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.
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.
Thursday, March 31, 2011
Suck Feizures? Get the Shirt and Help Vanderbilt University Find a Cure
Suck Feizures? That sounds a bit odd, does it not? Well it should, but its an obvious play on words, when you reverse the "S" and the "F", and put them in those spots. Too strong? Well, if it is I do apologize, but do not expect any sympathy towards seizures, or the pain they have brought to so many. The idea for the words "Suck Feizures", is a play on my old "Yuck the Fankees," joke, in reference to the New York Yankees. To those who follow the team, I am a proud member of Red Sox Nation, and have endured eighty six years of pain. Actually, I didn't go quite through that, but I was in my thirties before I got to see the Sox win. And to be honest, I thought it was a dream, and bought several newspapers the next day to confirm it. To my 'friends' who wear pinstripes, you have plenty of rings, so please accept this as a treaty of sorts.
It does not matter if you are a fan of the Boston Red Sox or the New York Yankees, even though Red Sox fans have more class :). You could be a Washington Redskins fan, or a Dallas Cowboys fan, and yet have something in common. Sure, we get riled up about sports, and that's a wonderful thing. I make no bones about it, that I've almost myself gotten into fights at a hockey game, even though I wasn't on the ice. A side note-there's a joke I like, that a co-worker says about hockey. "I went to a fight, and a hockey game broke out." That's actually true in many cases. Fight. A fight doesn't have to be with punches, kicks, and well placed elbow slams to various points of ones body. It does not need anger either, although when anger is used productively, it can be a powerful force.
Yet nothing trumps love, and you can fight with it. This does not make you a wimp either, as love is so powerful, that no one or nothing can touch it. No one can take away your love, unless you choose to allow it to be removed. Until my very last day on this Earth, until my very last breath, no one can take away the love I have for my son Tommy. He passed away November 4th 2009, and it has been a journey that I would not wish on a worst enemy, if I had one. Yet I am comforted knowing that he's being cared for by God. It cuts you down to the core, the pain that you'll experience with the loss of a child. I hope you will understand that this is not a callous statement, but children do die everyday. Children also have seizures everyday, that greatly affect their quality of life, and these as per Tommy's case, can be lethal.
I'm a simple man. At work I wear a nametag and boots, and my acaademic interests other than reading, are enjoying the great outdoors. While I may do well on Jeopardy, I am not going to ever go to Harvard, unless walking by it, and I will never be a doctor unless dressed up as one on Halloween. That is fine, but I do believe that each person, regardless of background has the ability to connect with others and do something. It doesn't mean strength or perfection, but rather what we were put here on Earth to do, and I plan on doing it. A cure must be found for seizures. I will not be the one who makes the discovery, and frankly, I don't give a damn. Yet what I do care about, is being able to be a catalyst of sorts, and so many are already doing this right as this is being typed or you are reading it.
How can you help make seizures a menace of the past? Simple. Go to Vanderbilt Kennedy Center's Angelman Seizure Project. There you can see what the research team has been able to accomplish, and what is just around the corner. Educate yourself on what they are doing, and spread the word. If someone brings up seizures or anything related to them, tell them about Vanderbilt University's efforts. Are you thinking "Angelman Research?" If so, it is related to those who have Angelman Syndrome and the seizures associated with them, but this work can branch out to help others that have other medical conditions. You can also join the efforts, by talking to the folks at the University, and bringing them into your houses of worship or businesses. We are all affected by seizures, whether we experience them ourselves, or love someone dealing with an epilepsy related condition.
