It was a pretty good week for Avery up until last night. The build-up in her chest isn’t clearing as quickly and steadily as the doctors hoped. While she seems to breathe well while on her chest, she still has trouble breathing when sitting or lying on her back. She’s going to have another CT scan this afternoon to find out what it is that’s preventing her lungs from expanding fully. There is a short list of probable answers, but the hope is that the scan will tell the doctors for certain. They’ll draw up a plan from there, I suppose.
When Avery was first admitted to the hospital, the dominant emotion I felt was fear. She was very sick and we did not know what was happening to her. The intensity of such an emotion can never last, though, and eventually it gave way to lesser negative feelings as the days passed and we gained some clarity. They were replaced with hope and optimism as she improved. Now I’m exhausted and frustrated. We’re in limbo again.
Avery is awake and can see us. I’m fairly certain she recognizes us by sight and sound. But she can’t really do much of anything else besides squeeze our fingers. Her eyes track us around her bedside. She seems longer and her hair appears thicker. I haven’t seen her smile yet. She’s always been the observant type, so she seems to anticipate when she’s going to have a catheter snaked down her nose. She can’t talk or scream yet, so the best she can manage in the middle of her discomfort is a one-note shriek. It’s not very loud and reminds me of the kind of sound a kitten might make. Lynnette and I offer her words of support but her eyes are so red and puffy. Every time she stares right into my eyes and cries I feel the stinging at the bridge of my nose and I cry too. I don’t even fight it anymore. I’m too tired. We hoped that we could bring her home this weekend, but she hasn’t been moved out of the PICU yet. Today or yesterday Lynnette asked Cole if he remembered Avery and it hit me hard. This is our new normal.
To no one’s surprise, I am sure, my one escape from all of this has been Pokemon Go. We’ve logged in some serious time at Kapolei, Kakaako, and Kapiolani Park. I’ve run into a lot of friends and former students out on that grind and nearly every single one of them has asked about Avery. They’ve given me a hug, offered their support. These are people I rarely – if ever at all – see. Even before Avery got sick, I didn’t get out a lot. It was family first and mostly only. It took a wedding and a housewarming party for me to get together with my best friends this summer. Lynnette and I spent most of our time making sure the kids were cool. But increasingly, that’s what I’ve found adult life to be. I simply assume every one else is dealing with their own version of it. So to be greeted so warmly by all of you stirs ambivalence in me. On one hand, it’s not super-easy to talk about Gravy, to have that conversation over and over. On the other? Quite simply, I feel loved. It sounds horribly corny and it actually pains part (that dark sliver strives for emotional distance at times like this) of me to write it, but I don’t have another word to define it. You’re all following us and pulling for Avery. Social media makes it so easy for us to maintain the appearance of being connected, but over the last two-and-a-half weeks, so many of you have proven that it’s not an illusion, that it’s real. Thanks for that.