that have become distant. Make that connection with them, and forgive. Grudges aren't good for anything, and that's something that took me years to understand, but it really is best for your health to just "let them go." They are extra weight that's not needed.

As we wind the year down, there are many issues on the table. Don't worry about the 12/21 Mayan Calendar, as the food in the fridge says "good until 2013." Instead, let's focus on what we can accomplish this year, and in the next one, that is bound to have medical discoveries that are new. Most importantly, let's shelve the battles of the past, and focus on our connections with one another, as we battle Angelman Syndrome and seizures together. That's right together. Yes, the epilepsy community is a eclectic bunch, but we really are a family. Love one another, as our hearts are needed to be on the same beat, and that is with each other. God bless you, and may we all live these words of Jesus, and may they be in a figurative sense as we work on finding cures and helping out each other navigate the tough woods of life.

Sunday, December 9, 2012

The Angelman Walk: With Tommy and Without




I will never forget my first Angelman Walk, that supports the Angelman Syndrome Foundation. The year was 2005, and it was about eight months after finding out that our boy Tommy had this condition, that is caused by a partial deletion of chromosome 15. I'll be completely upfront, because that first walk was very painful for our entire family. I cried so many tears, seeing "angels," and realizing that this was Tommy's future. He would probably never talk, and seeing so many angels of so many differing abilities, just broke my heart, especially for the older ones that did not have the same early intervention that Tommy was blessed by. I remember my aunt hugging me as I cried, and while I did finish that walk, there were just so many tears.

Yet I learned a lot during that walk. While not a "trail of tears," such as the Nez Perce had to endure, it was with heavy shoes. Each couple hundred of feet, was a sign that showed what Angelman Syndrome was, and I learned from these a little bit more. Yet what I felt meeting other parents, and angels, cannot be described in words. Rather I felt a kinship, a family that I had not meant, but was glad to have in my corner. The first walk I attended was in Chantilly, VA, and this of course for the Washington D.C. Baltimore area, has now been moved to Columbia, MD. It takes hundreds of volunteers, and thousands of hours to set up these events, and I am grateful for those who've spent the time doing this.

Back then in 2005, if I remember correctly, there were only about nine walks throughout the USA. Now there are over twenty, where families can get together, and to meet up in person, along with sharing strategies to help their little girl or boy do the best that they can. I am forever indebted to so many who reached out to us, when we found our son's diagnosis, and the Angelman Syndrome Foundation provided us with a wealth of information. True we had some luck on our side, as our pediatrician already had an angel in his practice, but many medical professionals rely on information from the Angelman Syndrome Foundation. That is why there aren't so many "What is Angelman Syndrome questions" anymore, although much work still has to be done in this regard.

I have enjoyed each walk. Last year I skipped out on, as I was severely depressed, about Tommy's passing. Yet I look forward to going to this years, as I have with and without my boy. In 2011, it was a joy to be the kids entertainment dude. Yeah, I never thought that would be my forte, but it was fun just having angels and their siblings dancing around, along with singing karaoke. Getting those angel hugs meant so much, because while there were tears, many of them were with a joy that's impossible to even describe. Yes, the tears went down my face, but there was a smile with them. Each year there have been more families attending, and I'm excited about the one to be held in May of 2013.

This is the time of year, when our holiday spirit must be in full force. If you can donate to the Angelman Syndrome Foundation, you are helping so many families, along with research that is happening at breakneck type of speed. There have already been some discoveries, and with each one, its a building block for what all families want, and that is a cure. As the end of 2012 rolls, this is a great time for giving, because not only will you be helping out people with Angelman with a donation to this foundation, that is the largest non-governmental research contributor to finding a cure, but you will also  be able to make a tax deduction on your upcoming headache from the IRS. It is a win-win, and there are also calendars available, that show children and adults with Angelman Syndrome, that will lighten up the mood of even the biggest Grinch in the world.

Going to the walk without Tommy, always leaves an empty spot in my heart. Yet I must carry on in his honor, along with all of those angels who've gained their wings in Heaven. Today his younger brother was asking all about him, and darn right he will be at the National Walk this May. He will get to see angels, and may he get those hugs, along with seeing those smiles and laughs. I believe very strongly in the Angelman Syndrome Foundation, along with families who have gone to great lengths, to make it is what it is today. This is on charity navigator, completely transparent, and full of love. Thank you to all of the folks at the ASF, along with the countless volunteers, parents, and families who've supported it over the years. On to a cure.

