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.

Monday, September 17, 2012

For Those Who've Lost a Child, Compassionate Friends and Other Resources

To each their own, with regards to handling the loss of a child. You are going to go through Anger. Denial. Depression. Bargaining. Acceptance. You will feel guilt, so many "what if's," that there's no way to count so high, and a plethora of emotions that cause you sleepless nights upon days of despair. I'm about three years in to my son's passing at age five, and not a day goes by, when I don't think about him. Tommy would be eight years old right now, in the second grade roughly, and I stopped by his grave today. I look at his younger brother, and often catch glimpses of him. These bring peace, along with tears of happiness.

Yet there are moments of temporary despair. It seems sometimes the floodgates open. This is especially true during anniversary dates. Tommy's date of birth July 21st, is a day that I spend away from others. November 4th is another one, that I choose to isolate myself, because it is the right thing to do. It is my duty to spend time with my family, and also necessary to, reflect quietly about Tommy's life with a cigar in my hand on the back patio. I often still think, why on earth am I still alive, why did he have to die, and what could have I done better. This pain will stay forever, I am convinced, but it has been a learning experience. One that I hope no one else has to go through, but one that many have done before, and others shall today or tomorrow. My heart is heavy for these folks, as they are going through an excruiating soul searching experience, that shall knock everything they've come to accept upside down.

A lot of younger folks, I'm a Generation Y guy I think, have told me that they like the computer, social media sites such as facebook and Tumblr. These are all cool, and I'm actually grateful for facebook and email, when Tommy passed away. I didn't want to see anyone, it would have just been too painful, and the messages of support and understanding meant a lot then, and still resonate with every footstep taken. Whether its the Millenials or Z's now, these are just labels, but young parents are going to lose their beloved son or daughter. It could come from a car accident, a illness, or a seizure. The way death rears its ugly head doesn't matter, as much as the pain that is caused by it. That is what you'll be forced to face right away, the shock and hurt, that accompany you along every moment that you are awake and asleep.

Compassionate Friends is for parents who have lost a child. They don't judge you. You can meet them at meetings if you like, as most areas have a chapter. Your belief in a higher power or not does not apply here, nor does anything at all, other than you are surrounded by a group of parents who have been in your shoes a bit. If going out isn't your thing, that's okay. On facebook, there's a compassionate friends group, along with one from the Elizabeth Kubler Foundation. These both have similar goals, although the EKR Foundation appears, to be going through a shake up at the administrative level. Hopefully that will be resolved soon.

You will never get over the death of your child. I have not, and never will. Even if I am lucky enough to live a long life, as a wrinkled, grey, ripped apart man, my heart will ache for my boy who's missed each and every day. That's okay, as that is the order of things, and I've got plenty of companions on this road. Looking at Tommy's younger brother, my boy who was once that little baby, has been helpful on so many levels. Who knows what the future holds, but life is a blessing each and everyday. Last night we were in Tommy's playroom, drawing ice cream trucks and motorcycles. Yes, the ice cream trucks have been drawn thousands of times. Yet that's okay, as its a reminder to appreciate the small things in life, even if they are that van that goes through the neighborhood during the summer months. I miss you Tommy, forever and always, but your memory lives on.

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