There's a very simple way to help. Go to http://www.angelsonearth.net/Tommy-Collection.html. Order yourself a shirt from AOE-Angels on Earth. Each one of these shirts sold helps Vanderbilt University's Seizure Research Project, and they look really cool. I've ordered one, and the owner of the company is a wonderful angel mom named Kelly. She is completely reputable, and a courageous and decent lady, who's inspired so many. Become a fan of AOE on Facebook also, because she has other excellent quality merchandise, that can help your family out. Yet I do hope you will consider wearing a shirt dedicated to Tommy, and all other angels who've lost their lives far too early to seizures. There are angels right now, fighting for their lives, and even those who don't go home to God early, are being affected by seizures. To see a happy angel, who's got a smile and laughter that can light up a room, be knocked around by seizures, is a stark contrast that you simply cannot miss. That is why it is imperative that we find a cure for these seizures, that cause them to suffer, along with those who love them so much.
Saturday, March 26, 2011
Death of a Loved One-Reading For the Bereaved
Death. It is such an uncomfortable subject. This subject is usually talked about in hushed tones, or with a bit of shuffling of feet, or perhaps crossed arms as part of your body posture. It is inevitable. All of us have got to go, and there's no guarantees that we will live a particular number of years. Sure, we can exercise, eat healthy foods, and provide sustenance for our bodies, along with that for our minds and souls. Yet death lurks around the corner, a constant reminder of our earthly bodies, having limits of that ticking clock, that with each minute brings us closer.
What do you do if you lose a loved one? You grieve, of course, and remember those times you spent with them. Both good and bad, these memories can pierce your heart, make those tears flow as if powered by a river, or even provide smiles and laughter too. Life is such a mysterious ride, and as part of it, all of us are going to see loved ones pass away. It is so difficult, and while I'm not going to get into the arguments of which is the hardest, since there's no way you can put an empirical value on it, I lost my child on November 4th, 2009. The passing of a child, is even more taboo that the key subject of death itself, since we think "this could never happen to me." We are supposed to outlive our children, but that's not how the plan always works. Thankfully, for the most part it does, but there are no promises that this will be the case. So many have been through this tragedy, and here are some books that might be "soul reading", and provide some comfort.
Of course, I could say Bible or other religious text. These are obvious, and there are passages that can provide help or reassurance during the darkest of hours. The Shack is among the best with dealing with the "great sadness," that you will no doubt be going through. I am forever indebted to this book, for discussing such pain in an open manner, and that we must accept it. We must face our fears and the gut wrenching, soul tearing type of pain that the loss of a loved one can inflict upon the essence of your being. Tony Dungy's "Quiet Strength," is also a fine selection, as he has had to bury one of his son's. While this is not the main theme of the book, his character and faith are important, and provide a map of sorts to pulling yourself up. One day I hope to meet this great man, and thank him for what he was able to convey in this book, and about the importance of God in our lives.
Flight to Heaven by Captain Dale Black is a fantastic read. Here is a man who was in a plane crash as a young man, who died, and saw "the other side." That's right, he saw glimpses of Heaven, as the only survivor in that terrible event. Ever since then, after a long rehabilitation and numerous surgeries, he got his pilot's license, and has been flying across the world to help those who are impoverished. This is a really touching book, and while you will have tears, they are of the "good, healing kind." Yet perhaps the most amazing is works by a sportswriter. Mitch Albom has a gift, that I simply cannot describe, but I am more than happy to recommend to anyone, who is in pain or just wonders about what they are doing in life.
A sportswriter from Detroit changed my life. In Tuesdays with Morrie, his dying professor taught me it is okay to cry and be a man. He also had so many valuable lessons in here, without being heavy handed, and plenty of laughs. I would have loved to have met Morrie, because he is a man, that you will want to emulate. A Little Faith talks about a eulogy for a religious leader, along with the story of redemption. This will pull at your strings, and open your eyes a bit, just about how much we have in common, whether in good times or bad. Finally, The Five People You Meet in Heaven, is a reminder of how we can be there for others in life. You probably have five people or more in your life, who have shaped you, and helped you become who "you" are.
