Readying the Heart

IMG_7385These days, I have to run from everything in order to write. My mom came over this morning and is watching the baby. There is laundry everywhere--on chairs, under chairs, at the top of the stairs, at the bottom of the stairs, in random bags, and erupting from drawers. Zaley is at school handing out Valentines and eating heart-shaped pretzels. I have so much freedom for the next hour, I feel anxious and unfocused, like my heart is going too fast. It is the first morning since Anna was born that I have left the house to write anything. Usually, I fit words in late at night with her rasping beside me. I have to watch my judgments; when I read, I think, surely, this person couldn't have written this/done this/made this while raising young children. But, in fact, people do. In fact, here I am writing. I might look like I don't have kids. People with kids look at me like I look at people who don't seem to have kids. I have a leather bag with me this morning instead of a diaper bag. My hair is washed. I am not whisper-shouting at my daughter, like the woman in front of me just was at the coffee shop, "You cannot talk that loud in here!!!"

I had to leave the coffee shop. It is my favorite coffee shop: a bookstore and a bar and a coffeeshop in one. There are beautiful books tented open on shelves and glossy Dewey Decimel cabinets used as half-walls. It is so lovely in there, with Louis Armstrong crooning above me from a ceiling of rafters and steel, and pigtailed toddlers peering in at pink cookies, and a smiling older man settling in with his tea. I was there when they opened and gone five minutes later. Annie Dillard explains it: "Appealing workplaces are to be avoided. One wants a room with no view, so imagination can meet memory in the dark."

I find my memory is most often meeting my imagination in the place before I had kids. That mysterious me, only half--or less--of who I am now. One hundred times the freedom, but such aimlessness, no use for space or freedom. Better body, less purpose. My friend Lizzy put it so profoundly--the feeling you have as a mother that makes everything slice you open to a deeper degree than if you were just feeling it for yourself. She said that having her daughter made her feel like "the wind wasn't just the wind anymore."

Now I am at the old library down the street. It is not as unappealing as Annie Dillard would prescribe, but less boastful in its presentations than the BookBar. There are peeling French windows here and historical books laid out on a bench. Out the window, winter still hangs over the sunny field, the trees pushing against the wind. The pond is still ice. The windows rattle slightly when the air changes its force and direction.

But this week feels like a moving forward, which I haven't felt for weeks after so many illnesses in our house and an overnight stay in the hospital with Anna and big snows and chickens for whom we had to shovel a path--a one-foot-wide muddy trail from their wooden house up to our steps where we feed them corn in ceramic cereal bowls.

IMG_7508The last couple of months I have tried to ignore a stuckness, but now that we finally have a surgery date for Anna, I can see that spring will arrive, as it always does, no matter how much an unlikelihood this always seems in January and some of February and even into March. We scheduled her cochlear implant surgery for April 20. It should take 2 and a half hours and they'll do both sides at once. Before that, we will go to the desert where we went when I was pregnant with her where the mountains are made of brown dust and the mornings are hot and the wind pulls across the pool in straight white lines. Memory and imagination, that old me and this new me, that bump in my swimsuit and Anna now, and Anna now and Anna future, and her deafness still deafness, but a deafness opened up.

FullSizeRender-3I want this surgery behind us so I can stop imagining life after it and just live it. I want the surgery over with so I don't have to picture the doctor coming out to tell us if it was successful. I want to know what Anna will be like when we activate the devices ten days later and her brain is ignited by everything I hear but forget to notice or name: the geese honking outside as they bisect the window and settle onto the honey-colored grass, the door clicking shut and the kids scuttling in, the man behind me talking about a conspiracy, the copy machine scooting sideways and spitting out paper.

I am so excited for Anna to hear all of this, but so scared still that we are puncturing the peace of her world. I know that I will always have more of a desire to understand her way of being than I can ever possibly fulfill. This is probably one of the hardest and most beautiful things about having a child who is different.

It is Lent now and it feels like it. There is an extra layer of heavy over everything, even though I can also feel the blood-pump of momentum this time of year. It is a windy day, but the wind is not just the wind. It has a pitch I never noticed till Anna. The breeze comes and goes like a revelation just out of reach. There is a prayer running through me, the morning prayer from yesterday's hours, Psalm 57:

"My heart is ready, O God, my heart is ready."