Saturday, December 8, 2012

UBE3A Gene: Why This Is Important in Seizure Research



According to Dr. Olson, the UBE3A Gene is responsible for seizures in people with Angelman Syndrome. This has been known for years, and recently groups like the Angelman Syndrome Foundation, have been putting money into research to look at this angle. They are of course located at www.angelman.org, and are the biggest non governmental entity, with regards to researching this medical diagnosis. So what's the big deal about the UBE3A gene? Well, considering that its been isolated, this could not only lead to seizure treatments for "angels," but for people with generalized epilepsy as well. This gene has been shown in people also across the autism spectrum, which why at all haste more research needs to be done, and the sooner the better.

I have been trying to learn as much as possible about this particular gene, and how it has been researched at places such as UNC Chapel Hill. It is with profound interest, if finding a way to develop this in mice and other creatures, could lead to breakthroughs for human beings. While a lot of the scientific journals are above my head, some of what I have read and digested, has been encouraging in many regards. The coming year I hope there are more discoveries, along with a way for this UBE3A gene to develop, some anti-seizure methods that can not only stop people from having seizures, but ultimately save lives. 50,000 plus people per year die from seizures, and its time that number is dropped closer to zero.

The researchers who have doctorates from prestigious schools, have accomplished so much, and with the advances of technology there's no doubt discoveries are going to be made. Yet even with this information, we cannot be complacent. Rather, we must continue to let our legislators know of the importance of medical work, as it is a moral battle that can ultimately save lives. If this gene is prevalent to angels and those across the autism spectrum, where seizures are common place, then it may lead to work that can help everyone. That's what matters, and from my heart, I hope that people will be generous towards groups like the Angelman Syndrome Foundation, and other organizations that are working for a cure. The road has not been easy, and the cure has not come soon enough, for too many children and adults with this condition. Yet we must not give in, and sit on our laurels, but rather roll up our sleeves and make these discoveries continue to grow in abundance.

Thursday, December 6, 2012

Tom Grooms, The Spectrum Show, and Cumulus Media


It was both an honor and privilege, to participate in a broadcast with Leigh Sutherland and Devar Burbage the other day, about Angelman Syndrome research on Tom Groom's show "The Spectrum." This show should be airing this weekend, at times still TBD, but even if one family gets information, then that is a battle won. Tom Grooms is one of the kindest men I've ever met. In this age of "move out of the lane," mentality, Tom stands out from this in stark contrast, as he has a golden heart. I greatly appreciate his compassion, and the fact that he gets back to a guy who uses an email account of toiletoctopus. Yet there's more than that, as he's been a strong supporter of Autism Speaks, and the autism community can greatly benefit from the work being funded by the Angelman Syndrome Foundation. Even those with epilepsy can, because a lot of the work on the UE83 proteins that might trigger seizures, and has been shown in people with autism, can one day get more answers and hopefully a cure.

The research at the University of North Carolina Chapel Hill, and other institutions is phenomenal. There they are creating mice with Angelman Syndrome, and using already FDA approved drugs to cure them of this condition. Now, that's not to say a cure is going to happen in 2013. Yet it is a established start, because a lot of medical discoveries, are started off in labs with rodents that I've become thankful for. Perhaps the next one in my house, will get an "official pardon." Seeing Leigh and Devar is always a joy, as they have fought for years, spending thousands of hours volunteering to help families out, and to find ways to generate awareness and fundraising for a cure. They've also been greatly supportive to our family, as while Tommy passed away due to an Angelman Syndrome seizure, they are people whom I trust very much so.

There are no words that I can type, that can convey how I thankful to both Tom Grooms, and Cumulus Media for allowing this opportunity. This holiday season has not been easy, as Tommy is on my mind and in my heart every single day. Yet for a few moments, going on air, it at least provides some hope. If just one family finds out their child has Angelman Syndrome, or if someone with scientific experience hears this and says "A ha!", that will be a beautiful moment indeed. WMAL 630 Woodbridge Washington, deserves a lot of credit for allowing such a show, that offers citizens an opportunity to bring much needed information to families around the D.C. Baltimore area, along with the rest of the country through podcasts and other technologies. Here is the information for the show:

http://www.mix1073fm.com/Article.asp?id=2308571

Thank you Tom, and one day may there be a cure for Angelman Syndrome, Autism, and Epilepsy.

Sunday, December 2, 2012

The Holidays and Grief








The Christmas and Hanukkah seasons are upon us, and may they be full of cheer for people around the world. Yet there are some folks, who dread this time of year. That would be parents, grandparents, brothers, and sisters who have lost a child in their family. The empty seat at the Christmas table, or the spot where mazel tov! was yelled, can bring up painful memories from the past. The commercialization of the holidays brings further pain, and having to visit your little boy or girl at their gravestone, is heart wrenching even more so. Yet you've got to continue to celebrate the holidays. That's what everyone says right?