I like what Tony Dungy says about the loss of a child. He states, "I'm still grieving." That makes a lot of sense, as I will never ever get over the passing of my Tommy, but I am getting through it. This is with God, love of a strong family and friends, with a bit of resillience taught to me by a gentleman named "Brother Bill", who answered a prayer when most needed. Life is mostly good, and even when faced with tragedies, you can bounce back from anything, although it might not seem like that. It is perfectly acceptable to cry, to mourn those who you have lost in your life, but know that they are with God. I have felt his presence so many times, and while there are good days and bad, the better ones far outweigh the less desirable.
These books aren't a cure, and will not make the pain magically disappear. Anyone who says this, or therapy, or any other type of help, has obviously lost their mind. Yet, you can persevere. You can rise to what has been thrown your way, and go through the trial and tribulation with your head held high. Death is inevitable, and there is just so much, that is not in our control. The key is acceptance of your loss, and trying to deal with it step by step. There is going to be anger, profound sadness, and a fog that just doesn't seem to lift off of you. Yet, day by day, step by step, you shall get through it.
Wednesday, March 23, 2011
Stop Seizures Now Blog is International-Across the Globe We Stand United
Argentina, Austrailia, Canada, France, Germany, Gibraltar,Greece, Ireland, Israel, Japan,Jordan, Malaysia, Morocco, New Zealand, Peru, Russia, Singapore, Spain, Sweden, United Arab Emirates, United Kingdom, and the United States.
Thank you to all the people from these countries, who have read this blog. If for some reason I somehow missed your country, I apologize, but these are the ones listed by "Google's Tracker." Seizures do not care what the color of your skin is. Your religion need not matter either. Nor if you are old, grey, bald, young, blonde, or regardless of your beliefs. That's right, seizures do not discriminate, and we should stand united, in unison against this terrible menace. It is not going to be easy, but nothing is that accomplishes something, and to defeat seizures we are going to have bumps in the road along our collective journey. In many ways, if there was a bus that could fit all of us, we would have to hold on to each other during this ride, and if we do so we can win the war against seizures.
War is such a strong word. It usually accompanies bombs, soldiers, and a lot of blood. This is a different type of battle, that is based upon love, grit, and determination. I cannot bring my son Tommy back, who passed away from a seizure at the age of five. Others who have been in the "same boat" cannot either. You cannot walk backwards, but we can move forward. There is pain for us that have lost a child or loved one to a seizure. The tears are okay, and if you need to, by all means let them loose. Use that pain to do something productive, which is to not allow this to happen to someone else, and to also help those who live with epilepsy. They are suffering from these seizures, and they need are help now, not tomorrow.
There has been progress on the seizure front. Universities and research groups across the world are closer than ever. The one that I'm putting my bets on is Vanderbilt University's Kennedy Center (Angelman Seizure Project), due to the fact that they have had so many breakthroughs. Their staff is beyond dedicated. If you are familiar with the Geico insurance commercials with the big coffee cup mugs, that is what they are like down there in Tennessee. They are working around the clock, and are our best hope in finding that elusive cure, so that no parent will have to be devastated by the loss of a child, or a person having to learn new skills over and over again due to seizures interfering with their quality of life.
November 4th 2009 is the night my son Tommy was found unresponsive in his bed. I shall never forget this night, the trauma, the sheer pain that went through every essence of my soul. The heartbreak that I have heard from others who've lost a child due to a seizure, its just the worst, and I cannot believe that this effort against seizures is making such fast progress. I am so inspired by people that I have met, and been able to know through this. It isn't the road I expected to take, but the folks at various religious organizations, groups dedicated to finding a cure, or just individuals who've had to learn about resillience not by choice, have left me in awe. Thank you again to all who follow this blog, and a special appreciation to Darren(you got the ball rolling), and Brother Bill.(you showed me how to find resillience). God bless you all, and soon there will be new updates posted on seizure research.
