Aurora & Harley

Talking is hard for me, so I write.  Writing helps to clear my thoughts; it’s my way of venting and not have the same tear-jerking conversation on repeat. If I don’t answer the phone or get back to you it’s not personal.  I read this poem the other day, and I don’t think I could have found one that better describes how I feel. I almost cry every time I read it because of how much it resonates.

I am fully submerged in water

And everyone keeps asking

If I need any help

Can’t they see

I can’t speak underwater

I can’t even breathe

We had a family meeting here at Children’s hospital last week.  Family meetings give me a lot of anxiety and a feeling of dread. We have them because they are important, get everyone on the same page and have the same information. But for me, it signals a turn in circumstances, a step downward to a place we don’t want to be. I go into them knowing it’s bad news and my anxiety tends to get the best of me. I don’t do well in meetings with large groups of people when it’s about us.  I freeze and go silent just trying to process what’s being said. (I know, it’s hard to believe I could be silent.)

Aurora is declining, her oxygen needs have increased, she is more and more short of breath, and her body is just tired. We have entered the last phase of the journey, and it breaks my heart. We are stopping Apheresis therapy because it’s not helping anymore.  We are considering stopping some of her anti-rejection medications, as they seem ineffective. At this point making Rory as comfortable as possible is the goal.  I have dreaded this moment and feel helpless to do anything about it. For now, we are going to remain in the hospital because of the extra support she needs to feel secure and content. We are talking about coming home and if I would be able to support her and make her feel safe and comfortable.  That’s hard when you can’t breathe.  We have options we are exploring, and Aurora will decide what works best for her, even if that means staying in the hospital. Aurora does continue to amaze us and it’s hard to say what the next few months will bring.

If you want to see Aurora in the next few weeks message me and we can arrange a time for you to visit, either here in Boston or if we get to come home, in Hudson. Although we may not be able to fulfill many of her bucket list items, I am optimistic about achieving a few while she is in the hospital or during the limited time we may have at home.  We may have a sip and paint here, get our nails done and maybe find someone who could do her hair here in the hospital.

I know it’s hard to know what to say and that’s ok. People often ask what I need, but I usually don’t know. I listened to someone recently say, what would you need if it was you?  There is no guidebook as a parent for these situations, no rules to follow and I’m left without knowing what to do. So, I decided not to do anything. I’m letting myself cry and be sad because I don’t know how else to be and that’s ok.

We do have a new fundraiser going for a stay at a beautiful house in Boothbay Harbor, Maine. Please consider buying a raffle ticket, sharing on social media or with friends. We couldn’t keep going without your love, support and generosity.