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.

Saturday, August 25, 2012

The Angel Quilt Project: Love in the Midst of Pain

Finding your child unresponsive, or having your child have a health ailment that causes death, is a painful ordeal that I would not wish upon anyone. That is because I know firsthand what it entails, and in addition to the shock of going through the initial pain, there's so much more to follow. With that being put down here, life does go on. Parents, grandparents, siblings, and friends will experience a plethora of emotions. It is such a crushing blow. I still cry thinking of seeing Tommy in his casket. Yes he looked so at peace, but a five year old child like that. My boy. Our family's "laugh and smile machine." Gone. That casket closing. Putting dirt upon our own flesh and blood, who is a child.

There are all kinds of cliches that can be used. Yet there's no need. The death of a child is so awful. Families go through this never get over it. It does not mean that they won't be happy again, but they will not be the same. Angelman Syndrome is something that folks across the world are affected by. It is caused by a partial deletion of chromosome 15, but what it takes away, actually makes for a better human being than can be imagined. Each angel that I have met is a fighter, with a level of resolve seen no where else, and most importantly love. When you get a hug from an angel, there are no words to describe it. Whether you believe in God or not, there is something about it, that is spiritual in these hugs, and this display of love that all of us could learn from.

The Angel Quilt Project, created by Susan Salisbury Winfrey and staffed with volunteers, is an effort people from every background can be involved with. She wrote about how heartbroken she was, to learn of other angels departing this earth, leaving families who's lives are turned upside down by the loss of their little girl or boy. With her pain, she decided to do something admirable, and that is to provide comfort to these families. She is an angel mom herself, and other parents who have an "angel", have stepped up by producing beautiful quilts to these families. Blanket them with love. The Angel Quilt Project is that, because when Tommy died, I felt like the loneliest human being on the earth. I thought "no one is going through this." Yet there are, whether it be those whom have children with Angelman Syndrome, or any other medical diagnosis or none whatsoever.

Right now angel families are missing laughter and smiles in their house. They are missing the child who can light up a room, just with their mere presence. By all means, if you can, just $10 will provide a picture of an Angelman child to be placed upon a quilt, that will have lots of "angels" on it. That's less than a loaf of bread, milk, and eggs when put in your grocery basket. It provides sustenance, true nourishment to a bereaved mom, dad, siblings, grandparents, and family members going through such pain. Each quilt created by this fine endeavor, goes to a grieving family, and is a tangible example of "You are not alone." It helps with the grieving process to know that, fellow parents with an angel have gone down this highway. Also, it is reassuring to know that people care, at your time of greatest anguish.!/pages/The-Angel-Quilt-Project/267961783227848. This is the link to the Angel Quilt Project. It has already helped fight seizures, often the case of an angel getting their wings too early, but even more important, families from around the world have a beautiful quilt, with their angel missed in the middle, surrounded by other children whom have Angelman Syndrome. People with golden hearts, are quilting away to make other families, know that they are loved through this effort. All that is needed is your help. Please do what we used to call in the Boy Scouts, a "good turn." This is more than that, but a $10 donation will pay for a square on a quilt, with a smiling, comforting picture of an angel to a bereaved parent. Love is the answer, and while all of us in the worst club imaginable hurt, many of us are inspired by this effort. It is more proof of our interconnectedness, and to a family at their darkest of hours, it offers a beacon of light where no other one is available.

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