Monday, March 21, 2011
Faith in Action: Saint Luke and Saint Matthews Lutheran Churches in Maryland: Thank You
Yesterday I had the honor of meeting Pastor Marina, who ministers to two Lutheran congregations in Southern Maryland. These are Saint Luke's at 1519 Ballenger Creek Pike Point of Rocks, MD 21777, and Saint Matthew that is at 4004 Ballenger Creek Pike Frederick, MD 21703. This was set up by "Angel on Earth" Michelle, and in no doubt was made possible by the glory of God. As many of you know, my five year old son Tommy passed away of a seizure related to his Angelman Syndrome Condition on November 4th 2009. The past year and almost a half, has been a painful journey, but it has been a learning experience of sorts. I am no longer angry at God, and feel that I have no choice, even as imperfect as I am, to do what I can to stop these seizures from taking another child or person far too early. Do I wish I had a medical degree so I could go through manuals, and understand the physiological parts of a seizure, and maybe provide me a few more pieces to the puzzle? Of course, but even as a simple man, who wears a uniform and a nametag, I have hope.
This is because of people like Pastor Marina, Angel Michelle, her family, and the folks at these two wonderful congregations. It is due to folks like "Brother Bill" who I met in that parking lot that fateful day, when I prayed and screamed at God with venom, that was only second to the night that Tommy passed away. There are two choices when faced with the loss of a child. You either give up, or fight on in the trenches. The second option, while not easy, is the best one possible. This is because it is "faith in action," which was the subject of two speeches that Pastor Marina was kind enough to allow me to deliver. I was greatly inspired by her congregants, their kindness, and they made me feel at home. If you are in the area, I cannot fully recommend either congregation enough, because what makes up a church is not the building, but rather the pastor and the people that attend. Here these churches shine, as Pastor Marina is a gem, and the folks that worship at these buildings are as well.
I would personally like to thank Pastor Marina, Angel Michelle and family, but most importantly God for making this happen. God is responsible for our interconnectedness as a community, no matter what state, or where we come from. Their doors were wide open, and for the congregants to be so welcoming, so enthusiastic, and also telling me stories of their lives when they've been challenged, left me feeling much better than prior to my arrival. It is difficult to speak in public, even when you are passionate, about a subject that causes you pain. I cried yesterday several times, but yet by the end of the day, I had a smile on my face knowing that "faith in action" is a reality. It is something that each of us is capable, and it does not require us to have an extraordinarily high IQ, work in a position of prominence, or have a lot of money. All it requires is having a heart, caring about others, and ultimately stepping in when necessary to help another person. Pastor Marina, Saint Luke's, and Saint Matthews Lutheran Churches certainly did this yesterday. May God bless all of them for their kindness, and provide them peace and blessings.
Friday, March 18, 2011
Mark Your Calendars: May 21st 2011 is the Angelman Syndrome Foundation Walk
I will never forget going to my first Angelman walk, that is sponsored by the Angelman Syndrome Foundation. It was both painful and liberating. Those two words do not generally get together, but that walk in 2005 was a special time. My son Tommy had been born in July 2004, and was diagnosed with having Angelman Syndrome in November of that year. It was not an easy time, with a lot more questions than answers. Yet with the support of a pediatrician, and a special angel named Hal, I was able to find more about the condition. All of this was possible, due to the fine folks at the ASF, who guided me to the proper resources when needed, and helped me to realize the most important thing. I am not alone, there are others out there facing similar challenges, and that Tommy had a group fighting on his behalf.
Arriving at the Chantilly, Virginia location that was the place of my first Angelman Walk, I felt tentative. Tommy was so little, only about eight or nine months, and I just had no idea of what to expect. Looking around I saw a lot of people, and as I approached the crowd, a surge of pain just hit me right in the chest. There were older angels, who never had the chance to have the early intervention that Tommy would receive, and I felt heartbroken seeing these folks who didn't have the luxury of a diagnosis so soon or necessary services. Also, I saw angels that were doing things that some doctors told us were impossible. So much for "doctor's orders." There were also parents, grandparents, uncles, aunts, siblings of Angels, and I realized right there again, that I was not alone by this powerful visual statement.
