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 14, 2013
Hope is Where the Heart Is
All of us at one point in our lives, have lost all faith in everything. Each and every one of us, that's on this planet, has baggage. I think I'm up to a complete Samsonite set by now, but what matters, is how you deal with it. Do you let it in a figurative sense, roll around on the turnstiles at the airport, or do you pick it up, and move forward with the lessons learned? All of us have made mistakes, all of us have sinned, all of us are imperfect beings, even with the kindest of intentions. It does not matter what country you live in, or any of the so called labels that all of us get caught in, because at the very bottom of our core, we all have souls that are often weighed down. Recently I read a book called "Changed by Faith," by Dr. Luis Palau, and I agree with him on his assertion that 80% of our problems, are due to unresolved guilt.
How do we deal with such an issue? By facing it head on. If I could count how many times I've been angry or sad, and there was a penny attached to each instance, I'd be a millionaire by now. For the the fleeting moments of happiness, joy, that are to be grasped on with full intensity, I'd have several hundred thousand dollars in my savings account. Life is not an easy ride. Its full of bumps, bruises, and pain so heavy upon the heart, that it does feel as if the world is walking on you. Actually, Hemingway's description of "the word breaking the most toughest of people," is accurate, because there will always be pain, tragedies, and events that make you not only question your sanity, but also "what is the meaning of life." The last one has caused me the most difficulty, and I think to be completely forthcoming, the biggest issue I face regularly is being too hard on myself. Is that a cop out? Nope. A lot of people I've met, in the throes of anguish, that is their dilemma. You aren't alone. Life is an adventure, and that is what we are put on this planet for, this blue marble that is covered with water and inhabited by idiots. Those are of course, someone else :).
You can think you've really "screwed up everything," but in all reality, someone else has "been there, done that." It took years for me to finally admit, and there have been tears associated with this, to realize that each of us has value, and also we are not always going to make the right decision. The learning curve can be harsh sometimes, but ultimately looking in the rear view mirror, I now am able to realize what went wrong, and make corrections on the trajectory of life. Am I now going to never make a mistake again? Never. Just kidding, of course I'm going to. All of us will, but that is where we learn what we are made of, what deep down that blood and guts that is coursing through our veins, can do not only for us but for the lives of others around us in the same heavy shoes.
So often we worry about being inadequate. It paralyzes us and we become complacent, not reaching out for that branch that brings stability, because of the "what ifs." There are no guarantees in life, other than we are born, we live, we die. Its pretty simple, and that is the beauty in a way, because while we don't know our day, those are etched in stone as mortal beings. A smile or laugh, by one of our fellow human beings, can make all of the difference in the world, and I bet you have made more of an impact on others, than you'll ever know. Some of the best things in life, result from quiet faith or what seems to be a coincidence. There's no such thing as that, because these are events, that are in fate meant to happen. Looking at the stars at night, I find it remarkable, that these lights from the cosmos are from years ago. Just reaching Earth now their brightness in the sky, is a reminder that each and every one of us, are a valued human being with unlimited possibilities for living a life of purpose and satisfaction, no matter what curve balls are thrown our way.
Thursday, March 7, 2013
Spending a Weekend with Two Rett Angels: Spiritually Touched
This past weekend I did not make it to church, but you do not have to go to a place of worship, to feel spiritually moved. The Good Lord is with us always, and over the last couple of days, I've been thinking about a trip to Baltimore, that I will no matter how valiantly, fail to put into its context with mere words. I had met a little girl with Rett Syndrome before, which is a neuro developmental disorder that affects mostly girls. Estimates of occurrence are somewhere in the 1 in 10,000-15,000 range, but be assured that girls are born with this each and every day. According to www.girlpower2cure.org, it is as prevalent as ALS, Cystic Fibrosis, and Huntington's Disease. There are several foundations, and scientists from international locales working on a cure.
My sister from another mother Lisa, has a daughter named Ashley. I had seen pictures of videos of her before, but never had the chance to meet this twenty four year old princess. The same goes for Ronna, a kind lady from fairly close by, who's daughter is named Amanda. She is twenty five, and both of them look like they are twelve, truly both are gorgeous. They are cherubic angels, and I am so grateful for the chance, to have spent time with these wonderful families, that are resilient in all aspects. As soon as I met these two young ladies, I was deeply moved. There were lots of tears and smiles, because looking into their eyes, you can see the power of love, innocence untouched by the sometimes conflicted environments we all live in, along with proof of a spiritual connection that all of us have.
