"This condition is fairly rare and as such we cannot say with 100% certainty what the symptoms will be or even how much time you haven’t left."

The doctor's words made my head spin. He was basically saying that at any point I could just drop dead. I had been ill for the last several years and, sure, I was glad to finally have a name for my condition (even though I couldn’t actually pronounce it)but I was not exactly thrilled with hearing that I was going to die.

The car ride home was uncomfortably quiet. Which was fine with me, I didn’t really want to talk anyway. I just kept going over and over what the doctor had saaid. I didn’t want to leave my family. What would they do without me, would the boys miss me? As we pulled into our street my husband said, "Hey it looks like the kids are home." He was trying to keep everything calm and act like everything was fine, but it wasn’t.

Over the next few months my condition deteriorated at the end I couldn’t even breathe unaided. I was constantly attached to an oxygen tank that sat in the corner of the room. I know everyone says that they want to go at home, surrounded by family but as I watched my husband try and comfort my two silently crying sons I thought, "If I had a choice, this wouldn’t be how I'd choose to go;.