I haven't posted a blog in a while. I'm never sure what to say. My words are never as eloquent as Pat Furlong's or Brian Denger's. The gift for words has always seemed to escape me. My gift for finding the right words was really put to the test this week.

On Tuesday morning, on my way to my office in Buffalo, I found out that one of the families that helped me fundraise for Coach to Cure MD in upstate NY had their 4 year old son pass away without warning on Monday. Devastating news! When you have a young son with Duchenne, you think that you will be there with them at least into their 20s and 30s. You meet older Becker/Duchenne patients like Pat Moeschen and Josh Winheld and think that there is hope for a good quality of life and find inspiration in what these older men are doing with the lives. No parent is ever prepared to deal with the loss of their child.

I was asked to visit with the Mom for a little awhile on Tuesday. She really needed to talk to a Duchenne Mom. I spent Tuesday afternoon with the family and was able to provide some comfort. I don't think my words were all that inspiring. I just suggested that they remember all the fun and happy times that they had with their son and that God has some grand plan, of why their son was no longer on earth. We just were not sure of the plan really is. I also sent them a note with the following poem:

When you feel Lonely

When a person you love passes away
Look to the night sky on a clear day.
The star that to you, appears to be bright,
Will be your loved one,
Looking upon you during the night.
The lights of heaven are what shows through
As your loved one watches all that you do.
When you feel lonely for the one that you love,
Look to the Heavens in the night sky above.
~ Author Unknown

I have always found that thinking of my loved ones in this way helped me get through the most difficult times in my grief. I hope that somehow in some small way I was able to help comfort this family.

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Comment by Christine Piacentino on November 9, 2009 at 11:00am
I agree, it does go beyond any understanding of the universe.
Comment by Jacobs Mommom on November 9, 2009 at 10:24am
I don't care what caused it. It's just sooo very heartbreaking for the parents and family. No child should die at such a young age. To be adopted and given a chance at a wonderful life and then to have it taken away just goes beyond any understanding of the universe.
Comment by Christine Piacentino on November 9, 2009 at 7:34am
We don't think it was Duchenne related he was adopted from Russia, so there was no family history. He had all the cardiac tests and pulmonary tests, there was nothing that showed up.
Comment by Ofelia Marin on November 8, 2009 at 6:11pm
Very, very sad! Was his passing DMD related in any way? It seems too early for that...

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