Our first Christmas without Tommy was beyond hard. We decided as a family, to do something that we had never done before. Looking back, this was a wise decision, and that was to go skiing on Christmas Day. The change of venue helped immensely, and being active in the outdoors offered some solace. Yes we felt the pain, but it would have been more so, if we hadn't gone to the ski resort instead of staying at home. Our pictures from that Christmas show smiles, but those only were masks, for what really was felt deep down.

Alcohol and foods can be your worst enemy. While I still only go out and get loaded occasionally on booze, after Tommy's passing I put on a lot of weight. It was a shocking amount, and while I still carry a few extra pounds, I warn parents going through the grieving process that this might be an outlet that is unproductive. Frankly, I just didn't care at the time, and ate whatever crappy foods were available, and I ate them in abundance. It was like waving my middle finger to the wind of health, and in retrospect perhaps I could have done something worse, but emotions of pain would trigger a desire to eat in large amounts.

This is a tough time, and there's no way around it. I've felt it this year, at Thanksgiving and with Christmas just around the corner. This year I am better "prepared" for the deluge of emotions, but they are there, along with the tears. I look at Tommy's younger brother, and I see him, which brings a small amount of happiness that cannot be explained in words. Seeing him smile at the Christmas lights, reminds me of the trips we used to take with Tommy, when he would be in awe of the displays. This Christmas will be fun, as we celebrate as a family, even though there is that empty seat at the table. The squash that Tommy loved so much will be eaten, and we will all miss seeing him go after the Christmas wrapping paper, that he played with for hours. Yet we carry on, as other families do at this time of year, and I wish you all the happiest of holidays. Merry Christmas.

Friday, November 30, 2012

Death of a Child: Three Years And Out




It has been a little over three years since my son Tommy passed away, on that terrible night of November 4th 2009. That date has been seared into my consciousness, and will remain so until its my time to depart this world.  I don't know when that is of course, but until that very moment, I believe it is important to be more open about death. Death. A five letter word. Something that is uncomfortable for all of us. I used to be scared of it. While I am a fatalist in many regards, you won't see me jumping out of a plane, without a parachute strapped to my back, along with numerous tranquilizers before making that leap. In many western societies, speaking about death is taboo, as if we live forever. Yet that is not the case, and the importance of embracing life, and living it to the fullest is no cliche. Rather its a mindset, and one that I've gained in growth with, even after going through a parent's worst nightmare.

Everyone handles a tragedy differently, and there's no right or wrong way, provided that you don't cause physical harm to yourself or others. If you are suicidal, by all means, call an established hot line to get help. This is a common occurrence after the loss of a child, and I want to tell you that life is so very valuable. You will not get over your child's passing. Ever. Yet you can get through it. After Tommy passed away, my reaction was one of primarily anger. How could my son be dead? What did an innocent five year old do, when I've been nothing short of imperfections throughout my whole life. My anger grew into pure rage, as I often lashed out at people, and would be so rude to folks that truly didn't deserve it. I am sorry that I acted in such a manner, and it is me, myself, and I that are completely responsible for that.

What have I learned from my son's death? A lot. More than I ever knew. I'm still learning, and look forward to each day with renewed gusto, along with more appreciation for the simple things in life. That adage of "looking at the flowers bloom, or watching the tree leaves change colors," is not a joke anymore that I scoff at. Rather I just take it all in, whether out in the woods, or fishing at the river. I laugh a lot more than I ever have, and truly just "enjoy the moment." A recent day in the woods was proof of this. Years ago, I was so hellbent on being competitive in everything. I came up empty with deer, but yet just admired sitting in that blind, the sunset, and sitting in the dark, eerie woods until I was picked up from my location. Before I would have been bitter, yet I left happy as a clam, knowing that I just had a special day that I still treasure as these words are typed.

Do I still have bad days? Yes. Often I cry, and that's okay. I fully recommend it, and to you guys who say that you don't, that's fine but I know you do behind closed doors. Its more than healthy, and will help you clear your thoughts, and go through the stages of grief. These include as Dr. Elizabeth Kubler Ross so perfectly laid out, "anger, sadness, denial, bargaining, and acceptance." They don't have to be in that order, but they are all there when you lose a child. These days I no longer have to force myself out of bed, but those days when I did, they got better. Do I have flashbacks? Yes. Terrible ones that have left me shaken to the core. When you go through the loss of your boy or girl, there is going to be collateral damage, as its a trauma that no one should ever have to go through.

Yet I have learned to live with it. I accept that my son Tommy is gone, and while I know in my heart of hearts one day that we shall be reunited, I must continue to go on. It is my responsibility to be a father, husband, and just a simple guy who does what can be possible. During my period of rage, I thought that I could do anything, and it was beyond psychotic. It was my way of "bargaining", and while I will not give up on finding ways to fund epilepsy awareness or to generate funds for that cure, at the end of the day I cannot wear myself out physically, mentally, and emotionally. That was done, and the fallout from it, was a painful experience that I would not like to replicate. At the beginning of every sunrise, until that sun sets, I am only capable of so much.

