As a teacher you learn to approach a difficult topic with a parent like a sandwich. You start with good things, then hard to hear stuff, then end up on a positive note to ease the hard stuff. I’m going to approach this in the same way, for all of you and for myself.

Aurora has completed more bucket list items here in the hospital.  Our social worker found a wonderful organization called A Sister’s Wish. It’s like Make-A-Wish but for young adults up to 30 years old. Our first wish was for a live penguin to visit us, but too much red tape to jump through to make that happen. So, we went with our second wish, which is an organizer/designer to make our hospital room over. We have started the process, and we can’t wait to post before and after pictures for everyone to see.

Aurora is also getting a tattoo tomorrow, May 3rd. She is getting four hearts, each one drawn by one of her brothers. She is so excited to finally be getting this. Then, next week she is getting her ears pierced by a plastic surgeon here at the hospital. So that’s two more bucket list items she gets to experience. We have a resident doctor here to thank for the tattoo and for finding the plastic surgeon. She was determined to do this for Aurora and made it happen quickly. And on rare occasions we make it up to the rooftop garden. That’s our good news.

Now for the hard part. Aurora had declined in the last few weeks. The benefits she had from photopheresis last year have worn off. Even the Bi pap doesn’t seem to be helping anymore. She has stopped taking her meds because they’re not doing their job any longer. Her morphine has increased. She is taking more meds that help with her breathing and that make her more comfortable. She sleeps most of the day.  She now has a catheter because getting up to use a commode, even close to bedside, made her breathless, anxious and needing more time to recover. All these things send us further down the staircase, closer to the end. At the top of the staircase we could pause between steps, catch our breath, look around and pretend we had time. Now the steps are closer together and seem to be coming faster. I used to think the bottom of the staircase felt like an end-abrupt, final. The closer I get it feels more like a threshold, a place where the focus shifts. We have gone from fighting for more steps to making each one as gentle as possible.

Do you watch The Pitt? Normally, I don’t like medical shows for obvious reasons. I do like The Pitt, and parts of the show stay with me. The scene where Dr. Robby tells the family of a man dying there are four things you should say to a loved one. They are, thank you, I’m sorry, I forgive you and I love you. I’m trying to express each one of these when I can, so nothing goes unsaid. As difficult as it is, people don’t have this opportunity and wish they did, so I don’t take that for granted. On May 30th, we will be in the hospital for 365 days. I’m often told I carry it all so well. I don’t though. It’s the hardest thing I’ve ever gone through. Aurora’s body is tired, she’s tired. I’m tired. She has fought the toughest battles and has gone through more than anyone I know. I’ve told people closest to us to start to prioritize their time and try to be here for Aurora when they can. I think it’s hard for some people to see her this way and she may sleep through the visit. But she hears everything, sometimes wakes up enough to join in the conversation or watch some television. She knows you’re sitting next to her and holding her hand and that’s what matters to her the most right now. Just being here. This isn’t something I can make everyone understand. The world keeps spinning and people are busy living their lives, but before you know it it’s too late. We often get asked why we don’t go home and have hospice come in. As nice as that sounds, it’s impossible for us. I wouldn’t have this much support and help with her care at home. So here we stay, for how long we don’t know but I’m grateful for every day we have.