Thursday, 12 July 2012

New friends

Jayden seems a lot more tired after treatment these days. A lot more moody during the day and more cranky. He even looks more tired.
I'm so glad for him that he only has three more days of treatment to go. Not glad that he will be then beginning chemo treatment but at least he will have radiation soon behind him.
Still working on taking one day at a time but often thoughts of the future take over.
Hard not too.
Met three wonderful women and their sons yesterday, all boys have ATRT. I felt like I had met friends I will know now forever. A club I am now a member off that no one would chose to be but I'm a member of all the same. Women who are familiar with my hurt, sadness and fear. All three have sons that completed the same protocol as jayden. All three Understood the nightmare I'm living for they have all lived it and will forever sleep with one eye open. There is no real end to this nightmare. Only a case of taking one step at a time in the hope that all the steps needed to live the long life I dream for jayden will be taken. All these women have the same dreams as do all mothers for their children. Our club however has sons with far more obstacles to overcome before they fulfill that dream.
Above: Four beautiful boys!

I'm laying next to my little man right now. He's had a big day. We all have and we all are in need of a big sleep. I feel like I need five days solid of sleep, like I'm carrying a huge weight on my shoulders every day and at the end of each day I just want to put it down and rest. But there is no disposing of it, Not this weight.


  1. What beautiful brave boys these four are!!! So great of you all to catch up, and I hope this has given you hope for Jayden. Very encouraging to know they are all on the same protocol ;-)
    Lots of hugs & kisses Nadja

  2. You are correct, Leisl, you're now stuck with us! :-) So happy to have met you, and thank you to Nadja for reaching out. It was a wonderful day.

    Thank you for hosting us, and we'll continue to send healing thoughts to Jayden.
    Lori and Issy