The Great Language Debate

FullSizeRender-1I recently read that the stress levels of mothers to kids with special needs are equivalent to the stress levels of combat soldiers. Some days, this does feel like a battle. Not so much because I feel downtrodden physically, but because I feel caught between two warring sides: in the deaf world, the spoken language team versus the sign language team. Obviously, because we are getting cochlear implants for Anna, our goal is for her to speak and to hear speech. Easier said than done. Already, we spend multiple hours a week preparing her for the hearing world. At our auditory verbal therapist's office, we practice the ways we need to be emitting animal sounds in order for Anna to learn them in a more intentional way than a hearing child would. The bunny says "hop hop hop" so Anna is attuned to the three-part building block of a sentence. The boat says "puh-puh-puh" so that eventually, when Anna is in the tub, she learns to get her lips around the "p" sound by blowing a boat across the bath.

But does she hear anything? This is the question that I ask myself a hundred times a day. Nancy, our AV therapist, swears she does. She sits across the table from Anna, lovingly scrutinizing her vision, the slightest turn of her neck. She holds Anna, studying the silence of her eyes as I call her name loudly and lowly behind her back. It is rare for babies to have Anna's level of hearing loss. Not only is she profoundly deaf, she is at the farthest reaches of profound.

Last week, I sat in the sound booth at Children's Hospital with Anna in my lap and my ears plugged with orange foam as our audiologist pumped "uh oh's" into the room along with clicking noises and bells jacked up to the decibel level of a garbage disposal. But because Anna is a baby and because babies' eyes and noises and movements are random, no one knows if she is hearing anything. Our audiologist's eyebrows go up behind the glass window? Do I think she heard something? Maybe! Or, that time? Maybe not. My subjective expertise sometimes feels like a guessing game. Sometimes it feels like a burden.

Part of me thinks that we are being fooled. But even that part of me is divided. We are either being fooled by:

a) The professionals who tell us Anna is hearing (maybe just so we keep up hope and keep talking to her)


b) Anna herself (maybe she can hear more than she's letting us know)

One time, Nancy rang a tamborine of jingle bells behind the baby's head and Anna went totally still. I stopped all movement in my hands. Anna's eyes looked left then right. I know she heard something that one time. But I don't know about all the others--all the times we have said "moooooo" or "Annnnnnna" or "Mamaaaaa" or "Daddaaaaa."

I suppose it doesn't matter. If she were hearing us, even just a little bit, would it change anything? She is still deaf enough to need cochlear implants. She is still deaf enough that I am up in the middle of the night thinking about her fitting in at school one day. I guess if I knew she were hearing something, she would seem just a little bit less removed from me.

I know that even if she hears nothing right now, a large part of our AV therapy is preparing us for the ways we will have to be intentional with our sounds once Anna's cochlear implants are activated--which, if insurance allows us a 10-month surgery date, is just three months away. Instead of going upstairs to get something, we say "up Up UP we are going UP!" Instead of stirring the soup, we say "whoosh Whoosh WHOOSH, hear us STIRRING the soup?" Some days, this is exhausting. Some days, I wish I were more of a thespian or a hockey announcer.

Because we can't really know if she's hearing anything, or something, or lots of things through her hearing aids, she's supposed to wear them "all waking hours." Have you ever seen a seven-month old who is aware that something is jammed in both of her ears? Something that is colorful and removable and chewy? She can get those suckers out within the first second I put them in. This is what every mother of a child with hearing loss is dealing with.

Every mother except for the ones that decide not to use technology to change the way their child's brain develops.

Enter: the sign language team. Without hearing aids and without cochlear implants, a child obviously needs a language. The Rocky Mountain Deaf School here teaches almost all of their classes from K-to-12 in American Sign Language. Kids can have cochlear implants at RMDS, but they're expected to use ASL as their primary language and speech as their second. The school (constructed using a 13 million dollar grant from the Colorado Department of Education in 2014) is amazing--with hallways built three times as wide as a normal school so students can sign to each other side-by-side on the way to class. Instead of installing typical floors that don't bend, the hallways in the deaf school are built bouncy so you can feel a person approaching from behind.

FullSizeRender-38We participate in a monthly program led by the deaf school. Sometimes it's at the school. Other times it's at museums or organizations around Denver, with activities tailored around deaf children. Seeing the way people adjust their activities for these tiny people with tiny hearing aids always brings me to tears. We have met deaf adults who possess a happy kind of confidence and eager senses of humor and who produce this warm bubble of welcoming despite the fact that they can neither hear us nor can we understand their language. We have met parents in this group whose kids have cochlear implants and parents who are deaf and have deaf children who will not have cochlear implants because they already live in the Deaf world. I believe that the Deaf world would be a beautiful place to live. A place of of sensory sensitivity. A place of connectedness and community.

But I don't live there and I never will. I want Anna to have the choice to be in that group when she's older and not wearing her hardware. My sister-in-law, Annie, put well what I feel about not teaching Anna sign language: "Wouldn't you feel vulnerable if, when someone took your device off, you had no way of communicating?"

