carolyn stewart
  • Female
  • morristown new jersey
  • United States Minor Outlying Islands
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Profile Information

About me:
i am the mother of a 14 year old son with duchennes, Emmanuel passed away on September 26, 2012 of heart failure at the age of 16.
Name(s) of child(ren)/individual(s) with Duchenne:
emmanuel
Age(s) of child(ren)/individual(s) with Duchenne:
13-18, 19 or older
City:
morristown new jersey

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At 12:17pm on March 12, 2013, Andrea Cleary said…

Dear Carolyn,

The way you describe Manny and your love for him...what an immense feeling of loss for you...I am so sorry. Of course it's difficult to return to work, your mind is always returning to Manny looking towards you. Instead of always in your thoughts, try to set that image as a memory in your heart where it will always remain, a gentle and loving reminder of your brave son. Have you ever meditated or tried to visuallize something? Try it, just sit quietly, eyes closed and breathe, then visualize that touching moment actually moving from up in your head to find a spot in your heart where it will be warm and welcome. Then you can visit it when you want and need, but not all the time. Having it stay in your head is too traumatizing. I'm not too kooky, Carolyn, honest. I have not lost my son, but your story has touched me and I wanted to reach out to you. Please take care of yourself, Andrea.

At 1:48pm on July 6, 2010, David G Evans said…
Hi Carolyn

Hi this is David Evans

I am 17 years old and i have Duchenne Muscular Dystrophy. I have been searching for someone else to talk to who was the disease. I live in Robesonia PA.
 
 
 

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