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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.

Wednesday, December 28, 2011

Gently I laid my hand across Josiah's chest. Even before I could feel his heart racing I could see beneath his shirt, rapid palpitating. Fear began to invade me as I looked into his deep brown eyes. Josiah knew what was happening, softly he described his symptoms to me while I adjusted his thin body on the bed. Trying to give comfort to both of us, I reminded Josiah of his last visit with his cardiologist and our discussion. Following her instructions I put a cool damp wash cloth across his head. His eyes followed me as though he was trying to read my face, softly he asked me if he would be okay. With out hesitation I answered yes. But my mind fought other thoughts.

I sat next to Josiah holding one of his hands in mine and placing my other on his chest. Definitely it was happening again. The rapid heart rate episode that had put Josiah in the hospital six months earlier was repeating itself now. I was given a completely logical explanation and diagnosis of what was happening with Josiah. I had been assured while these episodes are quite frightening and do require awareness an emergency room trip will not be necessary if he is able to effectively calm his heart rate by resting. However should these episodes continue to happen there is some great concern. So here it was again, a reminder of just how much control Duchenne had over us.

Christmas was in three days, that notion rested heavily on Josiah's mind. He did not want to spend the holiday in bed. As my Josiah and I waited out the rapid beating together I tried to find things to help take his mind off our present concern. I tried to talk about what Santa might bring for presents. However Josiah had other things he needed answered and the question was- Is Christmas celebrated in heaven? He needed strength from me now and hiding my own fear was slowly becoming harder. Fast this was becoming quite an emotional time of year for me, not only did Christmas remind me of the anniversary of my mothers passing but also of the child I lost in a miscarriage. I curled up next to Josiah holding him close, telling him this time of year is so magical. It is celebrated in so many different ways such as Christmas, Kwanzaa, Hanukkah. Heaven most likely celebrates in the most glorious way. Most importantly I told him I do believe in Christmas miracles and he was mine.

Josiah's heart rate was elevated for 15 minutes. He rested for a little over an hour and then asked to be helped to sit up to play Lego's. He did not complain of anything the rest of the day. It was a very long fifteen minutes while I watched over him. I battled with my self resisting to call 911, trusting in the instructions of his medical staff and pleading with heaven. By night fall I surrendered to tears in my room alone. Tears because I was so thankful that Josiah was better and that somehow I always managed to be what my sons needed. Tears because I am human and at the end of most days I go to bed holding my breath afraid that somehow it might not go so well next time. Tears also because at the most wonderful time of the year, I am reminded once again of the magnitude of how alone and helpless we can feel in this world. Tears because of the guilt I felt in a weak moment, wanting just this one time after consoling my son, to be held.