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.

Thursday, April 9, 2020

To Parents Who've Lost a Child, That Painful Empty Chair









Melancholy. Anger. Confusion. Doubt. Guilt. Frustration. Tears that come like a overflowing river, and your world is completely turned upside down, into some alternative universe that can best be described as nightmare of the worst magnitude. The empty chair at the table, or perhaps in the living room, can bring back this flurry of emotions, with the speed of a freight train that knows no sympathy or breaks whatsoever. So many parents recently are wearing these shoes best not worn, and my heart goes out to each and every one of you. It is patently unfair, to outlive your own flesh and blood, the little boy or girl that you loved and still do. The hours last for days, the minutes for hours, the seconds seem to just disappear in a cacophony of vicious cycles. There's no rhyme or reason for this. In fact, there are no patterns of familiarity or life experiences, to prepare for such a tragedy, that people go through more often than any of us want to acknowledge. It happens every day, and in this time of coronavirus, people are even more edge than ever.

In 2009 our family lost Tommy, to an Angelman Syndrome related seizure. Its been many years one would think, and while quite often it does feel like another lifetime, sometimes it feels as if it was yesterday. To find your five year old unresponsive, to do CPR on your child, is a cruel twist of fate that I wouldn't wish upon an enemy if I had one. That night in 2009 is mostly me screaming out of rage, throwing away the sweatshirt of his blood that I had on me while performing CPR, and flipping out in ways that I couldn't have ever imagined. Our brains are our best friends and our worst enemies, but to those who've recently joined this sad club that no one should, I can promise you that life will never be the same. That sounds negative doesn't it? Yet its the reality, and while there will be tears and the stages of grief, you will never get over this pain. Ever. You will get through it. That may sound like a misnomer, but its actually the reality. Sure, I still have sad moments, especially on the birthdate of him, and the date that he died. Sometimes I see a kid that looks like him, and I can't help but notice the tears out of my eyes falling out.

Yet I am grateful. A loving family, great friends, and also grief therapy have been profoundly beneficial in at least becoming a new person. You shall with time too, and while years of pain may sound and are the worst sentence a parent can go through without a cell block, you can get through this tragedy of unspeakable volumes. Some of it does have to come from within. All of us bend. That's a fact. Yet breaking, that's not in our DNA. If you have recently lost a child, there will be a roller coaster ride of horrors, and I so wish I could give you the biggest of hugs and promise you everything will be "a ok." That would be a lie, as "ok" is going to change, with time and healing. Grieving well is very important, and as long as you find a way to do this, without harming yourself or others its totally fine. I have yelled at trees, bashed baseballs, and blown up ranges with anger and aggression that have torn paper targets hundreds of yards away apart with my furious temper. At least in the first few years. Also I lost my cool with a lot of people, and sadly have lost some friends in the process. Yet I am an extremely happy man, living a life of satisfaction, and more often than not have a smile on my face.

The reason is simple, and that's not because I'm empirically strong in any form at all. Just like you, I'm your relative by 3%. A well intentioned human being. There have been a lot of lessons, and right now you are going through a world of hurting. By all means, you've been dealt the worst deck of cards ever. While that is a cliché, there's one thing to remember even as you salvage yourself from the pieces of losing a child. There's no time period, or right answer, but when you can please think of this. It might sound warped, but after a lot of reflection, I feel with conviction that it is the right answer. While breathing in even with tears, and after weeks, months, and years of the grieving process, I want you to ask yourself one question. Would you want your child to non stop bash yourself day after day, over something that can't be changed? If the shoes were flipped, and you died, would you want your child to be in constant anguish for eternity? Its up to you to find that "no," but after years of pain I came to this conclusion. In the initial weeks, months, and years expect a lot of doubts and tears on a ride that will rip everything you know to blown up bits that don't make any sense. Its part of the grieving process to be angry, sad, confused, and every possible emotion possible. Yet I hope you remember not to lose hope, because each day of our lives good or bad, is a moment of where we exist. Its up to each and  everyone of us on this path, to decide whether to use this pain to help ourselves and others, or to abdicate our responsibilities to ourselves and let others run the show. This world is not fair, not but a mile, but I promise you can live a life of fulfillment. Take care of yourself, because quite often the initial reaction is to beat yourself up. While that's normal, eventually its important to find that purpose to propel you forward with a set of new eyes and compassion for all.

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