There were a lot of tears that year. I actually broke down hard after about a half mile on the walk, and am forever thankful to the love of my parents, brother, aunt, and other family members who were there to hold me up. The first walk was a bit hard, but as the day progressed, I felt much better, and finally got a hug from Hal's daughter, which meant the world to me. It was almost as if she was saying "Everything is going to be alright, and you shall survive the challenges that have been thrown your way." That hug meant so much, and I cried tears of pure joy. Until my last day on this Earth I shall never forget her hug, or this walk, which was an eye opening experience on so many levels.
I've been to each Angelman Walk since. You can find where these events are held at http://angelman.org/. The Angelman Syndrome Foundation is a fantastic charity, which cares deeply about the angels and their families whom they represent, and they are also a resource into seizure research, which is dear to my heart. That is because Tommy passed away in November of 2009 due to this, and the 2010 walk was not easy by any stretch of the imagination. It was so strange not having my son with me, to cross the finish line, yet I felt serenely comforted by the love and support on this trek around Columbia, Maryland. In fact, I did not break down at all, and while there was some pain, I am indebted to the folks for having a moment of silence for Tommy, and for all of the wonderful people I met along the way. This walk was different, but at the same time a glorious occasion, and I will be once again at the Angelman Walk in Columbia, MD on May 21st with my family, and Tommy's younger brother. He will learn firsthand here about Angelman Syndrome, and how the work of the foundation to generate awareness, forge great relationships, and to find a cure for these seizures is of vital importance.
One click. Go to http://angelman.org/. Consider attending the walk, because it is an experience that you shall never forget. There is so much love at these events, and you will realize that we are all part of a family, regardless of what background we come from. The unity of purpose is on display in a way that you will not see elsewhere, and its so wonderful to see the family you never knew you had, until you go to one of these. There is some shade for you to have a picnic, and to meet others that are in the same boat. This is so important, because being on a Angelman boat ride alone can be overwhelming, but having extra folks to help you steer and navigate the waters, can be very beneficial. If you cannot attend, please consider making a donation to this charity. The ASF has the highest rating on Charity Navigator, and do not waste money on administrative and other costs that take away from, helping those whom they serve. For that reason alone, I hope you will consider supporting them, with either your feet, your wallet, or both. Tommy will be looking down this year, and I plan on bringing a few red balloons in his memory, since that was his favorite color. The journey continues, and with the ASF along with the folks at Vanderbilt University, I know we can find a cure for seizures and get people to join us on this very important mission.
Tuesday, March 15, 2011
Resilience-Its How Our Fight Against Seizures Will Be Won
The battle against seizures is going to continue to be a difficult journey, but we cannot give up ever. Nothing good ever comes easily, and without the blood, sweat, and tears that are needed to have been experienced, for a major success. A fine example of this resilience that is required, to help Vanderbilt University's researchers and us who are applying the footwork, is none other than Abraham Lincoln. While some southerners may take umbrage, you relax, its been 150 years ago, and this is about seizures my dear friends below the Mason Dixon Line. Look at Abraham Lincoln's life, and what he was able to accomplish, before meeting some killer thespians such as John Wilkes Booth.
Abraham Lincoln was born into humble circumstances, and lost the love of his life at a young age. One of his children passed away, he had a nervous breakdown, and failed in business not once but twice. Mr. Lincoln, although he did not have the best fashion sense with that top hat of his, continued to run into misery politically also. He lost races in 1843, 1849, 1855, and 1856. Four years later he was President of the United States, during a tumultous time in American history. He did not give up in the face of challenges, and our efforts to defeat seizures shall be meant with similar gusto. There are going to be bumps in the road, and while I do not wish to hear "Sic Semper Tyrannis" yelled in my direction, I do hope that we can as a group smile in celebration when we've found that cure for these terrible seizures.
