Every week Aurora and I must have a hard conversation about something.  Most topics these days revolve around something difficult.  The first hard conversation this week was with our Nurse Practitioners. Exceptions are made when Boston does not perform or specialize in something such as a third transplant, so insurance acceptance is working itself out.  It may take a few weeks or even a few months to get approved. But we have faith it will be approved, and we’ll get there. 

What was hardest to hear was that if Aurora went to Duke now for her evaluation there is a chance she would fail because she is so deconditioned. An evaluation is not a guarantee of transplant.   She must meet specific physical criteria to get accepted and right now she most likely wouldn’t.  This means starting the rehab process here in Boston including extensive physical therapy.  This will be the hardest part of the journey. 

There are times she looks at me and I can feel exactly what she is thinking without us having to speak.  What we’re asking of her is very hard and there is fear and doubt creeping in all the time.  The brain is a powerful thing and can often believe the things we tell it. Affirmations when done correctly can be powerful.  Not the kind you find online, but the kind you write on your own to give them meaning and purpose. She doesn’t often buy into this stuff, but it can’t hurt. The mindset to reach these goals will be just as important as the physical strength she’ll need.  As her mom, I tell her everything I know is true and how I know it’s hard, but she can do this.  I try not to let fear and doubt creep into my mind because once it does it’s hard to get back to a positive place.  This isn’t impossible it just feels like it is at times. 

Reasearch shows that the steps in reaching the goal are more rewarding than the goal itself.  Quality of life and new lungs are the ultimate goal, but they seem so far out of reach right now and very far in the distance.  We need to think of the small steps it will take to reach this big goal.  Of course, new lungs are the reward for all this hard work, but I want Aurora to be proud of every small step she takes toward the big goal of getting to Duke.   

I’m extremely lucky to have a supportive group of friends who are always on top of things. The are amazing at planning, fundraising and especially listening to me vent. They are also very creative and came up with a type of advent calendar, but for Aurora’s goals.   Each time she reaches a goal she’ll get a reward. They are helping me put it all together and there is an Amazon Wishlist on Rory’s Tribe FB page and on the About page here if anyone would like to help Rory reach her goals.  My hope is that the stronger she gets it won’t feel as impossible.   Anything should feel possible when you put your mind to it.