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Friday, December 30, 2011

Lost in my thoughts I walked slowly through the mall. Remnants of Christmas still lingered in the store front windows, next to large sale signs. Unlike the weeks before Christmas the crowds of mall shoppers had diminished. However, tonight youthful noise bustled all around me. I noticed a few groups of challenged young adults casually strolled around shopping with PCA's. No doubt the mild weather and low crowds made for a pleasant evening out. I smiled to my self as I watched one group gather at the pet store window. Laughing, as they watched two playful puppies wrestle around. It reminded me of my Cody and Josiah when occasionally we ventured out to the mall stopping at the same pet shop. I envision momentarily Cody with his classroom, a group very similar. I continued on my way to my next stop, feeling very happy to have been able to see how much joy watching those puppies gave them.

Behind me as I walked to one end of the mall I could not help but over hear the giggling of a small group of teenage girls. At one point it was almost as if the girls were walking next to me. As I glanced over, I immediately discovered what they had found so entertaining. Held out in one young females hand was a cell phone. On the screen she had captured in video the young man that had been walking ahead of me. Pointing and laughing, the group of (little Barbie want to be's) followed him filming. Partially slumped forward and slightly limping he strolled along. Hopefully I prayed, he was unaware. I felt absolute sorrow that his difficulties were an amusement. Turning to the girl holding the cell phone I remarked her behavior along with her friends was absolutely cruel. Not to any surprise she retorted back "old bitch" and laughed. I know that at best I only managed to brake up their mean girl party momentarily. While the groups attention was diverted to me and what they had managed to capture on tape, I watched as he exited the mall.

As the girls walked past me giggling I wanted to say something more. The impact of what had happened hovered over me, moving me more than I wanted. I could not help but think, this was the same mall my Cody had visited with his special Living Skills class. It saddened me deeply that perhaps this was the welcome my own beautiful son and his friends may have experienced at some time. On many occasions Cody has preferred to stay home rather than venture out into the community. Desperately, I did not want this to be the reason. I did not want to imagine that some how he had been subjected to bullying with out my or his teachers awareness. Both my sons have commented on the fact, they are very aware some people stare at times and it makes them a bit uncomfortable. Angered a bit at myself that I did not do more I left the mall. I knew that had it been my son I saw being victimized, I would have reacted much, much more.

I talked to my sons the next day about bullying. Cody very casually said "yep, sometimes people are just mean". "You just got to move away from them." Josiah simply told me he did not like mean people very much. I felt better that they did not have some deep hurt they were carrying around.

I wish I could have been more forward or found some way to humiliate those girls. I have to forgive myself for not being more courageous. It is my hope that I can grow from the courage I see in those suffering day to day, in a world that can be very unkind at times, and not so caring. I can embrace being called an old bitch, look out. On that note I now understand why Cody gave a Barbie he had gotten a hold of when he was young a haircut.


  1. I too recently experienced a moment were I wished I was more courageous in my reaction or lack thereof. It was on Christmas eve when an insensitive distant relative on my new husband's side asked blatantly in front of my 10 year old and 15 whom also have Duchenne MD, "WHAT IS WRONG WITH THEM"? My mother in law tells her about their "terminal" condition and this young 20-something year old says "DOESN'T TERMINAL MEAN DYING?". I was floored with anxiety then anger...I haven't even talked to my 10 year old about his life expectancy! I didn't say a word! Not one! :( still haunts me. I think I should have taught this insensitive child the hurt her curiosity causes. Sigh, I have sworn that I will no longer keep quiet from now on. Xo

  2. Veronica hugs to you. That was most undoubtedly a very difficult moment. As difficult as it already is living with Duchenne, we (our sons) still have to face the insensitivety of others. I have never really discussed death with my two sons who are 14 and 18. I have decided if they should ask I would gently talk about Duchenne and the expected future. It is such a hard situation and NO PARENT SHOULD EVER HAVE TO PREPARE THEIR CHILD FOR IT.

    I too had a family member -a great nephew ask them blatantly when will they die. The anguish that moment caused has never really left me. My sons both cried that day.

    Yes we need to be mothers and warriors who with hearts of gold and the strength to persevere through it all. Hugs.