But Nancy put it well, too: "You have to think about your intentions. You have to think about the way her brain is developing."

So I started thinking about intentions. My intention is to learn sign language so that I can speak to people I admire in this new world we find ourselves in. My intention is to give Anna the option to speak with her hands or with her voice. My intention is fully based on my preferences and my preferences are based on loving language and appreciating well-roundedness and avoiding exclusion at all costs. My preferences have nothing to do with research or brain development and Nancy pretty much wrote the national and international guidelines on getting deaf children to speak. Our audiologist said of all the AV therapists they work with at the cochlear implant center, Nancy can get kids who were never expected to speak speaking perfectly clearly.

At her office last week, I met a boy named Eli who is 13, whose first language is Russian, who is also fluent in English, who is learning German, who is profoundly deaf. Behind his curly hair are hidden two hair-colored cochlear implants.

This is how I want Anna to be: both like me and more than me.

Nancy says that when you give a visual cue (sign language) to a deaf child, their brain believes that it should gather its information from vision first and foremost. But in a deaf child who will learn to speak through hearing technology, the brain must be taught to develop through sound first. Animal noises have an order of operations: first, you make the "moo," then you show the cow. Simultaneity is not lauded in the auditory verbal world, and for good reason, it seems.

But good reason doesn't usually dictate my decisions. This is where it gets sticky: my heart loves sign language and the solidarity it shows to both Anna and her deaf contemporaries; my head says, give her a voice first and add any language she wants later.

But later feels too late.

I realize I have said "but" about ten times in this post. This is how it is.

FullSizeRender-36If Anna doesn't speak till she's two-and-a-half or three (her language will likely be at least a year behind a hearing child's, since she'll hear a year later), what language do we rely on in the meantime? I don't want to be talking and talking and talking to Anna and not give her the opportunity to respond. Already, she seems to be trying to raise her thumb to her chin to signal "mama." (Which makes me feel like doing a cheerleading split-leap and chanting V-I-C-T-O-R-Y!) And, we all know from the baby books every American, over-achieving mother has read about our hearing children that babies who speak sign language at an early age (hearing or deaf) have a more adept language center in their brain than those who don't.

Add into the mix a close friend of mine's cousin, Natalie, who sat on my couch for three hours last week to talk about sign language and spoken language, who speaks both languages fluently, who has a magnet behind one deaf ear, who is finishing her doctorate work in deaf education, who has one of the most robust resumes I've ever seen in working with deaf children, who is a sign language interpreter and an early interventionist with training in auditory verbal therapy, who says "do all the things" and who also said, when I asked her about the research behind sign language doing detriment to spoken language: "working on my thesis has ruined me on research. You can pretty much find anything you want to believe when you look at 'research.' "

Well, shit.

If you can't look at research, can you look at people's experiences? Maybe one day, you could have, but now it feels like we have access to too many people's experiences for us to gather an adequate portfolio of what we want our own (or our own child's) experience to be like. I know that I can't make a Pinterest board for our future, and I definitely can't make one for the future of my child. Still, I have no prior experience with deafness, so it's hard to resist compiling the stories of others to assist in mapping our own.

In a recent Slate article, a born-deaf woman with cochlear implants talks about how each monthly MAPing process (which is when the audiologist programs the implant's levels according to what the brain is picking up) physically hurts her. When the audiologist changes the program, the deaf brain carves new neural pathways, and this internal etching can be painful. I picture it like a pencil grooving its way into soft tissue. As soon as I picture this, it's as though I feel a sympathy MAPing--a mental etching altering my own pathways, not without pain, as I envision the struggles of my child.

I had to stop reading recent posts on the Parents of Children with Cochlear Implants Facebook page because parents  have been writing in about their cochlear implanted one-year-olds banging their heads on the floor in frustration and/or pain after being activated. There are also countless wonderful videos of deaf kids' activation days, but what you should know, if you've ever watched one of those, is that the journey for the parent of a deaf child is far more complicated than the joy and triumph that are (only sometimes) revealed in that room you enter for a few minutes on YouTube.

FullSizeRender-37I assume I will not have an answer to the language question for many years. In the meantime, we love our auditory verbal therapist, Nancy, and we love our sign language teacher, Lori, and we love our daughter, Zaley, who loves helping with both auditory verbal cues and with sign language, and we love our daughter, Anna, whom we would love to talk to one day. Yes, I fear that implanting Anna will bring pain to her life. But I also know that not preparing her for our world adequately would make her life harder. It is a weight, as a parent, to know that our world must be the world of our children, even if they are different. Even if their world, a world built just for them--bouncy floors and all--might be a better place to live.