Both girls had their dolls with them, and I cannot even begin to fathom, what their mothers went through as they learned their beautiful girls had Rett Sydnrome. These girls and their families deserve a cure. Until then, they have earned our respect. Both were non-ambulatory, and have had to fight seizures and a whole host of health issues. They've both fought through numerous surgeries, including invasive ones, that left me in tears just thinking about what they involved. Yet they don't give up, and likewise their families don't either. Both Lisa and Ronna are fighters in every sense of the word, and my hat also goes off, to the siblings of these two beautiful young ladies. Grant and Rebekah, you have not only made your parents proud, but you also have made the world a better place. You have fought tooth and nail at every stage, along with continuing to educate the next generation, which is how a cure will be found. Sue, you are an angel too.
I cried upon leaving both of these girls. There is no shame, but rather a heavy heart, because just being close to them, meant so much. There were just so many lessons this past weekend, and while sadness was part of it, there was also joy, laughter, and much happiness to boot. If I had a glass of wine in my hand right now, I would toast these families, and both Amanda and Ashley. They are champions, they don't quit, and show us that life is to be valued. Looking into both of their eyes, or getting smacked on the head, was one of the best times ever. Thank you to both of these young ladies, and to their families for sharing them with me for a few moments, that have provided a lot of peace and more of an education that I had prior to this weekend.
Wednesday, March 6, 2013
We Walk in Circles: Another Angel Gains His Wings
We all are born, live, and die. That's the order of business, and while there are jokes about in between events, that's the bottom of line. Each and everyday is a blessing, to be cherished with appreciation, but far too often they are viewed as a menace. Yet they are far from that, because what is a menace are seizures. This past weekend, I was saddened to hear that yet another young man with Angelman Syndrome, passed on from seizures. There were a variety of emotions, ranging from anger to sadness, and all in the AS family are deeply affected by such tragedies. Kids with Angelman Syndrome are so cherubic, have so much heart, and truly are better than the rest of us. Their enthusiasm, their smiles, their laughs, and outlook on life are full of love that simply cannot be verbalized.
Right now, a family in a beautiful part of the United States, is facing gloomy clouds. All of our hearts and prayers should be with them, as they are going through the worst possible pain, that any parent should never have to contend with. It is the hardest possible road, full of rocks, that jut out when unexpected, even after the shock of losing a child. They are going to need our prayers, our support, our compassion. All of us have been looking at the pictures of this beautiful family, and have cried tears along side of them, no matter where on this planet we are at. This young man's smiles, and gusto for life, are dearly weighing heavily on this family, who so obviously loved him. He had a blessed life, and may the balloons around the world, be released this Saturday in memory of him.
All of us wish that we could "send the seizures away forever," and it is too late for this young man, along with so many other angels. There have been far too many taken by these, or had their lives affected by them. As a simple man, I do not know the reason why, but I do hope with everyone else that a cure can be found. I sit here this morning typing away, thinking of the beautiful spots of Hawaii that I've never had the chance to venture. The crashing of the waves on the beach, that gentle reminder that we are surrounded, by something so much bigger than each of us. That naturally musical from the soul sound which has lullaby qualities, may it provide the family with some comfort, as well as them knowing they are not alone. They are far from that, because there are so many that have been through what they are going through right now, and each and every one of us that has not still has tears just as valuable, and just as noble during this time of pain.
Tuesday, February 26, 2013
Today Another Angel Gains His Wings
Psalm 116:15 Precious in the sight of the LORD is the death of his saints.
It goes against the grain, to have to experience, the loss of your child. There is no worse agony, no kick to your soul, that will ever test you as this one. This pain rips apart everything that you held to be sacred, and sends you into a descent that is tantamount to 10,000 deaths all at one time. There's nothing more brutal, more sharp, more jabbing of stabbing knives, and you will never be the same because of it. Today a young man with Angelman Syndrome lost his life, and while it is true that people die every day, every moment for that matter, it is hard to hear about a parent having to bury their child. That's because I've been there, and so many others have as well.
Child and casket don't go together. Young man and obituary don't either. Yet these are the reality, and all of our hearts, should be praying for the family of the young man who has no doubt entered the gates of Heaven, without the encyclopedia set of sins we have incurred on the journey. He got a free pass, right in there, because a child, or a person with special needs, is the direct opposite of the evil, the hatred, and the bad that each and every one of us carries in our hearts. We are all imperfect compared to a child, to a person with special needs, because of the issues we harbor with us each and every single day. These folks see better than what we do, without the prejudices and hardness of life, that turns us into what we swore that we would never become.