Some have said it is impossible to cure seizures. Perhaps they are right, but that is such a defeatist type of lifestyle, that I have nothing good to say about it. If we can have men land on the Moon, the invention of so many vaccines and medications that extend and or save lives, then why in the heck can we not have a cure for these irregular electrical impulses. People called Thomas Edison crazy with his "lightbulb idea," which might have been prior to the days of illumination. Yet with all of the discoveries having been made, and the resilience that we are all capable of, it can be done. We will defeat seizures, through our hard work and willingness to fight for what we believe in. It won't require us to carry around the boombox that Mr. Lincoln has in this picture, but we need to be loud and proud. :)
Abraham Lincoln was born into humble circumstances, and lost the love of his life at a young age. One of his children passed away, he had a nervous breakdown, and failed in business not once but twice. Mr. Lincoln, although he did not have the best fashion sense with that top hat of his, continued to run into misery politically also. He lost races in 1843, 1849, 1855, and 1856. Four years later he was President of the United States, during a tumultous time in American history. He did not give up in the face of challenges, and our efforts to defeat seizures shall be meant with similar gusto. There are going to be bumps in the road, and while I do not wish to hear "Sic Semper Tyrannis" yelled in my direction, I do hope that we can as a group smile in celebration when we've found that cure for these terrible seizures.
Some have said it is impossible to cure seizures. Perhaps they are right, but that is such a defeatist type of lifestyle, that I have nothing good to say about it. If we can have men land on the Moon, the invention of so many vaccines and medications that extend and or save lives, then why in the heck can we not have a cure for these irregular electrical impulses. People called Thomas Edison crazy with his "lightbulb idea," which might have been prior to the days of illumination. Yet with all of the discoveries having been made, and the resilience that we are all capable of, it can be done. We will defeat seizures, through our hard work and willingness to fight for what we believe in. It won't require us to carry around the boombox that Mr. Lincoln has in this picture, but we need to be loud and proud. :)
Saturday, March 12, 2011
Semper Fi and Seizures
The United States Marine Corps has always had a special spot in my heart, due to their belief in honor, courage, and commitment. They are always the first in, first out, and they do not leave anyone behind. If there's a group of folks that I want in my foxhole, if I was called to serve, it would be none other than the Marines. Semper Fi, "always faithful." On a recent tour of civil war battlefields, I slipped up and accidentally called the near ninety year old gentleman "a former Marine." There is no such thing, and while I worried about getting knocked around by his swagger stick, thankfully he showed benevolence and reminded me in a kind way that he was still on duty.
Imagine for a moment, your child dying of a seizure. What would you feel? Wouldn't it tear your heart apart, the very essence of your soul, making you question everything you've been raised to believe your entire life. You are supposed to outlive your children, not the other way around. That is the "natural order" of things, since isn't life supposed to be predictable, like the sun rising from the east and lowering in the west, or turkey and pumpkin pie being served at Thanksgiving? Not exactly. A brave Marine lost his child a little while back, a man who has been engaged in the heat of battle, where all of your survival "fight or flight" senses are tested to a maximum velocity. First in, First out. Marines face challenges that no other branch of the military will, due to the fluid changes of battle upon landing in a zone that has not been mapped yet, and are not certain of potential pitfalls that lay in their direction.
A seizure took the life of this brave Marine's child, who served our country with honor, courage, and committment. He told me that losing his son was "worst than combat." I have never served in combat, and my street fights pale in comparison, and these words hit hard when thought about and deciphered. Imagining what this man has seen in the field, having bravely served his country, and then to have this happen, seems to much of a burden for one person to carry. Semper Fi. Yet he is faithful. Always faithful. He has every right to be upset, angry, miserable, and confused about the whole situation that's been thrown his way. As if he had not already experienced enough pain, add this on top of the "pie", and its not whipped cream and cherries, but rather a knife to the soul that will never be healed. Semper Fi. Yet he is faithful.