There are a lot of families going through this Christmas season, with that empty chair at their table. My heart is with you, as are my prayers. I hope maybe this helps one of you, at least understand the peeling of the onion that has to be done, and perhaps a person out there will realize they have so much to live for. Life is truly great. It is a treasure bestowed upon us each and everyday, and while there are good and bad days, all of them have lessons for us. I'm not going to tell people how they should handle the trauma of losing a child, because each of us are unique individuals, but I do believe in the honest approach. It sucks, it hurts so bad, but yet you must carry on. Whatever means it takes, to get you back in your bootstraps, I won't judge you, and nor will anyone else who's been down this road. You will find out who your true friends are, and there might be some lost along the way. That is fine, as each person has to make that decision, when the time of tragedy strikes, and deal with it in their own manner.

Thursday, November 29, 2012

WCAX in Burlington VT: Lump of Coal in Your Stockings




WCAX in Burlington VT is an affiliate of CBS News, and is run by the Martin Family. They have done numerous stories on children with disabilities, and yet they deserve a stocking full of coal this Christmas season. True they can pick what stories they want to cover, as its common knowledge that they depend on a combination of ratings and advertising revenue. Yet a young lady in their viewing area needs their help, and their News Director has a child with Rett Syndrome. He has my sympathy, but he has far to garner my respect, as if his daughter had metal rods protruding out of her back, causing her to scream at all hours of the day and night, then he certainly would be doing everything in his power to put her into a broadcast. Yet he has failed to do the same for Lisa Anne Weaver, who has tirelessly been trying to get help for her daughter Ashley. There may or may not be folks above him, who have said no, but I have the feeling that he's not willing to throw his weight around. The same can be said for the Martin family, who refuses to answer my kind emails, but I'm happy to report the folks at White River Toyota in Vermont and others who advertise with this station are.

They are most displeased, with the fact that the channel has wrote Lisa Anne a letter, that they can't do "too many human interest stories." Really? Isn't that what we are supposed to be covering, our fellow human beings, including a young lady who spends all day and all night screaming? How about her Mom, a single mother who does everything from working full time, while going to school, to give her daughter an even better chance at an improved life? She has spent hours with specialists in the field, to help her daughter's suffering, and her resilience is nothing short of amazing. Yet what is sad, is that WCAX in Burlington, VA has a show called :the 30, where they have had stories about Down Syndrome, and other conditions. Yet they say again "we can't." Really?

I find WCAX's lack of empathy disturbing, especially considering their news director has a daughter with Rett Syndrome. Therefore, I will like Lisa Anne not rest until her story is aired, and I'm hoping a few folks out there who "are willing to do a good turn" will voice their displeasure on WCAX's facebook wall at http://www.facebook.com/WCAXTV?ref=ts&fref=ts. This life hands us all a lot of challenges, and its up to us to stand up for what is right, or cave in and just let things occur at a standstill if we are weak. Yet I believe in the human spirit, that quest to never give up, and most of all I trust Lisa Anne, who is an angel in every sense of the word. Her daughter's seizures, pain, have been heard, and now action is required.

You are not being asked to move "the heavens and mountains." Instead, all I'm asking is your help, in letting WCAX in Burlington, VT, that you believe that Ashley's pain has been heard. If you can kindly suggest, that they cover her story, it would be the best Christmas gift you could give a young lady who's in pain that few of us could ever comprehend. It would give her mom some peace during this holiday season. She has written on this blog before, and her piece on Rett Syndrome moved me to tears, and I am frankly inspired by her courage. She is a single mom that does not give up, does not yield, and by God we must all do the same. This is a time that we toss labels aside, such as what a condition is, and back her up. She is working hard with Children's Hospital and other specialists to alleviate her daughter's suffering, let's do the same for her with regards to WCAX. Its not only the right thing to do, its a good turn that all of us can be involved in, and generate not only awareness, but show that we as human beings are capable of doing great things that are relevant to people across the world.

Wednesday, November 28, 2012

65 Million People Have Epilepsy




Sixty five million people have epilepsy. That number shocks me, and one in ten of us is going to have a seizure in our lifetime. Numbers fail to tell the story though, because hundreds of thousands of people each year, die from this condition that so needs a cure. One of them was my son, and many others have experienced this horror, or in the prime of their lives been taken from this earth due to a seizure. I am a fan of the NIH, because this is one governmental organization, that has been effective with regards to medical research. They have developed a lot of new treatments, but still have a ways to go, just like other facilities that are working tirelessly around the clock. It bothers me, that only 1/2 of 1% of U.S. government funded money, goes to epilepsy research, when it affects more people than other afflictions. While some may say, there's a triage of sorts in effect, I counter that with the slice of the pie dollar wise is unfairly small.

