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, October 25, 2011

The Angel Quilt Project: Fabric of our Loves, and Our Mortality

Holding your child's hand, as they stop CPR is the most painful event, of my life and I still think of it often. Walking down that hallway after the ambulance ride, knowing that my son indeed would be dead, was akin to the green mile. I didn't like walking down that corridor, which wasn't long, but felt that way. As I walked into that ER room, seeing my son with his eyes open, and a trach tube in his neck, and having snapped at the paramedic who got me, I knew this was it. The rescue personnel and doctors and nurses, they had done all they could, and I knew the harsh reality. A woman's voice told me, "Okay Dad, hold on to his hand as we stop CPR." I don't know if it was the nurse, or a social worker who was an angel in every regard, but they stopped and the room emptied of people. I was alone with my beautiful little five year old boy, until my wife, and the grandparents and my brother showed up that dreadful night of November 2009.

Trembling, crying, and in a way living this experience as if I was not a part of it, I don't remember much of this night. I remember being at home thinking, my son is all alone, in the morgue. The anger of a red book on grief, when my son wasn't with us was palatable, and tension, and every emotion but mostly tears, seemed to be the order of that night. There was the road of guilt, pain, sadness, and anger that had to be dealt with later, but at the time, it was mostly shock. How could I be that guy? How in 2009, with modern medicine, in an area with phenomenal resources, could my five year old son be dead. Dead!Dead! Dead! Gone forever! I would never see him again. Not only until he was in his coffin, which is an experience I still cry about today, would I see my little blue haired, blonde haired boy who taught our entire family so much.

Tommy's clothes bothered me, items that he loved caused such pain, such tears to flow. I can't count how many times, that I just simply walked away, unable to take it all in. Coach Tony Dungy, of the Indianapolis Colts and Tampa Bay Bucs says it best about losing his child, "I'm still grieving." That is the case, as my family and I will never get over Tommy's passing. Yet we shall get through it. A good friend named Darren, from the land of Oz, has a description that I'm going to borrow from him, and I hope he's okay with it. "Journey." No, not the 1980's band with the bad hair, but that's what life is, a journey. Darren found out about Tommy's passing, as he's also an "angel dad," and that night, from across the world, got parents of Angelman Children to sign messages of love and support, and they arrived at his memorial service.

It meant more than words can describe, and I still read it from time to time. This provides a level of peace, to know that others felt the loss of Tommy, and after a path of many twists and unforseen turns, my faith is stronger than ever before. I miss him all of the time, everyday I think about my little boy. Yet I have no doubt that God will allow me to see him again, and that he's in the Lord's loving palms, as are all children, who are completely innocent of anything of this fishbowl of a world. The Angelman Quilt Project, has led to a lot of smiles and tears. Do I wish it didn't have to exist? Of course, yet I am thankful that it does. This is an effort, led by Angelman parents raising funds for fabrics, creating these quilts that have the "angel" whom passed away from an accident or seizure, and is given to the parents whom miss their little girl or boy.!/pages/The-Angel-Quilt-Project/267961783227848. Please "like" this project, and if you can read more there. Its proof that we are all connected, as while these parents have an uphill climb, they will get through these trials and tribulations. They are not going to be easy by any means, but with each day beginning anew, there are still lessons and reasons to "carry on." The Angel Quilt Project delivers these quilts to families in profound grief, and are tangible objects, that can be held or placed on a wall to remember that their child meant a lot to them, and so many more. Each quilt has their little one, surrounded by fifty other children with Angelman children, to show the support and circle of life that we are all a part of, and that even though their pain is great, they are not alone. That's the key to a lot of it, because as I have walked around my son's cemetery, I realize that there are so many more in my heavy shoes, that have had to experience this pain, an although I am saddened by this, it also is a sign that there are others out there that need to be supported.

That's where you can come in. This quilt project, for just $10 will guarantee a patch of an angel child, to be sewed on to these quilts. Any extra funds are going to Vanderbilt University's Kennedy Center Angelman Seizure Project, so good does come from pain. While we all hope and pray that no other angels will be taken before their parent's time, when not if is sadly the reality. Children with this condition, like Tommy, are champions in every regard with their love, their laughs, their smiles, and also their determination to never give up in the face of so many challenges. To those angels, like Tommy who are now with our loving creator, you are at peace. To their families, this project is proof of the love around you, and even though you are in pain, and will be for the rest of your lives, there is still more good to experience. You will everyday think about your little one, and there will be some tears, but there will also be some smiles and laughter as well. Hold on to those happiest of times, and be thankful for those moments, because life is fleeting and each day is a blessing. Thanks to all whom have supported our family during our darkest of hours, we miss you Tommy, and are proud to support the Angel Quilt Project at!/pages/The-Angel-Quilt-Project/267961783227848.

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