In life, there are no guarantees. No matter what your religious background, look at any text of note from any faith, and you will see people just like us who have had to face tragedies. There are natural disasters in the Bible, just like there are people suffering what looks like the apocalypse in Japan. People will always suffer, and while it is horrible, what matters is that we keep our faith in the eyes of such challenges. These trials and tribulations, the "crosses we must bear," are not easy. That's why the Marines have it right. Semper Fi-always faithful. A cure for seizures must be found, and with the honor, courage, and commitment that the Marines have always shown, we shall win this battle with love and dedication with a decisive victory.
Monday, March 7, 2011
I Don't Give Up if You Don't Give Up-Signs Point to A Cure for Seizures
A high school friend of mine, who I greatly admire for her tenacity and courage, recently helped me to re-discover Train's "Calling All Angels." When this song came out, much like the rest of this bands stuff, I would change the channel. It would take a nanosecond for this to be "gone", yet now I love it when this song from six or seven years ago plays on the radio. The other day, I was listening to the radio in the car, and hoping this would come on. It was a wonderful surprise when it did, and I sang to my hearts content, much to the chagrin of commuters, pedestrians, and even wildlife in a mile radius. While I am happy that the window folks have gotten a lot more business in this area, a lot of what this song is true about faith.
November 4th, 2009 is a day that will live in my heart forever. I will never, ever get over the passing of my son Tommy at age five, from a seizure. Yet with the loving hands of God, family members, friends, neighbors, and people I don't even know, I shall get through this. These lyrics of this song describe the past year and a half's painful times: "I need a sign, to let me know you're here. All of the lines are being crossed over the atmosphere. I need to know that things are going to look up, cause I feel us drowning in a sea spilled from a cup." How true that was. When Tommy passed away, I felt despondent, and exactly like the last part of that lyric.
Yet I have hope. That quality cannot be questioned anymore, as its power is truly spectacular. There have been no booming voices, burning bushes on my front door, or God showing up in my living room. Yet I feel His presence and guidance. The pain is not going to go away, but with heartbreak comes resolve. The lyrics in this song again describe how fighting seizures is now the main mission in life, and these are "I Won't Give Up, if you don't give up." Well, there's no giving up period. There will be pain, bumps along the journey, and trials and tribulations that will cause stress and a lot of tears. Yet there will also be laughter, smiles, and positive gains made as well. With the grace of God, with the footsteps of many, and the researchers of Vanderbilt and other institutions, may a cure for seizures be found.
God works in mysterious ways, and we have "free will." I know it would be okay if I just sat around in misery, but what would that accomplish. Why not do something positive out of something so painful? We do not have time to waste in this battle, as there are children and adults who are affected by seizures everyday. Productive adults are knocked down for days due to these. People with intellectual disabilities have all of their gains diminished, with those who love them, feeling hopeless after these events. "I need a sign to let me know you're here, cause my tv set just keeps it all from being clear." These last lyrics could describe faith, and the battle we have with it sometimes. In our fast paced world that keeps us on the go, go, and go, it helps to simply reflect.
My view of God is endless love, that is beyond our human comprehension. I am not angry at God for the death of my son, but I am upset that we do not have a cure for the seizures that ultimately caused him to lose his life at the young age of five. As I look up at the blue skies today, through the green pine trees that are in front of me, it is sometimes hard to picture a loving God, and how we can become more faithful. It does not have to be at a church, as it can be in any setting. Faith in action is imperative for positive changes, and for that reason alone, we should get our feet out and do anything to raise awareness against seizures that have affected so many. "I need a sign, to let me know you're here. I won't give up if you don't give up."
November 4th, 2009 is a day that will live in my heart forever. I will never, ever get over the passing of my son Tommy at age five, from a seizure. Yet with the loving hands of God, family members, friends, neighbors, and people I don't even know, I shall get through this. These lyrics of this song describe the past year and a half's painful times: "I need a sign, to let me know you're here. All of the lines are being crossed over the atmosphere. I need to know that things are going to look up, cause I feel us drowning in a sea spilled from a cup." How true that was. When Tommy passed away, I felt despondent, and exactly like the last part of that lyric.