Right now there is a mother watching her child have hundreds of seizures a day. A father cannot go to work, because his epilepsy medicine, while helpful, is allowing breakthrough seizures that leave him in bed. Another family is burying their child, because a seizure took their precious loved one from them. The economic costs as well as the pain produced by epilepsy, are impossible to calculate with any set number of dollars. Imagine if one day this was cured, so people with this condition, could fully live life to the fullest and be even more productive citizens? I am in awe of those who have epilepsy, because while they do suffer, they do not give up. Ever. They do the best that they can, trying to avoid so many potential triggers, that their lives could be described as walking through mine fields.

In the U.S. and other countries with access to medicines, there has been progress. Yet people in these lands suffer, and those who are in areas with limitations, death is even more possible. It does not have to be this way. All of the modern marvels we so appreciate, are proof that we can find that cure, if the resources were made available. If you can spare a moment, write to your legislatures and inform them of the importance of a cure. What it means to you, because the more voices that are heard, they cannot ignore the masses. Silence is unacceptable, and a means for failure. In our lifetimes this cure must be developed, and if Steve Jobs' premonition of technology and biology coming together as never before holds true, then we might come to that cross roads. Yet there still is heavy lifting to be done, and not another moment or life, must be lost to seizures.

Saturday, November 24, 2012

The Great Outdoors: Spiritual Refuge for Many



Simply put, I have loved the outdoors since probably before I could walk. While everyone has their own favorite place, that helps to bring them even more alive, there is no better place to be than out walking on hundreds of acres of farmlands and woods. This past week out hunting, I did spend a lot of time looking for my quarry, but also there was a decent amount just enjoying "the moment." The past month has been difficult, as it is the third anniversary of my son Tommy's passing, but yet I am grateful, and in awe of the beauty God has provided us. I thought a lot about him out on the grounds I was on, which were once where bloody civil war fighting occurred, and there's a house on the property where Robert E Lee slept. It was eerie as night fell, and yet at the same time, the day was a joyous one.

Each person grieving losses in life, has to find a place where they can call a sanctuary. Whether that is a church, out on the golf course, or any spot that makes them comfortable, that is essential to your health and keeping your spirits up. Watching the sun rise over the horizon, a bear off in the distance on top of a ridge, and having a mouse in my hunting blind were a lot of fun. Getting the chance to just simply take in the beauty of the Virginia countryside, while walking around the thickets, was something that is keeping me going this morning. While I wish I was still there, a part of me still is, as just thinking about this area keeps my heart full of passion, along with reminding me of the blessings that all of us have.

Its so calming, to just be in an area with no cell phone coverage, out in the middle of nowhere. You really think about life in another perspective. I thought a lot about just all of the blessings over the year, and also about my boy, who I do miss very much. There were no tears here, but rather just solemn prayers and appreciation for the chance to be out here. Parents who have lost a child, I highly recommend finding a place like this. They are everywhere, no matter what state or country you live in. Get outdoors and just spend a day in solitude. It is very refreshing, and a way to realize what is important. That is not getting over the loss of your son or daughter, as that is simply impossible, but getting through, and realizing that even after tragedy, you can grow in ways that you never thought possible.

Wednesday, November 21, 2012

To The Parents in Egypt Who Lost Their Children




لا يهم ما كنت تعيش في بلد، ما هو دينكم، أو إذا كنت تعتقد أم لا. كان قلبي الثقيلة، لشعب مصر، الذي خسر خمسين طفلا في اليوم الآخر. حتى والد الطفل الذي فقد، الذي عقد يديه كما تم إيقاف CPR، لقد تذرف دموع التفكير في ما كنت قد ذهبت من خلال. أعتقد أن كنت فتاة وضع الثمين على أن الصبي أو الحافلة، من أجل حياة أفضل المدارس، فقط يكسر قلوب ببساطة بلدي، حيث يشعر بك الألم كثيرا.

هذا هو أشد إيلاما، كما أعتقد من تومي لي غلام، وإلى أي مدى كان يحبها الحافلات. كانت رموز الحب بالنسبة له، لأنه ضحك حتى وابتسم عندما رأى لهم. غنى سائقه حافلة عيد ميلاد سعيد له، وعلى الرغم من انه كان الإعاقات الذهنية الشديدة التي تسببها له التأخير العقلي والمعرفي، وجهه عندما أضاءت التي تحولت الحافلة الزاوية لنقله إلى المدرسة. أنا لا أعرف ما هي الألوان من الحافلات في مصر، لكنها الصفراء في الولايات المتحدة بالنسبة للجزء الاكبر.

