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?

September Time Capsule

IMG_4842 We leave Alaska tomorrow. We have more laundry than I thought we owned in clothes, toys are still lodged in the heating vents, I started a fire in the kitchen last night, and the cleaners are coming first thing in the morning. As I sift through the last things we'll give away, I know I won't really know how to feel about this time in our lives until I look back on it many years from now. I know that big change and the making sense of it never come at the same time, even though one of my greatest daily efforts has been striving to make them happen simultaneously.

One summer here, while teaching a few writing classes at the Sitka Fine Arts Camp, my students wrote letters to their future selves for a creative writing time capsule. We collected current newspaper clippings and selfies and recently used doodads and zipped the whole pile up into a neoprene cooler. We buried the bursting thing in the old Russian cemetery under a patch of ferns and a sky of rain gentled by the canopy of 200-year old trees.

FullSizeRender-8I picture making a time capsule this summer and inside are all the words to which I have not yet been able to lend order or priority. Doctors and tests and deaf and Deaf. Patience, gratitude, God, and reason. Trust and landslides, newborn and toddler and patience. Anna. Zaley. Mermaids. Macaroni. When you open it, there is music--a new kind of music, the most wonderful of music, the kind no one has ever been able to hear. I would bury the time capsule down by Indian River where the salmon this time of year are sliding upriver to lay their eggs then die. They are bruised now, red and blue and rising over stones and water in this last, burdened stretch.

FullSizeRender-7It must be true that part of us dies, too, when we give birth. As Luke slipped Zaley's watercolors and some photos from under their magnets on the fridge, I looked at the pictures of me pregnant with Anna and I hurt for that naive fullness, for her life when it was contained and safe and unnamed. I know I will ache for this summer, too, in the same way. How I can walk through the bookstore, like I did yesterday, and people love a tiny baby, and they have no questions, because right now, she looks like every other healthy, normal baby. Her disease and her deafness are such secrets. Next summer, she will be different. There will be cochlear implants and then questions. There will be the other ways her self unveils itself and unwinds from this illness.

I know I'll look back on this summer with a pervading sense of something, like our mystically autonomous memories always ascribe. annaopeneyesAnna's birth is becoming this way to me already--a dream-like, breezeless, yet still vague sensation hovering over those initial hours of her entry. Unlike the 20-some hours of struggle to get Zaley out, my labor with Anna was quick and furious. I was loud. And as soon as I saw her, I knew something was different. The room was candlelit. Her hair was black and slick, matted into waves like doodles done with a felt-tip pen. The sun was coming up just behind the hospital chapel and as my doula brought her upwards, still attached to me, she was quiet. In her fixed black eyes there was a pleading. She did not cry. The nurses brought her to the corner where they coaxed the wails out of her, and I kept asking "Is she ok? Are you sure she's ok?" I wonder now if she was quiet because she was born into quiet. At Lutheran Hospital, they play a song through all the hallway speakers when a baby is born. They were wheeling us up to our room when I heard it. I was so proud. I cried looking down at her. I did not know she had hearing loss but when I heard the song, I thought to myself, I wonder if she can hear that. She was five pounds and she nursed with an urgency. Our room overlooked the mountains and when people visited, they noted a calm. Zaley was with grandparents. I was waiting for Luke to come home from Alaska, but I was through-and-through content. A nurse bathed Anna the next day in my room, in a sink. She made no sound. Her hair was so much darker than I'd pictured in a child of mine. Her eyes found my eyes. We were suspended in a liquid-like peace.

FullSizeRender-10What of these days, this now, now knowing? What will this feel like when it is past tense? I know there will be worry in my memory, but also a deepening that was never here before Anna. This summer's suns and rains, usually three day bursts of each, were of an unusual intensity. We broke a record this week: 4.37 inches of rain on a single day. A friend tells me something about the stars and planets that I don't understand, but the gist is that things are in a state of uncommon flux. While I write, Luke is at the Science Center with Zaley, petting the octopi and counting the colors of coral reefs. Anna is asleep on my chest, and behind me, the sun makes dramatic appearances between clouds that pour intermittent and crescendoing rain. Before me, in this first house we've ever had here to ourselves as a family, is the biggest mess I have ever seen in my life, and I am ignoring it so I can try to keep track of a season that, like all others, will become only a sentence if I let it.

