The Thing Anna Already Is

IMG_8723The first time I felt the permanence of Anna's cochlear implants--of Anna's deafness, maybe--was when the nurse called my cell phone in the middle of her cochlear implant surgery to update us. We were in the surgery waiting room. Luke was eating a breakfast sandwich and I was looking up at the screen that looks like the Departures and Arrivals screen in the airport. A.W.: Procedure In Progress, the line said. I must have looked at that line 200 times--each time, picturing Anna's body limp on the gurney, and each time, wishing the line would switch to In Recovery and I could push my head against the side of hers, warm and pulsing and the doctor saying he was done. When I answered the phone in the waiting room, the nurse said, "Dr. Kelsall wanted me to tell you he has completed the left ear. He's closing it up. Then we'll begin the right." IMG_8731At that moment, I felt this wave in the brain: elation, gratitude, mostly relief that her anatomy could support this apparatus we have hoped for and anticipated. But also, if I thought deeply enough and if I continue to think deeply enough--below the sweet reprieve of a successful procedure and below the thanking God for adept professionals and below the tingle of energy that comes with any step towards transformation--I also felt a kind of settling I didn't expect. I can't describe it. It felt like sand being poured into my core, and all those granules landing in the last place they would ever land. I don't want to call it disappointment, I want to call it acceptance. But not the end-of-yoga-class, melty, at-ease kind of acceptance. The kind that said to me: this is for real, this is the way it will always be. We just put a device inside our daughter's head that will remain there for the rest of her life. If she weren't completely deaf, she is now. And if she ever does want to hear, we will be dependent on technology for her to be able to do it.

IMG_8763I guess I consider myself a bit of a Ludite. I think that, more often than not, technology makes us less humane. I feel this way because I can feel it happening to me. I feel the pull of my iPhone away from the four walls around a moment; I feel the temptation of Facebook away from my in-the-flesh friends; I feel the compulsion to photograph any moment that is beautiful or funny or places my life in its best light. Not only is it a blessing when I forget my phone at home because then I can just watch my kids, the absence of my phone reminds me how to take joy in. Zaley went through a brief phase where she didn't want to be photographed. I could see that she didn't have any problem with being caught onscreen; she simply didn't want to be stopped. She knows what I have to be reminded of: that living through the devices around me usually removes me from my sensory experience of the world.

How is it, then, that a person like me can believe that a new technological invention (cochlear implants) will make my other daughter the person she might one day want to be?

IMG_8727Because I am making a very intentional exception, I believe. Because my sensory experience of the world is absolutely dependent on sound. Because my daughter had absolutely no access to sound. Because cochlear implants will, in their own way, give it back to her. I like to picture it like this: in today's world, we usually receive music by way of technology as opposed to in-person. We don't sit in concert halls each night of the week. In our house, there is always singing, but there is also the radio and the computer and CD's. It would be hard to find a person who contends that the radio and the record industry have ruined humanity. (Far harder to find than someone who'd say the same of the smartphone). If I think of cochlear implants as Anna's little internal radios, I feel more certain that this technology will not make her less humane. I feel that--like the presence of music in mine--the presence of sound might improve the quality of her life.

Still, one of the hardest things about watching Anna suffer and recover this week is that this surgery was optional. As in: not medically necessary. As in: I chose this. While I held her moaning in the recovery room, her IV-punctured hand wrapped up in a mitt of gauze and her head encircled with blood-spotted pads, I asked her silently for forgiveness for putting her through this surgery so she can be like me.

IMG_8755The day before her surgery, Luke and I walked around our neighborhood and talked about her operation. For the first time since we'd had Anna, Luke said that he wasn't excited about surgery, that to him, it summoned some sadness. Sadness about what it meant--that Anna's deafness and our ability to hear have created an obligation for us to make her life easier (or less isolated, or more full of potential, or whatever other phrase you want to insert here that doesn't quite articulate the love-filled yet gaping divide a hearing parent tries to leap over to reach their deaf child). I agreed. There is a sadness surrounding this week, especially because we haven't yet turned on her implants, so our joy of her recognition of sound is still just projection. We decided that this sadness does not, cannot, confuse our decision to implant her. When you are given an invention that will serve as a bridge between your child's language and yours--your child's life and yours--how can you not choose to cross it?