لم يسبق لي أن اجتمعت أي واحد منكم. بعد يكسر قلبي لك. هناك أغنية نيلسون ويل، ودعا "لقد كنت دائما في ذهني." هذا الاسبوع كان هذا ما شعرت في قلبي من القلوب لك. حتى الأب من كان على الطريق من فقدان طفل، لا أستطيع أن تبدأ في فهم الألم والدموع، والكرب الذي سحق كنت على الحق الآن. بعد أدعو لك كرجل بسيط، وأنا أردت فقط أن تعرف أن

Fire and Rain: Joy and Pain


Years ago, if someone put James Taylor on the radio, I'd probably be thinking about knocking their teeth out. To say that I didn't like his music was an understatement, as I simply thought it was wimpy, whiny, and worthy of being thrown into a gigantic trash can. Yet with some age, experience, and challenges, I find comfort in "Fire and Rain." There is just something about this song, and often it plays on my car stereo, as I drive to and from work. I was shocked by all of the interpretations, that people have come up with for this song, and for many they believed that it was about James Taylor's girlfriend who died in a plane crash. That simply is not true, as I found out that he wrote this song, as he faced his demons, that were profound depression and drugs.

I've seen fire and I've seen rain
I've seen sunny days that I thought would never end
I've seen lonely times when I could not find a friend
But I always thought that I'd see you again

The holidays, Thanksgiving and Christmas, are a rough period for our family. There is that empty chair, where Tommy would be if he was alive. Yet, the only place that he can be visited, is under a huge tree in his burial plot. Today I had flashbacks to that terrible night of November in 2009, when I held his hand, as the doctors stopped CPR. Of all the tears that came out of my eyes, the room was so silent, that you could have heard a pin drop. The shock of losing my five year old boy, was so stunning, that I simply did not know what to do. Other than just cry, I sat there in complete paralysis, as did not want to let him go. Yes, I knew the EMT's and doctors did everything that they could have. Even at the time I realized they gave everything they had, and I sit here grateful of that. It was not easy on them, as they are fathers and mothers too.

Tonight I drove home to this song, and hit the right spot. It provided comfort, and a bit of reflection on those flashbacks that showed up. All of the pain of earlier seemed to have been wiped away, and even though there will be more fire and rain in life, I have learned to accept Tommy's passing. Its not been simple, and there were tears today, and there will be more, just as the sun rises and sets everyday. I have been doing a lot of thinking lately, about what needs to be done in 2013. There will be efforts to raise awareness about epilepsy, as I am still blown away that 65 million people around the world contend with this condition. Expect to see a lot of purple on a bike trip, and if this knee that's recently been worked upon again heals more, there will be an extensive journey taken down the entire C+O Canal. There will be running, with a shirt that says "Ask Me About Epilepsy."

Our entire family has suffered, yet we are not alone, as there are countless members of our fellow human beings who have been down this road. Its not the easiest one, as there are twists and turns, along with a sense of emptiness and purpose at the same time. That may not seem to make sense, but that is the new reality. Life gives us all "fire and rain," as there's no easy ride, and all of us have our struggles that we must contend with. Just like Giles Cory asked for "more weight," we all have that luggage that tugs at our heart strings, and makes us question exactly what we are doing here. James Taylor provides the answer. That is to "make a stand." It does not have to be anything special, but rather it has to just be from the heart, and with faith and resilience through the tears and the smiles.

Monday, November 19, 2012

Cataclysmic Events: You Never Know When


Cataclysmic events shock us, as we never see them coming. This past week, 49 school children in Assuit, Egypt died in a bus, as a train collided with it. My heart breaks thinking about their last moments on this Earth, and the devastation that all of their families are going through. They were putting their children on that bus, just like so many of us around the world do everyday, expecting their boy or girl to get a decent education. A mom put an apple in that bag, a Dad kissed his daughter goodbye at the bus stop, having no idea that this would be his last opportunity. Tragedy strikes when least expected, and while its going to take time for the Egyptian Authorities to figure out what went wrong, there are lives ruined forever. These parents, siblings, aunts, uncles, and friends are going to be entering a challenge that they never foresaw.

Dreams ended with that impact. The same could be said for seizures, that have crushed those of children and adults who have epilepsy. Just like the power of a freight train, they have taken far too many kids away from their parents, or too many adults living productive lives away from us. Well over 100,000 people die a year from epilepsy. I don't have the exact figures, but 1/2 of that number is in the USA alone. A father, a mother, son, daughter, or friend gone. It is morally reprehensible, that only .5% of medical research funded by the US Government, is devoted to epilepsy research, when roughly 5% of the population contends with it at one point of their life. More people have epilepsy, and die from it, than so many other conditions that get a whole lot more funding.