This is the time of year I become most grateful for this place, and I know, a bit shamefully, it's because we are leaving it. This feels like a small betrayal, to leave our other friends to a season of cold monsoons while we get 80-degrees still ahead and then crisp leaves and there is a clear transition to the wearing of scarves, but I cannot help that I love Colorado. I will miss the proximity of everything in Sitka, the geography, the rain-inspired innovation of indoor games, the fresh salmon, the safety, the good, wild-hearted people.

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I will miss my close friend Lisa, who will be moving right after I get here next summer because her husband is in the Coast Guard. The other day, while our kids picked through kelp and crabs and jellies on the beach, I told her I'm worried that at three months (and less than 8 pounds) Anna cannot yet hold up her head. Lisa, who has six kids, doesn't try to explain Anna's differences away with conjecture. She comforts me with the stories of each of her children, the ways they are both different than her expectations, and how each one is the same, in certain ways, as the moment they were born. She brings Anna to sleep by patting her little butt absent-mindedly like a mother who has done this way more than me. Her mothering is so natural and energized, my observations sometimes make me feel like an amateur. She warns about saying yes to the first request of a sleep-over, strictly enforces a daily quiet time so she can read or knit her girls sweaters. She suggests I say a prayer with Zaley every day on the way to her school. As the tide gurgled up the rocky beach, we ate crackers and called to the kids when we lost sight of them behind moss- and barnacle-covered boulders. Lisa says that each child carries within them their mom's sense of hope, that the whole family takes its cue from the mother.

FullSizeRender-9On Saturday evening, at church, the priest presented two ankle-width, white candles to the father and mother of the boys who died in the landslide. I wonder how this mother can have hope, this smiling woman with tears running down her face who somehow buttoned her blazer and got in the car and made the sign of the cross. But then I see that there are other children sitting with her, and I think of what Lisa said, and I look at my girls who are in a state of noticeable deterioration during this one hour of the week I would like them to be good, and I think that if I lost it as much as I wanted to with the choir singing a sad Catholic song from my childhood and the hard rain falling irreverently from the roof, my kids would fall apart even more, too. Hope is not always a given in motherhood--or for any person, really; it comes when our children or families summon.

I must be hopeful. I must not do what I did earlier this week, which is see how early you can spot signs of cerebral palsy (a symptom of congenital cmv) in a child who does not yet lift her head. So instead, I think of a quote I read online from another mother whose daughter has the same condition: "Our kids won't live common lives. They'll live extraordinary ones."

Yesterday, using a hot pink, hand-me-down, Barbie fishing rod, Luke caught Zaley one last salmon in the river. We said our annual goodbyes, talked of how hard it is to leave a place even if staying would be harder. Tomorrow, the plane will cut through the fog and take us back to Denver.

The Sound of Sounds

Because there was enough sun to see the dark blue outline of theFullSizeRender-5 mountain across Sitka Sound this morning, I figured I could handle the google search I've been postponing all summer: "What does it sound like to hear through a cochlear implant?" I'd successfully made sweet potato muffins with a dough-testing three-year-old while talking to an auditory-verbal therapist on speakerphone while nursing while the laundry was going and by the time some friends came over, the muffins had cooled, the muffins had not fallen apart, the baby was asleep, and even though Zaley tried to mount my friend's one year old multiple times, the morning was good. After talking to the therapist, I'd gotten a much better idea of what it will be like to educate Anna. Involved. Difficult. Constant. Different. All words that come to mind when our path as parents of a deaf child comes into clearer view. The therapist's points that stand out are these:

-On average, a deaf adult is on a fourth grade reading level.

