Back in the beginning of October when we received the news that Rory was back in Chronic Rejection, I felt like I was handed an ice cube.  Told, don’t let it melt. Whatever you do, don’t let the ice melt because once it’s gone that’s all the time you have.  In that moment everything froze.  Overnight, everything changed.  

Our freedom to do what we want…. froze 

My job…froze 

Our social lives…froze 

In all honesty, it can feel isolating sometimes.  I miss my other life, and I know Aurora misses hers even more.  Life has fallen into a routine for the moment.  Two days a week we go to appointments and physical therapy at Boston Children’s Hospital, where Rory is working extremely hard at reaching her goals.  She is exceeding her home PT goals too.  Having this reward system was absolute genius and has been a huge motivator for her. I know a question many people have wanted to ask me is, how does someone get stronger if their health is failing?  The answer is, I don’t know? There is so much I don’t know and am afraid to ask.  What I do know is I see her getting stronger each week, so it has to be possible.  The body is capable of doing amazing things and I hope Aurora can keep pushing herself.   We’re not better and there is no going backwards, but we also aren’t worse so that’s a positive I’ll hold on to for the moment.   We have not heard from Duke yet.  Which is ok because she needs to be stronger before we go. All I do is think about this ice cube and everything I can do in my power to stop it from melting.   

 So, for now, we are here frozen in time, trying not to melt.