The epilepsy community across the world,  has been railroaded, and its time that we climb from the caboose to the engine. I am proud of organizations and researchers, that are working around the clock for that cure. True, there are many different types of seizures, whether people are born with them, or experience them after sports or combat trauma. There are so many triggers for seizures, and these can cause the brain to get the irregular signals associated with epilepsy. Far too many parents have had to suffer the heartbreak, of hearing their child died from a seizure, found their little on in their beds unresponsive, or had to make the toughest choice of all by pulling life support. Each of these lives are valued, and all of those lost are dearly missed. There are people around us, I am one of them, who has the scars of a child lost. True you might not be able to see them, but they are always there, as each and everyday I wake up knowing my Tommy is no longer with our family.

This train wreck hit home. While I cannot say that I've had to suffer like these parents in Egypt, I understand a bit about the road that they are going to face. Especially the "if only's". There are so many grieving moms and dads, and my prayers have been with them, since this awful tragedy. They are going through a living hell, and all of us should be thinking about these folks, who just a few minutes ago had seen their children alive and well. الكثير من الحب وكثير من الصلوات لأسر، والمشاركة في مأساة قطار المصرية.

Saturday, November 10, 2012

To Those Who Have Lost a Child




If you have just lost a child, my heart is with you, as our family has been down this painful road. A little over three years ago, our beautiful Tommy departed this earth, and not a day has gone by that he's not thought about. Bits and pieces of that terrible night, still continue to linger, as memories that can conjure up tears at a moments notice. There is no getting around the anger, grief, denial, bargaining, and acceptance. Dr. Elizabeth Kubler Ross was correct about this, and it is going to challenge you, like a knife through the very essence of your soul. You will never get over it, yet you can get through it. For siblings and others, I highly recommend age appropriate honesty. That is the only way to grasp the significance of what has happened, by facing the harsh reality, and admitting that you have been thrown a punch to your life that you will never fully recover from.

Yet, there is hope. I am deeply thankful to so many, who have helped me keep my moral compass, "righting the ship" for better words. Life has changed, but yet I am still content. In some ways, I enjoy everyday even more now, as each day no matter what is a blessing, it is to be savored. Anniversary dates are painful yes, and many tears are shed at these times. Yet they are times for self-analysis, and reflection about what my son means to me, and how I can be a better man. Each person handles grief differently and that's okay. Its what makes us human after all. There are so many walking with you, millions of us across the US and around the world, are going through this experience all of the time. The adage "everyone dies" is true, yet even through the most painful of losses, you can gain knowledge and new lenses that allow you to see in a completely different way.

Embrace life. Sometimes this is easier said than done, but really it is imperative. There will be a "new normal," and it does not have to stink. Will there be days that you don't want to get out of bed? Yes. Yet at the same time, you will learn to understand the beauty of the most simple of things. I used to laugh at folks who said, "Spend time to smell the roses." It sounded cheesy, and in my opinion ridiculous. Yet its true in a figurative sense. Just going on walks in the woods, and looking at the beauty of the leaves changing recently, was a good way to spend a day. Sitting with my fishing pole by the river, and not catching any fish, was a perfect time. As the waves rocked the pier, I just found a "little slice of Heaven", even if my bucket was empty my heart was not.

You have been given the greatest challenge, by having to go through the loss of your precious daughter or son. Its up to you whether faith is important or not, as each person has to decide for themselves whether that is the correct avenue. I'm not a preachy guy that's going, to ram it down your throat, but I do believe in something greater and bigger than all of us. Do I know why to many questions, including why my boy passed away? Nope. Yet when that wind blows when out camping in the woods, or I've met people like Brother Bill, who fought his life with dignity through the horrors of Jim Crow, having his father leave his family at a crucial time, serving on the front lines of combat, losing a child, and now protecting a church I am inspired. I hope that all parents who have gone through this pain, can meet their "Brother Bill," who steps up at the right time, to help them realize that there is a path that can be taken. Acceptance is hard, it takes time, and there's no clock on it. Yet when it does happen, then you will as Dr. Kubler Ross writes " that person who has been changed for the better."

Saturday, November 3, 2012

Three Years Since the Death of my Boy


Three years ago, my son Tommy passed away from an Angelman Syndrome related seizure. It has been a difficult journey, one that I would not wish upon anyone, and this wonderful boy is missed by his parents, grandparents, uncles, aunts, cousins, and friends. Our entire family has shed a lot of tears, more than enough to fill gallon size buckets, but we are still standing. We still love one another, and carry on Tommy's spirit with us each and everyday. This weekend is painful, as it is a reminder of that awful night, as no parent ever wants to find their child unresponsive. To sit next to your own flesh and blood, on a hospital gurney as his vacant eyes, look up to the Heavens is the worst place you can ever be. That night is still a flurry of jumbled thoughts, and powerful emotions that still permeate to this day.