IMG_8785Even though we are still working to learn sign language, we are struggling. I've heard that a hearing adult (without a deaf parent or deaf sibling) will likely only reach a kindergarten proficiency in ASL. There is no country to go to where all the inhabitants are deaf. Unlike every other language you could learn, there is no opportunity for immersion. There are classes at the community college and the Deaf School and the deaf adult who comes to your home, but all day, every day, the reality is that we hear each other and we hear the radio and we hear the T.V. and we have no fluency in our fingers.

Even though not a single deaf person we know has questioned us about our choice to implant Anna, I feel that I am still defending it despite the fact that there is no other option to give her full access to a language we are qualified to give her. I see here that I am still defending the decision, most of all, to myself.

Her surgery was three days ago, and she seems to have fully healed. Her sleep is back to normal, she doesn't need Tylenol anymore, and she seems to not notice that there is anything new inside her head. I know she is ok, and yet, behind her ears are the steristrips we can't change out till Friday and there is the dried red-brown of her blood. Her nose spontaneously bleeds and I have to tell Luke while he's holding her that it's dripping onto his sleeve. Whenever I see any of the blood from this surgery, I am not 100% sure we have made the right choice, even though we couldn't have made any other one. Anna reminds me that we don't always get to make the best choice. We have to make the best choice available.

FullSizeRenderEven more than Zaley as an infant, Anna has always been calmed by the open sky and a slight breeze. Today, she wouldn't take an afternoon nap, and as the wind was whipping off the mountains and the sky was turning a dark, pre-tornado blue, I put her in the baby carrier and walked around our streets. The same flags waved on neighbors' poles, the same neighbors waved from their drives. But now our house and our walks and our child are different. Today, as I cupped both sides of Anna's head in my hands, I could feel the swell of the quarter-sized magnets under her skin. She was looking up at me and smiling her smile--the one that knows something maybe I know, too, but can't quite access. Like a word on the tip of my tongue. Anna is that word. Yes, you almost have it, she is saying, this thing I already know, this thing I already am.

On the Eve of Surgery

Anna's surgery is tomorrow morning at 7:30 AM. Today, I am doing as little mental preparing and as much logistical preparing as possible. FullSizeRender-41If I think too much about the puffy bag doing the work of her lungs, I can feel a downward rush of panic from my shoulders to my pelvis. Instead, I clipped each of Anna's finger and toenails. I shampooed and conditioned her hair. I massaged behind each ear where the surgeon will slide a knife before he removes part of her mastoid bone and inserts a magnet and a long strip of sensors. I looked at her head one last time with its sudsy hair and lack of devices. Like every mother gazing at their child of 10 months in a moment of peace, part of me doesn't want to change her, ever. She is always alert and very still in the tub, all the whooshes of water and new smells and small bubbles. This morning, she smells like a Creamsicle. FullSizeRender-44In the hospital bag, I will pack a zipper onesie that will slip on easily to avoid the large bandage that will be circling her head. A soft blanket. A bottle she will not take. A magazine I will not be able to read. Really, there is no preparing to do. I make lists and preparations that don't need to be made in order to feel prepared. We will drive to the hospital before the sun comes up and then we will trust, and all the while we'll wait.

FullSizeRender-42I've been thinking about it, and I'm not sure what other operation could be as life-changing as cochlear implant surgery. This might seem like an exaggeration, but there is life-saving and life-altering, and I can't think of something more momentous happening to a child. I know that surgeries like heart transplants are longer and more involved, but the heart that was once beating continues to beat. The body does not feel the addition of a component that never was. With cochlear implants, the brain that never processed sound will "hear" it in one split-second, pathway-carving, initial moment when we sit in our audiologist's office 9 days after surgery. We are taking Anna's existence and adding a completely novel dimension--an entire sense--to it.

