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.

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Comment by Andrea Cleary on December 29, 2011 at 12:45pm

Holding you in our hearts and mind, Rita.

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