Learning to Be Home

IMG_5004 Anna got her hearing aids today. They are “princess pink,” which doesn’t actually do the metallic, muted rose color much justice. The audiologist in Seattle thought they’d look good with brown hair, or strawberry blonde, if Anna’s happens to grow lighter. Around the edges, her hair is beginning to look auburn, like my Irish Grandma Donnelly’s. She is growing in length, but not as much in weight. There is a constant guessing game with her: is she growing enough? Is she changing in the right ways?

We are home now. It is sunny every day, our home has a happiness I didn’t quite remember, or didn’t quite need till now. But I am more overwhelmed than I thought I would be. Anna does not sleep for more than 10 minutes during the day, and those ten minutes are spent in my arms or she wakes immediately. Partly, probably, because she’s three months old and that’s just her. But babies with cmv can also jerk themselves awake more often than normal (sometimes so much that they can’t even nurse), and even in a state of awakeness, they react to a gentle breeze or a small seam in the road with the morrow reflex, their body believing it is falling. I have noticed this far more since being home since we are doing far more driving. The thing with cmv is there is nowhere to turn to for anecdotal consolation–every baby is different, and many are so much more afflicted than Anna, I am afraid to find their stories.

How different this is, being home, than how I imagined September at the beginning of the summer. And how the same. We sit on the porch every night for dinner, Zaley respecting the end of the driveway when she paddles down on her wooden bike, our kind neighbors bringing her birthday gifts and wanting to hold Anna. I tell Luke, “This is what I dream about,” just us, here, the season behind us, our girls peaceful in the pink light of the sunset as it comes between the houses across the street. Most of the time, I think of Anna as Anna right now, looking up at me, faintly smiling and focused in my lap. But then, I look at our calendar, at our three and four doctors appointments a week, and I am stunned at what a month will become. I think of the mother from Fairbanks I talked to in the Seattle airport, whose son was in a reclined wheelchair, his mouth gaping open, his legs twisted, and she said they come down once a month for his treatment even though they have 8 other kids. “You just do it,” she said. She didn’t sound defeated. She sounded ok, really ok. She was smiling. “It just becomes your life.”

I should mention I probably would never have spoken to her if I didn’t have Anna. I probably wouldn’t have even sat nearby.

IMG_5005-2It is more different here than ever, having returned home with the reality of Anna’s diagnosis. Alaska, in ways I only realize now, made her diagnosis easier to bear. I see Alaska with such a temporariness, I think I sub-consciously thought of Anna’s condition as temporary. Here, the permanence is so much more apparent. What do we do with all the baby toys I saved that play music when you push a button? With the lullaby CD I left on her dresser for our return?

In Alaska, there was the oft-repeated, “We’ll figure it out when we get home.” But now we are home, and there’s so much to figure out, I’m not sure where to start. There is paperwork to be mailed out, there is insurance to call to change our pharmacy, there are early interventionists calling to schedule home visits, there is a 3 year old who starts school tomorrow and needs 100 Dixie cups, 2 sets of washable markers, and 20 other things on a school supply list I failed to bring to Target when I went earlier this week. And then there are the general household things that would be difficult even without a child who qualifies for the state’s disability services. There was another woman I saw in the Sitka hospital who had four children, one of the middle ones in a wheelchair, and she was smiling, and all of the kids were touching either her or the wheelchair as they came down the hallway. How beautiful they were, how complicated her life must be, how she was beaming.

Zaley is into “collections” right now–piling up any number of things she sees and can hold. Seashells, wood chips, large crumbs, leaves. It occurs to me I am in the habit of collecting mothers of kids with special needs.

IMG_4932We have been eating elk steak salads with Swiss chard from the garden. It is so lovely and sturdy, how it came up while we were gone, red-spined and with fat leaves that shine a silver-white in the sun. Zaley likes to come outside and help me pick chard while I hold Anna over my shoulder. Her hearing aids emit a squealing when they’re loose, and during dinner tonight, I kept having to push the left one back into her ear to get rid of the feedback. She’s wearing the hearing aids mostly to prove to insurance and the FDA that hearing aids do not bring her closer to hearing, but that cochlear implants will.

Tonight, even the readjusting of Anna’s hearing aids feels like too much to do. Not because I don’t want to give her what she needs, but because it feels superfluous, this one extra task, these buzzing apparatuses hanging from her perfect and pointless ears. I kept asking the audiologist today, “But she won’t hear, right?” And, “Even if the hearing aids are turned really loud, even if they stimulate the auditory nerve, will she ever hear it?” But the answer is no. It is still no. It will always be no. If I need to repeat this, I figure I am still not ready to accept it.

Zaley and her cousin Clara danced in the middle of the family room after dinner tonight. They slapped the ground and tumbled down and spun and their little girl silly joy filled the room with both a lightness and a heaviness for me. I cannot help but picture Anna spinning next to them and wonder how dance will be different for her, how all of this will be different for her. My hours are filled with small prayers: God, let her experience this. And this, too. Oh, and this one thing, especially, too.

Zaley’s uniform is tumbling in the dryer. Anna’s hearing aids are turned off and zipped into their case for the night. This is the last night my girls will be this young, this my own. Can you miss something even as it is happening?