Better!

 Hope is better.  This may not surprise you, and it doesn't really surprise me either, but there is something surprising about the fact that she gets so very sick and then bounces back each time with no antibiotics.  This vomitting episode came so quickly after the last one, that we were caught by surprise.  Each of these episodes brings a heightened awareness of the fact that Hope and Ashley will not live very long.  Every time Hope begins vomitting and then the vomitt becomes bloody, we 'hold our breath' wondering if this will be it.  Is this the inevitable downhill slide. 

When I moved Hope to her bed one night, she stopped breathing and her lips turned blue, she gasped for breath a couple times during the 3 or 4 minutes her lips were blue, then settled and eventually started breathing regularly again.  It was totally random and who knows why she did that, but it didn't really surprise me either.  As I willed her to breath, I held her hand and stroked her head feeling completely helpless and vulnerable.  I prayed for her to have a peaceful death and if possible that we could be with her when she dies.  I prayed that whatever support our family would need, would be met because I don't know how to prepare for that day. 

Once she pinked up again, I got back to work and prayed that I would remember to make time to have a special moment with each girl more often because it is too easy to get busy and stay busy.  Then I carried on because Alex was gone with Brodie to hockey and I needed to get meds and feedings and diapers done before it was time to feed the baby. 

This may seem odd to some, but not to me.  Not when I've been faced with these moments for over five years.  This is my normal and I'm not sharing this to get sympathy, I'm actually finding that I process things better when I talk about them.  So, here I am...talking...to you!  Thanks for listening.