-Most deaf adults who have learned how to listen through the auditory-verbal method (and through an assistive device like a hearing aid or a cochlear implant) can read on a level appropriate to their age.

-Cochlear implants do not sound like what we hear. They sound like electronic beeps which the brain then translates into meaning.

-"Being a mom and teaching a deaf child to hear is like being a mom times ten with more focus, intention, and tracking of progress."

-There are 40 lessons I can start with Anna right now.

-The therapist is putting me in touch with a girl who had congenital cmv and is starting her freshman year at Wake Forest this fall.

The last of these makes me have to put down the phone and mute it so I can cry a little bit. This is how I cry lately--in little bursts that rise quickly and then fall away just as fast.

FullSizeRender-4This week I started voluntarily listening to music, enjoying it half-way, through a thick layer of ambivalence. I notice acutely not only music now, but the effects of music: how it imparts levity, how changed I am by it, how it will alter emotions, deepen a mere surface-level feeling. I think of what Anna is missing, but I also think of what Zaley will be missing if I keep her right up against this big, laden lug of my sorrow.

And Zaley is way into dance parties right now. She usually bangs on a plastic tambourine, but when I turned on the iPad a few days ago, I opened up some long-untouched joy for both of us. We have since been playing everything--bluegrass ditties, Beyonce, and Prince. Jason Derulo, Gregorian chants. Anna likes the dancing, too. I hold her straight out from my belly, with one hand under her back and one under her head. Her arms fall to her sides, and when I bounce lightly to the music with Zaley's fingers grasping one of my pant legs, Anna's eyes close slightly in pleasure and her mouth tilts up into the smallest of smiles. Sometimes in a room of pounding beats and motion, she grins till she falls asleep. I have never loved anyone like I love Anna.

Today seemed like the day. So when our friends left, I gathered my courage and looked up what I've been dreading: hearing what Anna will hear when she hears. I chose a youtube that looked like it would be less sentimental, more on the scientific side of things. And this is what I watched. I couldn't tell what the voice was saying on the first three channels of cochlear implant-simulated sound. It sounded like heavy sandpaper sliding across a table, or, even at its clearest, a garbled, deep, Darth Vader-like drone. Once revealed through regular speech, the human voice, perfectly enough, was asking, "What kind of bait do you use to catch salmon?"

FullSizeRender-6But then the music. I think of what my mom said when I first told her that Anna was deaf. She said it took her breath away. And listening to the cochlear implant version of music did that to me today, too. It sounds like 100 stomping feet underwater. It is not a song. It is not beautiful. It is not what I want to give to Anna when we give her the thing we call music. There is rhythm, yes, but when I heard the classical song with my normal hearing ears, the rich and irreplaceable depth of the tones, the high-pitched chiming completely lost by the transmission of the cochlear technology, I promptly fell apart.

I had to sit down. I had Anna asleep in my arms, but Zaley climbed up in my lap, too, staring and silent in the terrible space my tears can create around her. She stroked my hair. She held my hand. She said, "Mommy, don't cry, here let's play with some beads."

After Zaley went to bed, I watched about 20 other simulations of cochlear implant sounds, searching for a voice that sounds human, and looking for the loveliness of a melody. And then I watched this movie about a deaf young woman at Oxford who has cochlear implants, and while the now familiar, tinny and synthetic sound of the implant saddened me, I took great hope in two things: she loves to dance ("it's where she can bring music to life"), and she loves to turn the implant off and be in a "sanctuary of silence" while she's doing sign language with her friends.

FullSizeRenderI am trying to bookend my days with hope, even if sometimes the middles are a little mushy. I know that if I make Anna's suffering too much my own, I may be distorting the great pleasure she will take in life and bring to mine. Tomorrow might be a better day for music. Tonight, we walked home from sushi and there was sun touching the top of Luke's boat in the harbor. I am grateful for the light we still have. For the shape of the mountains against the sky. For the visual splendor this place puts in our life.