Moving Towards Hearing

IMG_6719It is calm here. The OT and the early interventionist have come and gone. The stomach flu has come and gone. Zaley returned to school today. Anna tried some avocado this morning and is sleeping face-down in the sun. As much as I love Christmas, I feel a relief that the holidays are over and we can find our place in the day-to-day, organize our closets, resume appointments, spend mornings seeing how the girls have changed--Zaley's new signs ("I'm excited!" "I see snakes and stars and monkeys!"), Anna's new positions (sitting all the way up without assistance!), the tiny refresher of a new chair behind the new desk where I sit now, thinking of a new year. Which means thinking a lot about last year. I pretty much missed last winter, I was so sick while pregnant with Anna. This time last year, I could barely move from the couch. I pictured Anna as a boy. I never pictured having a child missing one of her senses. "Missing" doesn't feel like the right word. Sometimes "deaf" doesn't either. It's like there's a word here I don't know, a different way of being that does not imply a lacking. I am constantly wondering what it is like to see from Anna's eyes. All these peering faces. All these colors flashing through plastic. What does it feel like to laugh and not hear it? What does she think we are doing with our mouths as we move them slowly and snap our tongues against our teeth?

Like any revelation, Anna was unforeseeable in every way. She still is--even the impending color of her hair a great wonder to me. Some days now, it looks blonde around the edges. The lower layer in the back (the remaining tuft below male-pattern baldness) is a dark black like when she was born. Around her temples, the burnt sienna of both Luke and my grandmas' juice-cylinder curls.

FullSizeRender(6)How I wish my girls could have met my mom's mom and Luke's mom's mom--women who raised five and seven children, women who bore noticeable mirth, who were equal parts gentle and strong, who stayed home because there was no other choice, who did this, who did it so many more times than me with no Swiffers or baby monitors or Bumpos, who suffered the same trials of toddlers, and who discovered the daily astonishments of a small human blooming. I think of how lucky for me to have Anna this year instead of ten or 50 years ago--how now, so much is possible for her. Her diagnosis happened; medication came in the mail; normal speech is possible; hearing is available! When I think of last year, I think of the rawness and grief of discovering her condition, and now, here I sit, much more full of curiosity than misgiving as we push into this next half-year of her life, when our deaf child will be able to hear.

I think about cochlear implants all the time. Their power, the way they will map her brain, the way they will map mine. How we have to make this decision without consent from the person they will most effect. What it will be like in her head, to be opened up by sound. She will discover she has a voice, that I have been singing to her, that our mouths emit something like invisible objects. How do you describe sound without reference to sound? The air dances. Music shifts the blood. A warning comes by way of ascending and descending vibrations. Sound is like an escalator you're on but cannot see. You feel the lift and the drop, something in you moves without moving.

For Anna, it will be almost as it was for me this week: I got an underwater ipod from Luke's mom for Christmas. As I slid into the shallow end and started pushing through the water, the presence of sound in the pool, though I'd pictured it many times, still struck me as entirely foreign. It felt out of place at first. I've been holding off on getting underwater music for some time because I felt it would take away the natural sounds of swimming: the whoosh of the water as it gets heaved towards my feet, the echoes of voices bouncing off the tile walls. But I've been less motivated in the water than I've wanted to be, so I gave in.

Almost immediately, the sound lit up my limbs. I swam differently--faster and with more charge. My shoulders blushed from the pace. I had loaded the ipod with classy choices: Justin Timberlake, Rihanna, Zac Brown. I knew they would make me speed. My head buzzed. I thought of Anna's implants again--the ones that will be fully waterproof and equipped with a remote I can hold so she can hear my voice across the crowded pool as though I'm right against her ear. It will not be her natural state of being, and for this, I will probably always feel the same ambivalence (a little guilt, a little joy) I feel when I press the play button before I swim. I guess I hope that giving her sound will not be dampening the feel of water or the taste of chlorine. That she can choose not to push play when she wants to retreat to her innate, fully sensory silence. That in addition to the mysterious ways we're born, we must seek means to arrive at the nuances that turn our lives. I hope that my exhilaration will eventually be hers.

IMG_6639(1)In Jumpa Lahiri's December 2015 piece in The New Yorker on learning Italian, she writes that at first, her endeavor to learn a new language took place "in exile, in a state of separation." Maybe this is how I first felt about Anna--that her deafness exiled me from understanding her. If I could talk to the 2015 version of myself who was scared about having a deaf child, I would say that Anna's deafness has been one of this year's greatest gifts, for it is through an exile that we find a much more realized and hard-earned arrival at a once-unknown destination. On Wednesdays now, our deaf friend Lori arrives with a book and her fast-moving hands. I make tea. I make the signs for "do you want some tea?" We are learning our daughter's language. This spring, she will learn ours.