All of us must suffer. There are different battles that we must all face, and it is my sincerest wish, that no more children have to die. Yet I am a mere mortal, and it is beyond my power, although I do believe that if we all pray enough, the Good Lord will hear our cries and show grace. Often there is a disconnect from the spiritual realm, but if you walk with the man upstairs long enough, you know there is not a shadow of a doubt of His existence. Why do we have to endure such pain, why are so many families having to bury their children, and pick out what clothing they are going to wear as they are put into the earth? I don't know. It is frustrating, and as all of us like answers, there are reasons for everything, and there is not a thing as a coincidence. Prayers for the family in North Carolina right now, and for all families who've taken this journey, of tears, anger, and confusion that no parent should have to go through. Yet know you are not alone, not from the Heavens that cry along with you, nor the folks on Earth who stand beside you on duty, ready to carry on.
You will never get over this, but you shall get through.
Wednesday, February 20, 2013
CPR Training: Compounding the Tears
About two weeks ago, I had to do CPR training. For most of us, this is a educational course, and if you are not certified I fully recommend you doing so. You might just save a life, because while CPR does fail most of the time to resuscitate a person, its better to give it a shot and an AED greatly increases the chance of success. A lot has to do with time of course, and I used to view CPR courses, as something that was required rather than it being necessary. Also, it used to not pain me, even after doing CPR on a person that ultimately failed. Yet with my son it is a different story. At first I was hesitant to publish this, because I do not want to have people, view CPR courses as a negative activity. That is not my intention at all, but rather I just decided to put this down, how I felt because my last night with my son I had to perform CPR on him.
Training is effective in 90% of major crises in life. However, its taken time to realize this, as with members of your family, especially your children, that goes out the window. The other CPR effort I was involved with shook me up, but at the same time, I felt that I did all that could be done. All of us die, and it is not up for us to decide that day. Yet I slept well that night, and the weeks after, knowing that I did what "The Good Samaritan Act," is about by the letter. I have been dreading CPR training for the past couple of weeks, because it frankly, breaks my heart. My thoughts go to Tommy on the floor, calling 911, and doing this to try to bring him back. I failed of course, and the paramedics did all that they could, to bring our boy back to us. They do this everyday, and I honestly don't know how they do it. God bless these angels, who do everything they can to help families such as mine across the world.
The class had not started yet, and even though I was with people whom I'm very comfortable with, I had to leave the room before a couple of times. Gaining my composure was not easy, as tears came out of my eyes, as I thought of Tommy on the floor that terrible November night. After the class was over, I made a beeline to get out of there, and cried my eyes out under my sunglasses. The next day was not easy, as I went to his burial plot, and just had floods of tears pour out onto the nearby grass. While the mannequin was more robotic looking than human, I still am deeply bothered by this experience, and am glad that I don't have to do be re-certified for another two years.
There are undoubtedly other parents out there, who have had to do the same, for their boy or girl. My heart is with you, as no parent should have to do CPR on their children. Yet this is the case daily, and there are many, who walk among us trying not to think of this process or what it entails. The flashbacks are probably going to be with us, for the rest of our lives, even though they do lessen in strength over time. The most painful times are of course having to take these classes, and anniversary dates such as birthdays and the day our child left us. I am thankful to the teachers of the CPR course, and those who go out everyday, to help people who have a medical emergency. Also, my heart goes out to those in the same shoes, because while we may not have wanted to be put in this position, it is imperative that we remember 30:2 as well.
Training is effective in 90% of major crises in life. However, its taken time to realize this, as with members of your family, especially your children, that goes out the window. The other CPR effort I was involved with shook me up, but at the same time, I felt that I did all that could be done. All of us die, and it is not up for us to decide that day. Yet I slept well that night, and the weeks after, knowing that I did what "The Good Samaritan Act," is about by the letter. I have been dreading CPR training for the past couple of weeks, because it frankly, breaks my heart. My thoughts go to Tommy on the floor, calling 911, and doing this to try to bring him back. I failed of course, and the paramedics did all that they could, to bring our boy back to us. They do this everyday, and I honestly don't know how they do it. God bless these angels, who do everything they can to help families such as mine across the world.
The class had not started yet, and even though I was with people whom I'm very comfortable with, I had to leave the room before a couple of times. Gaining my composure was not easy, as tears came out of my eyes, as I thought of Tommy on the floor that terrible November night. After the class was over, I made a beeline to get out of there, and cried my eyes out under my sunglasses. The next day was not easy, as I went to his burial plot, and just had floods of tears pour out onto the nearby grass. While the mannequin was more robotic looking than human, I still am deeply bothered by this experience, and am glad that I don't have to do be re-certified for another two years.
