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.