Other parents and families across the world, have been down a similar road. Everybody dies, and while the loss of a child is the worst scenario for any parent, I am a content man in many regards. I don't want nor expect any special favors, but I am glad that the anger has abated. That was my prevailing theme for a long time, as I was just furious about how my son could be taken from us, and how at only five years old he was gone. Its not fair, there's no denying that, but it is the reality. The sadness, that baggage that accompanies such a loss, is sometimes heavy but lifting is required. At the same time, I see life through new eyes, a different perspective than before. While I still do complain, it takes a bigger haystack now. Dealing with what used to be difficult, I often laugh at how trivial it was.

There have been tears this past week and in the last few days, and that is alright. I went to Tommy's grave yesterday, and felt sad that another child's burial spot was just established on the grounds of the cemetery. My heart aches for this family, because even though I do not know them personally, I understand their pain. Each of us handles grief differently, but that soul searching, bottom of the barrel hurt that accompanies such a loss, is akin to a tornado ripping your heart from out of your chest. While the cemetery does bring me a sense of peace, with the wind chimes in the tree that overhangs where so many children lie, I just take in the amount of graves that are occupied by so many children.

I wish that everyone could live until one hundred years. That's not up to us of course. Instead, life is full of mysteries. There is joy, pain, and everything in between. Yet even with that sorrow, I have come to the conclusion, that each day is a blessing and should be treated as thus. You never know, when it will be your day, or someone you love's time. Each step on this earth, every breath of oxygen, is not something to be taken for granted. Rather, it is a gift. I do not know what the future brings, but I am thankful to my wife and entire family, along with other folks who have different last names, but are family in every sense of the word. My hopes, my prayers, are for all children with Angelman Syndrome and other conditions that can lead to such a tragedy, to find that cure that so many parents around the world want for their little girl or boy. Their cherished angel. Be sure to love them, and give them an extra hug. Let them know what they mean to you.

Thursday, November 1, 2012

A Nickel Spinning at the Restaurant



A nickel spinning. That five cents with Jefferson's head prominently featured on the front, and the back his beautiful Monticello estate. In a world that pays with plastic, this metallic piece is hard to come by. Yet there it was spinning in front of me at a restaurant, as I reached for my wallet, and it dropped out on the counter. Five cents doesn't buy you anything, but five good years of life are a blessing. Three years ago our boy Tommy, succumbed to an Angelman Syndrome related seizure, and he is missed every single day. Seeing his clothes, looking at his pictures, or even hearing a song that he used to bounce around to, it cuts like a knife.

It was so painful prior to this nickel spinning, in a toy store, as the song "When You Wish Upon a Lucky Star" played. Last night his younger brother and I watched Pinocchio, and I couldn't help but think, Angelman Syndrome used to be called "Happy Puppet Syndrome." That is of course derogatory now, but in many ways, Tommy was the happiest human being I have ever seen. He just lived life to the fullest, whether it was riding a slide at the pumpkin patch, or playing with Christmas paper. I wish that as a human being, I could be like him, or other children with Angelman Syndrome. They are the best people I've ever met, innocent souls who do not do anything to ever harm another person. Their world is one with laughter, smiles, gusto, and a determination that is hard to put into words.

For five years we were lucky to have Tommy. Even with his passing, and the great sadness that has followed, I still believe in the goodness of people. My faith has been tested, to a degree that I wish upon no one, but I must carry on for his younger brother's sake, along with my family's. That spinning nickel so personified what it feels like, to go through the pain of losing a child. Three years out, and while the anger has subsided, that pang of grief can turn on at the drop of a hat. Anniversary dates such as Tommy's birthday, November 4th, and Christmas are particularly brutal. Sometimes he feels so close to me, in the essence of my soul, and yet at other times he's a distant memory. Yet he is always there, in my heart, and until my last breath I will never stop grieving.

I don't know what lies in the road ahead, other than there are no guarantees. Each and everyday alive is a blessing, and I'm grateful for each and everyone, whether its full of joy or in deep sorrow. It has been a learning experience in many regards, and I see life with a new set of lenses, which can be both good or counterproductive. Yet there are so many, that are among us, who have walked this trail. They have heavy hearts, pain that will never go away, and to parents who have just gone through such a tragedy, my prayers are with you always. You will never be the same. That is a given. Yet much like that spinning nickel, this one with the date of 2003 when Tommy was in the womb, this world is full of possibilities and challenges that have yet to be completed.

Wednesday, October 31, 2012

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.

Sunday, October 21, 2012

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.

Friday, October 19, 2012

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.

Wednesday, October 17, 2012

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.

Saturday, October 13, 2012

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.

Wednesday, October 10, 2012

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.

Saturday, October 6, 2012

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.