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Saturday, July 2, 2011

the night call

I arose from a deep sleep upon hearing my little Josiah softly ask me to come check his heart. I quickly pressed the return call button on the monitor to let him know I was on my way. Without hesitation I was up rushing to his room. Josiah immediately whispered he had dreamt his heart had stopped. Looking into his deep brown beautiful scared eyes I placed my hand gently on is chest. He appeared fine and the beats that I felt seemed some what quickened but not alarming. He asked if he could press the record button on his heart monitor to get a recording, in case his heart was acting up again. I smiled at him telling him yes that was a good idea and that maybe we should send the reading out. Some what relieved he had no symptoms of discomfort and given the fact he had awoken from what most likely was a disturbing dream, I felt myself lesson in concern. But still very heart broken that fear invaded my sons life in so many ways.

Life watch responded fast. Josiah's reading was not out of normal range but did show some increase in pattern. To put both Josiah and myself at ease I decided I would sleep on the recliner next to his bed. I laid a wake for the next several hours listening to his breathing and wondering how frightening this all must be for him. How frightened I felt. Hating how helpless it left me. Also wishing Josiah did not have to live with this added fear on top of living with Duchenne. The roller coaster ride was on again. Only now I had no idea if we were going up or down.

He did not awake anymore that night and in the morning Josiah did not make any comments about his dream. I was tired and still very upset that this new symptom had entered his world. Still though, very pleased and thankful the night before did not turn out to be an emergency episode. I watched as he played with his legos later that morning. Smiling and busying himself with building the cars 2 kit I had recently purchased for him. He seemed no different.

Today sadly though I felt control slipping from us, from me. In spite of every ounce of strength I put forth, Duchenne was gaining. We were losing and it teared me inside to admit. A friend once told me after her son graduated from high school at the age of 18 she felt sadness overwhelm her. While for most young people it was a time for a new adventure, for a child with Duchenne it had a different meaning.

I walked into the room where my Cody was playing a video game. In a little more than a month my Cody would turn 18. Having grown up with Duchenne I felt and understood what my friend meant. A child with Duchenne rarely made it pass the early 2OS. Today I was facing that same fear. The same fear my parents also had too. Unlike my friend though I would see Duchenne take both my younger sons. A reality I could not ignore today. Perhaps it was the new heart monitor making it all seem so much closer. What I did know was unlike my friend we now had cardiac issues attach itself to our already complicated lives.

From another part of the house I could hear Josiah sweetly calling me. Reminding me it was time to send another cardiac reading in. As if by some magic it was the tech on the other end of Life Watch that gave me my hope again. The readings were found to all be in normal range, very good for Josiah, and music to my ears. As if sensing my concern she reassured me every reading so far has been in normal range. I could not help but embrace my sons after hanging up the phone. At least for today I could help Josiah let go of his fear. I could reassure him his heart was beating strong. And possibly for just today the roller coaster ride was at a halt.

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