There are the things I could write, and then the other things I could write. I planned on writing a happier post about the piano tuner coming this week during Anna’s nap and how ironic it was that the piano was in Anna’s room (“She’s deaf,” I said. “Oh,” he said. “Well, that’s handy.”) I planned on writing about the shimmering, sundancing water at the beach, Anna scooting around on her stomach, trying in the cutest way to get her knees under her even though she sticks her legs straight out, pushes up on her tippy toes, and pulls herself forward on her elbows in a commando crawl. I thought of things late at night that I wanted to write. How Zaley told me she can’t wait to put a princess dress on Anna in the fall when she’s older (everything will happen in the fall!!), how Anna has started to wave when you say “hi,” just at the sound of the word hi, before you’ve even raised your arm. How we tuned up her implants remotely, and how she is turning to the sound of the slightest “shh” over her shoulder. How her condition has changed everything up here: how our friendships have both narrowed and widened, leaving no time for those we can’t really connect with or who expect more time than we have to give; and how deep–though brief–our conversations have become with the people who understand that between our five or six therapies a week, we can only do things as wedged-betweens, sporadically, snuck into the interims between OTs and AVTs and ASL and Skypes and swimming and gymnastics and napping.
But now, getting online to write all this, I finally got an acceptance email from the Baylor Parent-to-Parent Network for the National CMV Disease Registry. As an attachment, I received the names of the registered children and parents across the U.S. who have been affected by congenital cmv. This is a hard attachment to read. The left column gives the contact info of other parents, by state, whose kids have what mine does. In the right column are all of their symptoms. The symptoms make my chest tighten. I am not exaggerating when I say the symptoms seem like everything. Global brain damage, seizures, microcephaly, mouths that don’t close, G-tubes, progressive vision loss, total blindness, deafness, progressive hearing loss, inability to speak, compromised lungs, liver, spleen, esophagus. Massive reflux, immobility, spastic quadriplegic cerebral palsy.
And, so, now I feel I have to write about that.
Every single thing I just listed physically hurts me to think about. A headache began when I got the email. The headache continues. This is different from before I had Anna. Sure, the problems of other peoples’ children deeply saddened me. But now, all these things are not what happens to other children. Some of these symptoms are the things that could be in our child, just waiting, that could possibly still befall her. I read this list and I can feel, in part, the quality of these parents’ days, even if Anna’s condition isn’t half as advanced as theirs. Perhaps Anna’s greatest power is that she has been a portal to empathy, which is about one of the hardest things, I think, a person can attain. The mental act of “walking in another person’s shoes” has always felt arduous to me, never quite satisfying enough to teach the sought-after lesson. But in my daydreams and in this first year of Anna’s life, I have experienced a different kind of empathy on a biological, visceral level–one that cannot be conjured with mental exercise. This is a special kind of empathy, I believe, reserved for any parent of a child with a disease that can possibly be progressive: you operate, largely, in the alternate, imagined universe of everyone else who is going through this same state of half-curiosity and half-fear and, at least in my case, inside a thin membrane of hopefulness.
That thin lining of hope occasionally ruptures when I see another baby, Anna’s age, who is doing everything she would be doing had I not caught a preventable virus. These babies are walking, saying their first words, moving between rooms, all with what feels like an insulting obliviousness to their blessings. I watch them with awe and sadness. How quickly I have forgotten Zaley’s timeliness with everything as a baby (did she really [fill in the blank] this early??). How easy it is to wonder into the ether of the virus-free world. How hard it is to rise above my desire for Anna to catch up rather than be on her own time. But quickly I snap out of these moments of greediness to know Anna as the other baby, the non-cmv one she might have been; lately, she has been singing and squawking at alarmingly high volumes like an exotic bird and at the sound of her voice, I am instantly brought back to the wonderful her that I would not change.
I’m reading Alexandra Fuller’s newest book, Leaving Before the Rains Come, and of her often life-threatening upbringing in Zimbabwe and Zambia, she writes: “No one was too special to avoid suffering.” As I was reading this, I realized that, for most of my life–having grown up safe and cherished–I believed the opposite. Before I had Anna, I think I secretly believed I was too special to have a child with special needs. Those were other people, people with less healthy habits, or less means, or less education, or less this or less that. (I know, it’s stupid).
What I know now when I see a family with a special needs child is that they are people who contain an immensity of experience and, in most cases, that translates to knowledge. I know that if they are nice in the grocery checkout line, it may be taking them a shit-ton of effort, that day, to be that way. I can assume that they appreciate life differently, not in a sentimental way, but in a pragmatic way. They know the difference between an easy hour and a difficult hour. They don’t post dramatic photos of their frowning children on social media during menial visits to the hospital. They don’t talk about milestones unless asked. They have a sense of optimism that is unbelievable and uplifting and heartbreaking.
On the Parent-to-Parent list, there is a 23-year-old who has never slept all night (the longest she can sleep is 3 hours), who has never spoken words, but loves Mozart and opera. There is a 3-year-old who functions on the 1-month level. There is the child whose story is riveting to me, because he is from Colorado or he’s like Anna or something just moves me about it, until something is pulling my eye up, and then I see as my hand goes to my mouth, that there is also listed, under his birthdate, his deceased date, at somewhere close to his third birthday. Now it is clear. Now I really know how lucky we are. Now I am more confused: why do some suffer so much more than others, even when the causation is the same?
I think this would be easier if I didn’t believe in God. If a virus were just a biological mishap, I could pin Anna’s struggles to crawl or break a tooth on entropy. I know that when bad things happen, people often question their belief in a source of all-goodness, and because that is happening in my mind some of the time, I feel like a stereotype. I feel like people might look at the effects of a virus and say, “See? How can there be a God?” But then I look at Anna and I think, see, there must be one.
So, that’s what I had to write. I wish it were lighter. I know it’s all over the place. Two of Luke’s brothers are living here now, in the family room mostly, and our friend Jordan, another fisherman, is also here for the week. They are all just out of the hot tub and in their underwear, eating chips and talking about electronics for their boats. I like to think that if I look straight at what stress actually is, it kind of just vaporizes: stress is all projected, all based on a progression of symptoms that are not yet here. Right now, the kids are asleep and there is salsa and the really good chips we have here called Juanitas, and I see now that Luke has just pulled out some shredded cheese.