There are undoubtedly other parents out there, who have had to do the same, for their boy or girl. My heart is with you, as no parent should have to do CPR on their children. Yet this is the case daily, and there are many, who walk among us trying not to think of this process or what it entails. The flashbacks are probably going to be with us, for the rest of our lives, even though they do lessen in strength over time. The most painful times are of course having to take these classes, and anniversary dates such as birthdays and the day our child left us. I am thankful to the teachers of the CPR course, and those who go out everyday, to help people who have a medical emergency. Also, my heart goes out to those in the same shoes, because while we may not have wanted to be put in this position, it is imperative that we remember 30:2 as well.
Monday, February 11, 2013
Places of Peace for Grief
As the father of a child lost, I am surrounded by many good people, of which I am very grateful for. Many of these are people who have been down the same path, and have had to contend with the pain, that never truly does go away. Its always there, just that little cloud that never seems to dissipate, yet at the same time there are places of peace. I was saddened in the past few weeks, to hear of the passing of a six year old girl with Angelman Syndrome. While all children's deaths leave me sad, knowing that another with this condition, hits closer to home for whatever reason. I'm not sure if this is right or wrong, normal or not, it is simply just the way it is.
It will be soon time to take a walk by the ocean. This is a place of refuge, one of very few that provide me with feelings of peace. Years ago, long before I joined a large group of people who've lost a child, I fell asleep fishing in a chair by the ocean. It was a bit of a surprise, to wake up about fifty yards from the beach, and my friends who witnessed it were howling with laughter. I did too, later of course, but there is something about that rhythmic cascading of waves. The sound is music to the soul, and in a few months, I look forward to walking by the ocean on the Yucatan Peninsula. This is of course, the home of the Mayans and other great civilizations, and it is my hope to find comfort in not only the waves crashing, but also of the permanence of their foundations that stand strong thousands of years later.
Whether you find the ocean to be your place of comfort, whether you've lost a child or not, its up to you. As all of us are unique beings, we find spots that are replenishing to our souls. Every single one of us faces challenges, or crosses that we must bear in this life, that sometimes cause us more anguish than one thinks is possible. Yet getting to these places, such as the ocean, or that trail in the woods where the only noise is the birds, is important to each and every human being. Looking out at the ocean, I'm often struck by its size, and its not only a reminder of how small and insignificant I am, but also of the greatness of our creator. We are all blessed, even if there is pain along the walk, because those footsteps in the sand are proof that we do carry on regardless.
Sunday, February 3, 2013
Running on Empty: Hanging up the Cleats
This past week, I have made the difficult decision, to quit running for good. It was agonizing, as I lost sleep over this, but based upon what my doctor's recommending, and how my body feels, its just going to have to be this way. God closes a door, and opens another one I am sure. There is still biking and hiking, so its not the end of the world, and I am very thankful to have had the opportunity to prove a lot last year. Running provided an outlet for a lot of pain, whether it was dealing with the loss of my boy, or just losing weight and understanding "mind, body, and spirit." I enjoyed running in high school, when I could run four minute miles, and this past year I ran a 5:57 mile, which isn't bad for a guy in his late thirties. Also, for the first time, I ran several half marathons. That 13.1 sticker was earned, and with a 7:30 per mile pace, I can rest knowing that even with two prior knee surgeries, that I gave everything I had out there.
The pain at night has been pretty bad, and I was fooling myself after my past knee surgery. Sure, I went out and ran a 7:00 mile, but the swelling became out of control. Now, when the weather changes, I feel it not only in my legs, but all the way up to my spine. Its not normal for someone to eat Advil as if they are "Tic Tacs", and it could lead to liver damage if it continues. Simply put, its not worth it with, what most of us consider "risk vs reward." I am glad that the weather is cold right now, as it has made this decision a bit easier, than if it was during the middle of running season. While I will miss competing, and hanging out with my fellow runners in a sport of so much passion, I encourage those who can, to get out there and move those legs. Running is good for you, and not only does it burn calories, it makes you feel so much better. The amount of energy you'll find is astounding.
I am grateful last year. Running really spiritually helped me to find some happiness, and also meet some amazing people. 2012 was a awesome year, and one that had a lot of valuable lessons. Honestly I never thought I could run half marathons at such a speed, and also lose so much weight, which will now be fought off via other methods. At least I don't have to hear, "Hey Skeletor", from sarcastic individuals who make me laugh with this anymore. Enjoy every moment, and remember that everything has to end eventually. Do I believe in coincidences? Nope. There's a reason I have a new mountain bike, purchased just a few months ago. Its time to "switch gears," and my first goal, is to bike the entire W+OD Trail in one day, and then complete the C+O Canal again. That of course is a five day affair, but perhaps that's in the cards, because while we can't control everything in life, we must deal with what's been handed to us.
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