June

I don't think there is anything much worse than watching your child suffer. I can't believe we have crossed into this place. I knew it was coming. I have hope we can control it better. He woke up a few times in the night with pain and most recently at 5:00 am. So - I am awake now. I have a monitor next to me and I can hear his occassional sighs of discomfort. I really want him to get to have his birthday party today and enjoy it a little. In December I really didn't know if he would be alive in June. He has done so well that I have let myself hope for more time. My superstitious side has been worrying about the month of June. He relapsed in June the past two years and it has been my fear that this year he will die in June. Recently, I have felt optimistic that would not happen. Now, on June 1, I am not so sure.