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.


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.

Learning from Slugs

We go home on September 15. This will be the latest I've ever stayed in Alaska. In my head, we will go home to 90 degree days and it will feel like mid-August: mornings will be pleasantly hot and pools will be open and the ice cream truck's creepy song will chime through the neighborhood at 2. September is good in its moderate way and for me it means our family is finally in the home we own in the place we have all chosen together. But I dream of August, knowing that we are missing it. FullSizeRender-32Like any fisherman's wife, I imagine our lives without fishing. If we weren't fishing, we could be camping. If we weren't fishing, we could pull the Swiss chard and peppers that grew huge this summer at home, the renters sending me proud pictures of the raised bed in our backyard. In the August in my head, I am wallpapering the baby's room now that we know she's a girl, and penciling sign language letters on the walls. As shallow as it sounds, August is the back-to-school time to hit up Target with well-reasoned abandon, and online just doesn't cut it. Zaley starts preschool the week we get back and I'm hoping there are enough uniform shorts left at Old Navy this late in the year that she won't look different than the kids who started on time.

I know that Alaska brings such beauty into our lives, I would mourn the loss of it if we didn't come here. And I also know that almost all of the things I miss (besides family and friends) are creature comforts and if we weren't fishing, well, we wouldn't be us. But still. The inner child in me wants what's mine, and sometimes, nothing here feels like it is.

Alaska is not easy. I spent this past week waiting. We ran out of Anna's medication on Monday--the anti-viral that stops the progression of vision impairment and other neurological delays. FullSizeRender-25Every time she cried, I wondered if it was something worse than usual, my over-active imagination conjuring microscopic versions of a spindly virus branching into the blood stream. Days went by. Anna cried out in the night as though startled, which she has never done. The slight rash on the bridge of her nose took on a deeper red hue. Profanity was used in reference to Accredo Pharmacy, where Anthem Blue Cross is making us order our medications. The woman on the phone from Children's Hospital Denver says, "Oh. You have the worst possible insurance for her condition. Parents with Anthem have switched even when they've almost reached their out-of-pocket maximum because Anthem is almost impossible to deal with." A 25-day supply of her Valganciclovir has a $900 copay. Let it be known: do not buy the Blue Cross Blue Shield Independent PPO.

At home, we could have driven to Walgreens the same day and picked up her medication. Here, the meds got sent to Anchorage (not close to Sitka at all), then stopped for 48 hours by airport security. I called Ted Stevens International Airport in Anchorage and, in true Alaska fashion, their phone number didn't work. When I called the specialty pharmacy who shipped it and UPS, they both transferred me to "Alaska-specific departments" because it's so hard to get things to us here. Meaning, it's easy for things to get lost.

Which is how I feel here on so many days. This place, since day one, has posited in me a profound sense of longing. And that longing is not just for home. It's a longing that sits, that has no proper goal at its end. It's a longing for everything and nothing, to be here forever and be here no longer. It is a longing for childhood and for future, for escape and for safety. Like the longing you feel at a music concert, in the midst of great beauty. A nameless thing. A gnawing. The longing of displacement, of no everyday belonging.

Problem is: my home is with my family, and my family is here.

FullSizeRender-31Today, when the raindrops are big and the wind is turning the leaves sideways, I keep thinking about a hike I took with five scientists about five years ago on an even more remote neighboring island. We ended up on top of a mountain just as a storm was stacking up against the ridge line. No one spoke up there. Everyone's hair was starting to piece and go wild in the wind. It was the most beautiful place I have ever been. Above the tundra line, Southeast Alaska spread before us in a collage of greens: jagged emerald islands cut through by teal streams, white snow drifts radiating with the magical blue given by glacial ice. It turned cold and the clouds began to leak. People rustled in their bags for waterproof layers. And we all sat there wondering when someone was going to say, "It's time to go home."

FullSizeRender-33This is something I cannot say no matter how bad the summertime gets. Luke says this year's fishing has been the worst he's seen--both the weather and the yield. I know this is the most difficult summer I've ever been through up here, and here we are, staying till the end. We only have a little more than two weeks left and today I feel like giving in. An airplane takes off and crosses the seven front windows on this house (warmed today by the heat since it's 48 degrees), and a big part of me wishes I were up there, closing my eyes in sunny relief when we finally lift above the fog.

On that hike five years ago, one of the scientists eventually did sFullSizeRender-29ay we should turn back and begin our 6-hour trek back to the cabin. He explained the Abilene Complex: how sometimes, when there's a group of people, each person depends on someone else to verbalize when the group has reached their limit. When no one speaks, the group keeps going, moves beyond their boundaries, encounters dangers. I can wager a lot of fishing families have an Abilene Complex, especially the closer they get to September. I do not need to tell Luke it's time to go home. He feels it, too.

We find things to do. We beg big duck eggs from a yard-tending neighbor. We suit up and walk, no matter the weather. We find the sign language alphabet on an almost forgotten playground. We build puzzle after puzzle. We even bring them to the brewery when Luke gets in and we only have energy for food-truck dinner.

And yesterday, Zaley and I entered a slug into Sitka's very own Slug Race. Ours was a short, fat slug that didn't move a millimeter. The quicker ones stretched their lengths out long, then waited for the rest of their bodies to catch up at a pace that was painful to watch. Slugs are deliberate things. They move towards what they want by way of rhythmic muscle contractions. They thrive in wetnes, hide when it's dry. They have light-sensing feelers and smaller nodes that pick up smell. They are hard to hold onto. And get this: slugs are deaf.

FullSizeRender-34While we were cheering for ours, a friend with two daughters spotted us, so we turned our attention away from the race and talked while Zaley jumped from rock to rock with the boats of A and B harbor bobbing in the background behind her. Because her husband is in the Coast Guard, my friend won't find out till next spring where they'll have to move to in early summer. I asked her if it bothers her not to know in advance where their lives will be spent. "I don't like to think too far ahead anyways," she said. "Makes my feet feel like they aren't under me." I like this advice and this image, since I often try to ground myself by putting my head too far ahead--I'm already thinking about Anna's first day of school three or four years from now, the differences she'll encounter beyond the look of clothes bought online or in-store.

Our slug didn't win. I don't even know whose did, so inept am I at attending to slowness. I've never liked waiting because waiting makes it feel like time isn't my own. But as I see Zaley grow--in bangs and in language and in overall being--I see that time can't possibly belong to me. If I were more like my friend, I'd stop thinking about waiting, and then I'd just be living. I recently reread a line by Ellen Gilchrist, one of my favorite writers, whose wisdom comes from writing as a grandmother looking at the mothers of today, and she writes: "In the end happiness is always a balance. I hope the young women of our fortunate world find ways to balance their lives. I hope they learn to rejoice and wait."

FullSizeRender-28 FullSizeRender-27Rejoice and wait, I think today, as Zaley is pushing a mini grocery cart through the store, excited about something in every aisle. People stop for her and they smile and they wait, even though her cart is so piled with her choices, she can barely keep the wheels going straight. I wait for her even though I have to pee and the baby is on the verge of screaming. In the car, she is victorious with her goods: a bucket of cashews, new lipgloss, a box of Lucky Charms. She looks out the window and says, "Mom. I like this rain."