Escape from Alcatraz

This mostly felt like a long, tiring day. I didn't sleep much last night due to various kid shenanigans, combined with a brain that just kept chewing on the same old things.

Whenever I go more than a day or so without seeing Cora, such as when it's Jason's turn to be with her and mine to be with Dominic and Cosette, I get uncomfortable. In fact, as soon as I leave her, an internal clock starts ticking. It's a feeling similar to having restless leg syndrome (otherwise referred to by my friends and me as, "crazy legs.") When you just feel like you have to do something or you'll jump right out of your skin. Like this, not seeing Cora for any length of time makes me progressively agitated and as though I've been water boarded. I hadn't seen Cora since Thursday, and my crazy legs were at a crescendo this morning.

I hauled the kids down to Stanford for a visit, but the stars just weren't aligning for a magical visit. As soon as we arrived, Cosette (who our Auntie Marie lovingly calls a "spicy meatball") was in full effect. She was giving me her "I have no bones" routine. You know, the one where you try to pick up your tantruming child only to have her slither away like a heavy snake. Dominic, usually so tuned into Cora, wasn't too interested today. He did at least manage one quick game of peek-a-boo.

So I went in to see Cora, hoping to get my feel-good grounding, but it didn't really work. She wasn't feeling well -- increased work of breathing, pale, vomiting, and having trouble keeping her oxygen saturation high. I couldn't get her to look me in the eye. She had that agitated, antsy, far away look. Maybe she had the crazy legs too, I guess.

Tomorrow they will start her on an additional infusion of a new drug, which they hope will help increase her heart rate. With the slow beat and the terrible squeeze of her heart, she just needs more profusion.

The question I chew on in the middle of the night is, how will she hang in there for as long as she needs to? How will she balance on the edge of the cliff without falling off? Sometimes it feels impossible.

Meanwhile, this morning one of our dear friends raced the Escape from Alcatraz triathlon. She told me yesterday she was bringing Cora with her, and that she had made a bracelet that would remind her to stay strong. So Cora got to feel the chilly San Francisco Bay today through our friend Liz, and the thrill of a bike ride, and the burn of a really brutal run. Liz told me afterward that thinking of Cora gave her the oomph to make it.

Also meanwhile, I received so many loving notes and comments today -- more evidence that there is a circus-sized safety net a few feet below us at all times.

I literally wrestled my kids down to sleep tonight. I was so tired, it was so late, I was so done. But finally they silenced, and all is of course forgiven once the kids surrender to sleep. As I left the room, Dominic breathed that huge sleep sigh, the baby breath, indicating he'd passed over into dream land. It washed me with love, as it has every time I've heard that sigh since the day he was born.

Then I turned on the computer to write this, and I saw a note from another person who I don't know, and probably will never meet, but who prays for and thinks of Cora. This one was from a mother who tragically lost her four-month-old son, and who was brave enough to give his heart to someone else. His sweet heart is out there now, living on in another child who was waiting in need, just like my precious girl is tonight.

I just keep thinking of all the heartbreaks and all the miracles, living together in our big, messy lifetimes. And of how there are people all over the world who are selfless and brave, and over and over, doing the impossible.