Each time I sit down to write this post I have to stop because this is not the news I want to share with you.  Almost two weeks ago we had a meeting with Rory’s doctors who told us that even if we make it to Duke her chances of passing the physical exam are and I quote, “marginal at best.” Duke’s list of physical requirements for a third transplant are very high and Aurora just isn’t physically able to meet them despite how hard she is trying.  Her health is just declining too quickly.  They can’t tell me how long she will have; it could be a few months to a year.  But at the rate she is declining it’s probably not going to be very long.  There is a part of me that still wants to hold on to any unrealistic optimism because in its place comes soul crushing despair.   

Aurora and I are having conversations no parent should ever have to have with their child. How does she want the end of her life to look like. She made a bucket list which I will share with you in another post soon. Better have your tissues ready for that post. I’m still trying to read through it without completely falling apart. Because of her health I’m not sure how many things we’ll be able to carry out, but we are going to do the best we can with the time we have. I’m hoping many of you can help me with some of the things on her list. 

I go to bed crying, I wake up crying and I spend most of the day trying to hold myself together. I’m overcome with waves of grief that feel like they are going to pull me under, but Aurora needs me, so I push my way out of it.  It constantly overwhelms me. What Aurora has told me is that she doesn’t want any toxic positivity. Don’t say there is still a chance or that somehow it will all work out.  It’s not going to be ok, and we know this.  For now, Aurora is going to continue with physical therapy and her treatments for as long as she is able.  There are a lot of questions I still need to address but I haven’t been able to face them yet.  Getting through this post and letting the world know where we are at is a start in trying to face what’s to come. 

If you have texted me, called me or tried to make plans with me I apologize for ignoring you.  Right now, I’m not sure how to function in the regular world.  We love you all and will now more than ever need your support to get through the next unknown stages.