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.

Tuesday, September 25, 2012

"What's a Parent Who's Lost a Child Supposed to Look Like?"

I hope my beloved wife Nani doesn't get the shotgun out for this, but she was quoted first with this statement, in the Washington Post. It is profound, and much like her, it is wise and based on sound judgment.  In the article about our ordeal with Tommy's passing, she talked about how a co-worker said, "You don't look like someone who lost a child." Her response that titles this piece is right, on so many levels. First of all, damn if I don't love her blunt but honest answer. Its frank, and gets rid of all the background noise, or the dancing that is done, to describe the process of what it is like.

There are millions of us who walk on this earth, who have been in this very position. We are around. Everywhere. In every country, every faith, every label that can be attached. I often wonder how that father I saw, when I was in the hospital with Tommy is doing. That doctor telling him, "We did everything we could," as he cried into his hands. I often think of other parents who have been down this road, or recently have experienced a pain that is best not endured but is. Often I think while driving at random places, and just reflect on what others are going through. What's the meaning of life? Honk.

I think of Tommy every single day. There's no doubt that these other parents, do the same. Coach Tony Dungy said it best with "I'm still grieving." Every day for the rest of our lives, my wife and I shall be. Yet we want to live. We want to continue on, even though our path has been bumpy, and continue to be productive citizens, and members of our communities. Anniversary dates are painful, and often we do not go out on those days. Looking at Tommy's pictures, bring wells of tears up, of what is missing in our lives. It hurts so much, and our family now has to contend with telling Tommy's younger brother about him.

Its up to each parent to decide what is best, but I believe strongly in honesty. The night that my boy asked about Tommy's handprint, I told him through tears, about who Tommy is, and how he made that picture. As he grows older, I'm going to tell him more, and there was an excellent article the other day about dealing with death and children. The approach was straightforward, as it was explain that whether its a fellow sibling or pet, to be upfront and say that they have passed away. They weren't put to sleep or have gone away, as that only leads to confusion, and a child wondering when they are coming back. Death is not the most easy subject, in fact it makes the telling of the birds and the bees quite easy. Yet it is imperative to acknowledge it, and explain to children with a ruler, that most people do live long lives.

My heart is always with families going through the loss of a child. While we may handle the tragic pain differently, a lot is the same. There is an understanding that goes far beyond words. Its instinctive, and it does not require any special gifts, just compassion and knowing what another grieving parent, grandparent, or sibling is going through. If you are ever wearing these shoes, do no harm to yourselves or others. Life won't be the same, it will be a "new different." Yet that does not mean it will be necessarily bad. In fact, I enjoy life still, even with the pain that sometimes tears at my heart strings. Each day is truly a blessing, and should be appreciated as such, because it is a gift to be alive, healthy, and full of energy.

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