Yet I have hope. That quality cannot be questioned anymore, as its power is truly spectacular. There have been no booming voices, burning bushes on my front door, or God showing up in my living room. Yet I feel His presence and guidance. The pain is not going to go away, but with heartbreak comes resolve. The lyrics in this song again describe how fighting seizures is now the main mission in life, and these are "I Won't Give Up, if you don't give up." Well, there's no giving up period. There will be pain, bumps along the journey, and trials and tribulations that will cause stress and a lot of tears. Yet there will also be laughter, smiles, and positive gains made as well. With the grace of God, with the footsteps of many, and the researchers of Vanderbilt and other institutions, may a cure for seizures be found.
God works in mysterious ways, and we have "free will." I know it would be okay if I just sat around in misery, but what would that accomplish. Why not do something positive out of something so painful? We do not have time to waste in this battle, as there are children and adults who are affected by seizures everyday. Productive adults are knocked down for days due to these. People with intellectual disabilities have all of their gains diminished, with those who love them, feeling hopeless after these events. "I need a sign to let me know you're here, cause my tv set just keeps it all from being clear." These last lyrics could describe faith, and the battle we have with it sometimes. In our fast paced world that keeps us on the go, go, and go, it helps to simply reflect.
My view of God is endless love, that is beyond our human comprehension. I am not angry at God for the death of my son, but I am upset that we do not have a cure for the seizures that ultimately caused him to lose his life at the young age of five. As I look up at the blue skies today, through the green pine trees that are in front of me, it is sometimes hard to picture a loving God, and how we can become more faithful. It does not have to be at a church, as it can be in any setting. Faith in action is imperative for positive changes, and for that reason alone, we should get our feet out and do anything to raise awareness against seizures that have affected so many. "I need a sign, to let me know you're here. I won't give up if you don't give up."
Tuesday, March 1, 2011
What Does Edmund Burke Have To Do With Seizures? Everything!
Edmund Burke's famous quote "All that is necessary for evil to triumph is for good men to do nothing," could be very much a statement of conviction, with regards to the battle against seizures. We could rest on our laurels, and just "accept that they are inevitable." Children will suffer, children will die, there's nothing that can be done about it. It is what it is. Is going to happen. That is such a defeatist type of lifestyle, and I've actually heard people say those words. Personally, I think they are pathetic, lack the imagination to do something good, and that is to never give up. When the British were being bombed to near oblivion, Winston Churchill said something that is also applicable to the fight against seizures. That was "never, never, never, never, never, never give up." So many had predicted Great Britain's fall, and guess what, it didn't happen.
Seizures are a battle as well, and we must fight them with all of our determination, that we can muster. There are going to be good days and bad, but each day moving forward brings a cure that much closer. I have no doubt that they are going to be cured, and have prayed about it often. While no burning bush or booming voice has called me out and said "You got it," I have no doubt that we will see this occur in our lifetimes. There's no time to waste though, as children across the world are fighting these seizures at their homes, schools, and hospitals. Some of them are in coffins, like my son, where they should not be. It is too late for him and others, but much like Charles Dicken's "A Christmas Carol" the future holds the keys to what will become of these children.
The human struggle is exactly that. Its a rough road, that is accompanied by highs and lows. Thankfully the up's outweigh the downs, but its time for all of us to ask, "Am I doing everything I can to help find a cure for seizures?" If you are part of a religious organization or trade group, a corporation, don't you think you could at the very least send an email, make a phone call, or talk to a person of influence? What's the worst that can happen? They say no. You won't have your birthday taken away because of it. This campaign is in full swing for a reason, and that is to stop children from losing their lives to seizures, and for parents to be left with such pain in their souls that they have to live with this open wound for the rest of their time on Earth. Let's strike seizures down forever, because while we could sit around and do nothing, that would allow seizures to ultimately triumph.
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