FullSizeRender-43I play this game of artificially and briefly removing my senses. Sometimes I keep my eyes closed and open them in front of something beautiful--one of my girls' wide-eyed faces or the recently blooming trees. Or, sometimes I try not to touch anything as I'm walking through the house. I try to disengage my feet from my body so I can't even feel the floor. I pass by the framed pictures and the elk antlers and the leather couch and the fuzzy pillows. Then I touch something--Zaley's hair, Anna's pinky toe, a spout of running water. I imagine that this may be what Anna will go through even if she doesn't remember it. I cannot resist the preemptory joy I take in knowing that what was once unknown to her will be irrevocably known. Voices, verses, birdsong, wind. Noise makers, sizzling, shouting, laughter.

IMG_8475I can't wait to read to her. To whisper to her. To see her when she realizes what Zaley's been doing with her mouth all this time. I wonder if Anna will have some subconscious recollection of sound from being in utero. I wonder if she will often prefer silence. I wonder if she'll be able to more readily dip into an innate pool of peace than those of us born from and into noise. Will she want to go to school with her sister or with the Deaf? Will she ever experience music like I do? I know that this surgery will change the choices and the identity she makes for herself for the rest of her life. My anxiety changes its weight when it is loaded with responsibility. Still, it will be done, and I am excited. I want to witness her hear her own giggle. I'm ready for surgery, for recovery, for her to hear her dad sing.

 

In Which Anxiety Gets Eased by a Doctor and an Older Daughter

FullSizeRender-9Even though I'm taking so much joy in Anna's milestones (she can roll both ways, she eats mushy cereal by lurching forward with her mouth open like a frog, she laughs till she squeals when Zaley dances in front of her), my anxiety about cmv continues to increase the older she gets. Since cmv can have progressive symptoms, I feel I am keeping constant vigil: is she not sleeping because she has prolonged reflexes that jerk her awake? Does she need more physical therapy to learn how to crawl? Do her eyes still look ok behind the navy blue irises that are sliding more towards an Easter egg green? Most of all, I find myself circling back to the one question that has no answer--not for Anna, not for anyone really, and yet, I want to know anyways: will Anna be able to have a normal life? IMG_8183Most of Anna's 9-month-old friends are pulling themselves up on furniture, crawling out of rooms. I hold her smiling in my lap, the soles of her feet pushing together, her legs concerningly rigid, her eyes always lit with a sly omniscience and what looks to me like a cognitive sageness older than her age. People offer their comforts: "My cousin's baby didn't walk till she was a year-and-a-half!" or "My second baby didn't get teeth till she was 14 months!" I appreciate the attempts at surrounding me with similarities; the reminder of the unimportance of time relative to accomplishments does help. Plus, I do feel that Anna is like every other baby, just more of a miracle, more of a secret.

At the end of the day, though, like right now--when our house is as silent as Anna's every moment--Anna is still the only baby I know who has cmv. She will not crawl out of the room. She will not be anywhere close to walking when she's 1. Her weight will likely never be on The Chart. She is not just late; she is delayed (as in, passively effected; something other than her is postponing her physical arrivals). I am at peace with Anna's timing, with her thoughtful progress. But I have never been at peace with the cmv.

It's almost like I have compartmentalized her into two things: almost always to me, she is this wonderful, deaf, joyful child; and, yet sometimes, I think of her body as a vessel for a disease whose beginnings are linked to me and whose repercussions are both devastating and responsible for the creation of her as a full person. If I am infatuated with her just as she is, how can I not be at peace with the catalyst for the things that set her apart from every child I know?

This is a dichotomy I'll probably never be able to mend.

IMG_8209I hate cmv because I hate how much I can't know about it. I'm not proud of it, but ever since Anna was diagnosed, I have felt that humanity owes me answers. My entitlement has inched upwards on a monthly basis with most of our providers. Why didn't Children's Hospital do anything besides prescribe an anti-viral? Why didn't anyone tell me if her surgery will be inpatient or outpatient? Why can't anyone tell me anything about cmv besides that we'll just have to give Anna time to see how it has effected her system? What I have realized is that fiendishly searching for answers makes me super anxious and it makes me forget that God exists and it makes me forget that a good life can be spent bathed in questions.

