Humming, Denver, Thunder

I am writing less because there is no time. By the time there is time, Luke and I are so tired, we watch an Impractical Jokers and I sit in bed laughing like an idiot while he snores and the baby rustles beside me as I'm shaking. FullSizeRender-25This week is our "intensive" week for Anna's Anat Baniel therapy, meaning she is seeing a practitioner once, sometimes twice, a day. The one we see in Denver is an exceptionally kind man named Andrew who brings his rescue dog, Mary Jane, to work with him, and who said he'd heard of the Anat Baniel method 15 years ago when he stepped off a fishing boat in Kodiak, Alaska, to take a phone call from his trombonist brother who told him about ABM, and Andrew immediately thought, "that's the most humane thing I've ever heard." Andrew exhibits a gentleness you do not encounter in the everyday. He knows that Anna cannot hear him. But he hums to her. He is big on humming. I know Anna can feel/hear humming because when she's asleep, it wakes her, and if she's sleepy, my humming turns her eyes three-quarters closed.

My mom recently told me that while it was once thought that giraffes do not communicate with each other, it has recently been discovered that they hum to each other at night.

IMG_5629-2I had a half an hour between Anna's first ABM session of the day and her four-month pediatrician visit to go for a walk, so I strapped her to my chest and walked around our old neighborhood. We'd bought our first house in Sunnyside in 2011 right before the housing market boom and before the Highlands/LoHi neighborhoods exploded into their current level of crowded development. Now, there are trendy food court-style restaurants with bleachers overlooking downtown and multiple places with &'s in their names and, where I walked, a place selling custom flannel shirts (custom flannel??) next to a place where you can drink kombucha and make your own bike out of bamboo.

I looked in the windows. I grew confused. Who does these things? Where are the regular bikes, the everyman flannels, the good old, cow town, down-home people? We moved to Wheat Ridge partially to find them (and because my husband's good sense fortunately won over my tendency to partake in whatever the current culture offers us). Now that we have our distance, I see that Denver has sprouted such a culture of luxury, on days like today, I feel like a stranger in my own home city.

Even more than the place itself changing, maybe Denver has changed to me because of Anna. When you have a child who demands not only your every penny but your every hour--in doctors' appointments and in the practical application of auditory-verbal strategies and in the almost constant adjusting of hearing aids, you realize how little shirts and bikes and the most innovative way to top a burger matter. Part of me has become less judgmental because of Anna ("Be kind, for everyone you meet is facing a great battle"), but part of me has become more judgmental, as in, who has the time and money for all this urban-bound, fancy nothingness? I love me some material things, but now I feel so less tempted by them, or that they they are so much more obviously excessive, that they feel almost offensive.

Granted, this is a conclusion I have come to because we have $10,000 in medical bills. Give me that money back and a perfectly healthy second child, and I would probably be singing a different tune. We might have gone on a date to a food court-style restaurant and looked over the city and thought everything is as it should be. Now, though, I am stronger in my seeing that this place is not what it should be. And I think I see that more clearly now than ever because now I actually want Anna as she is.

When I picture her with her hearing, I am not picturing Anna. When I picture her without all these new doctors and therapists, I picture our life void of the patience and listening/cueing/mothering skills they are teaching me. When I picture our life without Anna, I picture something that verges on complacency.

IMG_5468Still, I am struggling to adjust to how much time must be devoted to a child who has both deafness and congenital cmv. Sometimes, we are so swamped dealing with one diagnosis that we forget about the other. We have been so focused on her hearing loss, that last night, I read a bunch of stories online about cmv just to reintegrate myself into the reality of what we are facing. I forget how much we still don't know. I forget that part of my stress is my not knowing. I feel that this not knowing is failing to serve Anna in a preventative sort of way. I feel that because she cannot hear me say I love you, she does not know how deeply I mean it. I feel that one of the hardest parts of all of this is that Zaley needs more time than I have to give her, and if I could, I would take a day-long bath with her, just to feel her hands slow in my hair again, to forget about the color-coded calendar, to hear her voice without urgency as it travels through the magical levels of her nonsense songs, its tenderness as clear as the bubbles. When people ask me how I'm doing, I say I'm doing ok, but there are hours when I feel I'm a pressure cooker that needs its lid lifted and no one knows how to do that, including myself.

I felt so anxious this week that Luke forced me to go swimming, and in those back-and-forths--my first laps since I had Anna--I found that re-entering my own body brought me back to the bodies of my girls with less burden. I often feel that we're so busy, I haven't had an hour to just sit in the wounds of what we are experiencing. Like: this Sunday, when Luke sang alone in the church and his voice rose up to the domed ceiling, I realized, with a start, that Anna has not ever heard her father sing.

Tonight, the thunder was loud enough at first to be mistaken for terrorism. This is the kind of storm we never have in Alaska--the kind that can be measured by its sound and distance. I love to listen to the falling away of the rain. The hallway flashes white and I count in my head, two seconds...three seconds, before the windows above my bed shudder from the soft fists of thunder. Anna sleeps motionless next to me. For now, at least, there is peace.