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.

Wednesday, April 15, 2020

2020: Quarantining and Loss of a Child, Perspective


The novel Coronavirus aka COVID 19 is frightening, and all of us are a bit on edge, no matter what part of the globe we are on. With so many cases, people being sick, and people dying it is not something to toy around with. True it is not as lethal as Ebola Zaire, or in its other forms. Its not the 1918 "Spanish Influenza," that killed roughly 50 million when the worlds population isn't nearly what it is today. Yet a lot of people are feeling alone, isolated, and a mixture of feelings as the number of cases rise. My ten year old have discussed it tonight, as I'm sure parents are everywhere.  He is slightly anxious, but his main irritation is the interruption of normal life. Years ago I lost my oldest his, his brother Tommy to an Angelman Syndrome related seizure. I wish with everything I have that this never happened, just like I do for no parent to ever lose one of their children, but this has provided me a bit more insight into what is really important. Yes there have been a lot of tears over the years. Anguish really, but there's also been some eye opening to the reality of situations both easy and difficult.

First off, we aren't being bombed. The German attacks on London were relentless. General Curtis LeMay's "fire bombings" of Germany and Japan weren't exactly lovely. Thousands of malnourished Africans, and people in other places die daily from diarrhea. We aren't sitting next to Chernobyl, or a horrific Indonesian Tsunami that wiped out 200,000 human beings in a startling reminder of our fragility. It could always be worse, and even though these times are a challenge, just remember a era of your life will now definitely be in a history book. Obviously, we all home for a vaccine, and hope this one will come down the pike fast. Numerous pharmaceutical research companies are going full throttle, and in the next couple of years, let's see that happen. I've brought up examples through history for my son tonight, and I wonder what so many of you are doing, to show leadership and also allaying any fears. It is admittedly bizarre to see people wearing masks everywhere, or empty highways that usually are crammed. My hope is that once we clear this apex, we don't lose our ability to communicate and include other human beings in all kinds of activities. There are more unknowns than knowns at this point, but hope we all can reassure our children of the need to do our best in these "alternative universe/twilight zone type of moments.

If you've lost a child, you're not alone, and if you haven't, please hug your kiddos even more. While nothing is guaranteed, and today is to be enjoyed to the fullest, be sure to check on your neighbors. A lot of people that are working the front lines are to be thanked. It could be far worse, and while it is quite an odd time, the key is to be grateful for what we have. Sure I wish I could be kicking back watching a baseball game, enjoying the sounds and smells of the game that's so much fun. Yes I'll admit it would be super to catch a movie in a theater, but these are first world problems that just require a change and will eventually be back. Wherever you are, much love to you and yours, and let's keep checking on those who truly do need our help and support.

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