{Sidenote: the anxiety issues stem from other sources, as well:

1. On any given day before any given appointment that starts at a very specific time, Zaley wants to know repeatedly and at increasing volume if she can put on her ballet clothes before we leave. Putting on her tights gives us both high blood pressure.

2. Before we walk out the door, I have to change Anna and nurse her and find her hearing aids and her hearing aid case and her hearing aid headband and the little pin that opens her hearing aids so they aren't buzzing in my pocket when she rips them off for the 100th time in a morning.

3. I have to find the time and ingredients to make and drink a smoothie with phosphytidal choline in it, which a naturopath prescribed to repair Anna's cell membranes and improve neurological function.

4. Did I remember to drink my lemon-balm tea--natural anti-viral and usherer-in of calmness, also prescribed by the naturopath who asks if I always feel rushed--at least three times yesterday?

5. Did I drop Anna's probiotics and Vitamin D onto her spoon? Or, more like, did I feed her?

6. Did I take my natural anxiety pill called SerenX that does just about exactly nothing?}

IMG_8238Something happened last week, though. I finally had a conversation with a man I've been waiting to talk to for nine months. A doctor of Infectious Disease at Children's Hospital, Dr. Jim Todd was practicing when my mom was an oncology nurse there over 30 years ago. As I sat in the back of Luke's truck with one hand dancing for Anna and the other holding the phone up to my ear, he told me that we should enroll Anna in a neurodevelopment clinic so that we can see if there are any indicators of the effects of cmv in her system (besides hearing loss), and so they can track her progress on an ongoing basis.

A NEURODEVELOPMENTAL CLINIC? Why didn't I know about this before? I wanted to hug Dr. Jim Todd, but instead I just kept agreeing with him and looking at Anna and pushing down on the little tears pooling in the corners of my eyes. He said if it was his granddaughter, he would insist on enrolling her in the clinic, and I loved him extra for that--for making me not feel like the crazy woman I maybe sometimes am.

Until that phone call, I had been relying on very infrequent internet searches to pinpoint whether or not some of Anna's symptoms might be related to cmv. (Which really does seem ridiculous--the mother of a child with a chronic disease should not be reliant on mom forums for answers. She should be led by a medical team). Dr. Todd told me that when his wife had cancer, he felt like me: "All these decisions are out of my range." He told me that cmv can be like cancer: you don't know when it's going to reappear, when--like shingles recurring after chicken pox--cmv's afflictions could resurge. (Which made my arms and legs tingle, momentarily, with that cold, Anna-as-newborn worry). He told me we have done all the right things, and that he wished we had been made more aware of neurodevelopment from the beginning. Not only did he tell me he had coached Luke's cousin's soccer team about 30 years ago in Cranmer Park (Luke's uncle happens to be a renowned orthopedic surgeon, so he had connected the last-name dots), he also said: "This is my cell phone. You call me if you don't feel you're getting the care you need."

That's the first time someone has said it: despite how many specialists Anna sees and how amazing we believe each of them to be, I haven't felt Anna has been getting the care she needs. And that's because none of her providers is an expert or even very familiar with cmv.

Doing a neurodevelopment clinic will mean more tests and electrodes and time spent in doctors' offices and hospitals. But if it means that we can help identify Anna's strengths and possible differences--if it means concrete things like helping Anna avoid wearing leg braces when she does walk because she has severely pronating feet--I want all the information now that I believe I need.

IMG_8285Zaley does, too. She wants to know how Anna's cochlear implants will work. She's so excited about them, for the last week she's been carrying a plastic set of CI's around that our AVT therapist, Nancy, gave her. She's helping me pick out the color of Anna's Skin-Its--colorful covers that will snazz up her plain-old beige devices. Zaley reminds me that at the beginning and the end of everyday, love will swallow up anxiety, even if just briefly. The first thing and the last thing she wants to do every day is kiss her baby Anna.