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.

12 responses to “June

  1. I sure hope Nathan has a great party today! I bet he will try his hardest, even if he is not quite feeling up to it. That kid is amazing! As are you Susan. Enjoy this first day of June and the rest of the June days to follow. June days with Nathan. Thinking of you all!

  2. Here’s to a great party.

  3. We are sending you love from the Arizona Valley.

  4. Nothing but love from we in Washington state.

  5. Tons of love from us too Susan! Hope Nathan is able to enjoy his party!HUGE HUGS

  6. Sending our prayers from Louisiana.

  7. Positive thoughts from Michigan!

  8. Sending our love from across town. I really hope he will enjoy his party today. We all know he deserves it, at the VERY least. PLEASE let me know if you need anything, ANYthing. Praying for your strength and pain-free days for Nathan.

  9. You know my positive thoughts are always with you… All I want to say is have a Happy Birthday Party! Things aren’t how they should be, but I wish I were there to help eat the cake!What kind of cake did he choose?I wanted to call to sing “Happy Birthday Party Nathan”… but I figured you have enough on your plate right now.xoxo from Boston!

  10. I hope Nathan had a wonderful party. Thinking of you guys. 🙂

  11. ((((((((((((((((HUG))))))))))))))I am so glad things went so well today, and Nathan got do to those awesome fun things. They don’t ease the heaviness of your heart, I am sure, but hopefully you and Luke had some smiles today too. Lots of love,Lisa

  12. More love from me. xoxo

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