May 20

• Ariel got to walk with Ignacio today. I was at home working and didn’t see it, but how wonderful and amazing. Tomorrow, we have a family training session together.
• I’ve come to love the work: I’m proud that I’m approved to transfer Ignacio from wheel chair to bed and back. I hope tomorrow to get approved to transfer him to the toilet and back as well. On the one hand, I’m trying to run a $90,000 tango festival, and on the other hand, I’m hoping to have permission to put my boyfriend on the john. My life has become very, very strange.
• Things are really coming together to bring Ignacio home. I keep wanting to sneak him out before the festival, so he can visit it. Yesterday, he said about the festival, “But I won’t be there,” in a way that made me so sad. We know that the best thing for him is to benefit from the therapies and all the care and safety at Moss a few days more. So we have to stick with the plan, but I keep wanting to break him out.
• Monica and Andres will be trained on Thursday so that they too can help out with Ignacio, after the festival. Monica can stay until about June 7. Andres will stay until mid-September. It’s absolutely amazing how Andres has stepped up to help. I am so grateful.
• Desperate to sleep now. More tomorrow.

May 22

• One week from now, Ignacio will be home. We’ll be able to sleep in the same bed for the first time since March 8.
• His memory, aphasia and perhaps cognition seemed to take a step back last week, but now they have jumped forward again. Linear this is not. Whenever I have experiences of him that are definitely “more Ignacio,” I feel sooooo happy and hopeful. And then when, last week, he often seemed “less Ignacio,” it put me down in the dumps. But today, he was way “more Ignacio” and it feels so good to spend time with “more Ignacio.” I love him so much. (Thank you to Jennine for EVERYTHING, including giving him an adorable haircut yesterday. That also has helped him be “more Ignacio.”)
• Both Ignacio and I are so much looking forward to spending time at home together. To trying to learn to be present and appreciate all the little daily moments of life. I find it to be a huge challenge, but now is the time.
• One really cool thing I’m reading about stroke recovery is that, even though Ignacio will keep doing speech, occupational and physical therapy for a long time, it’s important to not just think about his therapy as therapy. Rather, ever single time he engages in life, talks to someone, takes part in an activity, is outside observing, taking a wheel chair walk, making dinner, doing simple yoga, practicing walking together, giving someone advice in a tango class that he can’t teach yet, anything, it’s all therapy. The only non-therapy is doing nothing, except when you need to rest after doing a lot of therapy. When you need rest, that too is therapeutic.
• Today, I told him my vision of us starting to walk around the studio, the way I’ve been learning in family training, assessing with each step if he has transferred his weight and axis correctly, checking to see if he has passed the next leg (especially the right) to the correct place (not too close to the midline), and in the correct order (cane, right leg, left leg), and everything else that currently goes into his walking safely. We’ll start with this very detailed, very challenging walk that we’ve just learned to do together, and once he’s home, we’ll do it around the line of dance. We’ll practice it every day, and little by little, the walk will get easier, he’ll need less support and then no support from me, and over time, without our even realizing it, our walking practice will become him leading me once again, in tango, as it should be. The walk will evolve so seamlessly that we won’t even realize what’s happening, until one day we find ourselves walking tango. We agreed. It’s going to be like that.

May 23

• Today, for the first time since March 9, Ignacio has no tubes in him. They took out the peg tube (for giving nutrition, liquids and medication directly into his stomach) today. Just typing that reminds me of the emergency room on March 9, when I was sure I was watching him die, most likely literally, and if not, at least intellectually. I am nowhere near over that moment. Nowhere near. But in that moment, they asked me for permission to put a drain in his brain, to relieve the pressure from all the blood that had hemorrhaged, and give his brain a chance to survive and to eventually heal itself. They put in the EVD, the drain, as well as intubating him, and more, and we started a journey of nearly 11 weeks in which Ignacio’s life was sustained by outside intervention (tubes, monitors, cables, drains and probably other categories that I’m forgetting). For the first time since then, the envelope of his body is closed. What a huge thing to achieve!
• Today, Monica and Andres went through “family training” in order to be able to help me at home with Ignacio. (When I told Ignacio yesterday that that was going to happen, he was like, “Do we get to choose our family?”) Neither Ignacio nor I expected Andres to become family (again for me) like he has. But it’s been remarkable how much he has stepped up, and how dedicatedly he has been helping. And we really need the help. We do.
• After working on the festival all day, I drove Juan & Pato up to Moss, and the six of us (Monica, Andres, Juan, Pato, Ignacio and I) hung out and sang and listened to tango and Argentine rock together for two beautiful hours. Juan knows Ignacio’s milonguero preferences better than almost anyone. He kept saying, “follow me!” and starting songs that he and Pato had never played before, but that he knew Ignacio wanted to hear. And Ignacio sang or mouthed along all the lyrics, to everything. He has been doing that since he was unconscious in the hospital. It’s uncanny that the theme of this festival is La Poesia del tango, because tango lyrics have been a lifeline for Ignacio and for us throughout. They were one of the first things that led me to suspect that he was still in there, when I felt that the doctors were writing off both him and his chances of coming back. Over and over again, they have brought us together with each other and in these miraculous hospital music sessions that we have been blessed to experience. Surely he’s the only patient who has enjoyed four private concerts in the course of his hospitalization.
• In 6 days, Ignacio will come home, and Juan & Pato will play at the milonga to welcome him.

May 28

• The festival was unbelievable. Despite everything, including me not being able to work nearly enough on it, we pulled it off and it was absolutely beautiful. It was my favorite festival yet. Huge thanks to Ariel Ondartz whose presence with Ignacio allowed me to hold / run the festival. I saw Ignacio 1-2 hours a day during the festival, and Ariel was with him 12 hours a day. In the time he has had his brother there, Ignacio has improved enormously: in strength, coordination, and in terms of his aphasia, which is still sometimes present, but sometimes completely absent.
• I didn’t see it, as I was running the festival until 4 am, and then back to clean up at noon, but today in therapy, they tested Ignacio. With a spot, but not needing intervention to hold him up, they tested him standing alone, and he did, for a while. Then they had him lift up one foot and stand on one leg, and then the other, and he did it. They had him go up and down a single stair, with no support. I feel like I am lying as I write this, but it’s what Ariel told me. The speed with which he is gaining strength is so surprising that I can’t imagine him doing these things that he is purported to do!
• IGNACIO WILL BE HOME TOMORROW, which is actually today, as I’m writing after midnight. I am about to go to sleep alone, but the next time I sleep, we’ll be together. Gracias a dios!