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,

**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 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 They are on Charity Navigator, and have done a phenomenal job over the years, on the awareness and research side.

Wednesday, August 15, 2012

My Heroes: Parents with Children Who Have Special Needs

Life is full of tribulations for everyone. No one "gets an easy ride," even if on the surface it appears to be the case. Yes there are folks who appear to "have it all," with money, a luxury car, perhaps a voice controlled coffee machine that can produce a cup of java from Kenya or Indonesia. Yet the bottom line is, that all of us do suffer. That's just the order of life for whatever reason, and one person's suffering or challenges, are different than others but regardless they shape who we all are. Right now there is a parent with a dying child crying their eyes out, or a young lady who's working at a job, who is struggling to do her best even though last night her daughter had hundreds of seizures. These people are around us everyday, and so often we look at the surface of others, but don't dig enough.

My heroes are children with special needs, but their parents are real champions as well. These children who have so many challenges fight, but their parents are very much involved, in every single aspect. The love and care that they show for their children is a testament to resilience, and the fact that they go to work, and often passionately soldier on in the midst of pure exhaustion, is a sign of dedication of unparalleled levels. Special needs parents are grateful for that strong coffee, and the support that they get from their families and friends. Without these "angels" who step in at times of need, life would not be possible. Yet I've noticed something about parents of children with special needs. They might have been up all night with countless sleep disturbances caused by their kids medical condition, or the fact that they've had to monitor their hundreds of seizures, to decide whether to call 911 or not.

These parents dedication is ten fold on the job. If I had a company, I would hire parents of children with special needs. The reason is simple. They are warriors. They have battle armor built into the very foundation of who they are, after fighting constantly for their children, but yet still have resolve to be the best that they can be. These folks are able to relate to the most difficult of people, because they have been down a road, so many have not. I do not have the business accumen or resources to have a company, but for those who do, you'd be well served to hire these amazing people. Yes, they might have to take an occasional day off, or be called away for their son or daughter being rushed to the ER. Yet, when they are on duty, they are "Go, Go,Go" despite circumstances that could easily thwart those who havent met this challenge on a daily basis.

Their creativity also is something, that can be used for innovations in technology. Ask any special needs parent, about their improvising skills. You will learn what they have been able to do, and while they might not have a medical degree, they are more knowledgeable than a lot of doctors. This is not a slap against those in the medical field, but rather, the reality of what these parents have learned from lots of hands on experience. Are there foundations and charities, that represent families and children with special needs? Absolutely. They are contributing to society in many ways, some of which, with regards to research that have the potential for cures that affect millions of people. Yet they would be nothing, without the blood, sweat, and tears that parents and families across the world give every single day.

To the parents of special needs children, my hats off to you. You know who you are, and you carry yourself with bravery, dignity, and class. So much has been thrown in your direction, yet you refuse to duck, but you stand up tall. Each and everyday you deal with what could be described as insurmountable odds, but still find a way to go in to work, and take care of business. Romans in the Bible describes endurance so eloquently, and Dr. Kubler's "beautiful people are from those who face the toughest of challenges," is so true. I do not know when there will be a cure for so many conditions, such as Angelman Syndrome or Rett Syndrome, or CDKL5 and a host of others that most have never heard of still. That has to change, for sure, as more people need to hear your stories, and realize that behind your eyes there's more to you than they could ever realize. Carry on, and God willing, one day that day shall come.

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