Advocating for Anna, not Against Her

FullSizeRender(18)A few weeks ago, I saw a Maternal Fetal Medicine specialist to have my CMV titers checked. Basically, if I get pregnant again and my recent antibodies to CMV are too high, there's a minute chance I could have another baby with symptomatic CMV. It was a weird appointment. First of all, because we would willingly have another baby with CMV if that happened to happen. Secondly, a videographer from The Denver Post had come with me to film the appointment (and this was a mama of little girls who ended up being so lovely and attentive, I wanted to be insta-friends with her). Thirdly, because I accidentally hijacked the appointment and made it more a crusade for CMV awareness, and less a discussion of my titers (which are low enough to be considered "safe"). And finally, because I found myself in the familiar position of advocating against the way my daughter already is.

FullSizeRender(11)Every time I talk to people about CMV, I feel the tension of not wanting CMV to exist, and yet, not wishing Anna to be anyone other than exactly, specifically, unchangeably Anna. Would I take away from Anna the gift of her from-birth access to silence? No. Would I take away her deafness? No. (Which I've written about before.) But would I subtract from Anna the other things that CMV brought to her body, like the burden that is her inability to balance? Probably. Would I love to see her run across the yard like Mia's daughter across the street, who is the same age, who is fast and unencumbered, who despite my best efforts is still a daily reminder of how much easier Anna's achievements could have come?

Yes, I love Anna's differences, BUT YES I want to see Anna run.

Because Anna is advancing and lucky, I should also stop here and acknowledge the mother who, this week, strapped on roller skates and went to the skate park to push around her son who has CMV and is wheelchair-bound for life. I should acknowledge this mother who will never get to see him run, who hates CMV possibly more than me, who would maybe take everything away from him that CMV has caused. Her son presumably suffers more than Anna. His mother likely suffers more than I do. FullSizeRender(15)But within this pause to consider that mother, I can't help but think, also, of the me before I had Anna, who seemed to suffer just as much as the me who has Anna. Whether we have immobile kids or deaf kids or no kids, we all come right up against the heat of suffering for reasons that aren't always as outward as disability. For me, suffering has also materialized--and just as vividly--in the wrappings of boredom, displacement, unrest, and mothering. If comparison of possessions and persons is the thief of joy, as Theodore Roosevelt said, then comparison of what we each endure is the thief of compassion.

CMV, contrary to the ongoing sufferings of the human condition, feels like a more purposeful exposure to the ways I have never lived: without the for-granted functions of a healthy body, without sound, without an automatic language. I know; I don't have CMV. But because Anna is a baby and babies aren't aware of any of the above, I believe that mothers, in a special way, experience the lives of their very young. Do I wish CMV didn't exist? Yes. Do I wish it had never come into my life? Not sure. We don't always get to find the thing we fight for; sometimes that thing finds us. Right now, CMV is that thing for me.

IMG_4711CMV has taken up great space in my head, space I sometimes wish I could reclaim and devote to better things, like praying, or carpentry, or taking up ukelele! Late at night, I research recent funding of CMV studies. I wake up mentally revisiting my pregnancy with Anna--when I could have prevented CMV. I spend hours still puzzling over CMV's symptoms--which are gifts, which are grievances. A friend of ours whose daughter has congenital CMV and is now in college told me that her daughter's greatest struggle has not been her profound deafness, but her motor delays--that not until she was an adolescent did she realize her left hand was having trouble keeping up with her right on the piano, that she could not swim or dance or ride a horse because her left leg always lagged behind.

How can the total loss of hearing make less difference than the partial loss of motor control?

The answer isn't as simple as cochlear implants, though our friend's daughter has two of those, like Anna. The answer, in part, is that deafness itself is of great curiosity to the hearing majority, and often the things we are curious about are such because they have a distinctive and unreachable beauty within them. And, very importantly, deafness has a community. Gross and fine motor delays, on the other hand, do not have a community. And neither does congenital CMV. It is one of the heaviest burdens of having a child born with this disease: we are alone. And even more frustratingly, we are many.

FullSizeRender(17)When we first found out about Anna's CMV, the P.A. at Children's Hospital here said another mom was putting together a support group for parents of kids with CMV. Then that mom moved away. I have spent the last year waiting and being angry that no one else started a group. So committed to my bitterness was I that it didn't even occur to me until last week that I should just start one. I realized I should start one because as soon as The Denver Post piece got published, a number of people found me on Facebook and started asking medical questions, personal questions, desperate questions that no one had yet answered for them.

FullSizeRender(13)I just turned my phone off after consoling a terrified mother of a one-week old in Tennessee who has congenital CMV. She asked me if I'm part of a support group, and I didn't want to tell her the truth: that there isn't one. I remember Luke saying to me, when Anna was diagnosed, this was possibly the worst diagnosis--not for Anna, but for a person like me, who is fed not only by knowledge itself, but in the belief that knowledge exists, in experts and in literature--that it is available and abundant and ready at any moment for the plucking, and that it can be saving.

CMV is a special kind of thief. Not only can it take away entire senses, but it has also done so by convincing the world that it doesn't exist. So, this is what I advocate for: that we use its name so people will know of it, that we prevent it (which is wholly possible), that we continue to tell the story of our children who are beating it.

FullSizeRender(9)At Anna's Early Intervention meeting, we set goals for her to reach by this fall. We don't hold her to them, we hope for them. We nudge her from behind, a palm steadying the back or a hand reattaching an implant, pushing gently in the direction of her natural trajectory. By next fall, we agreed:

  1. Anna will walk all the way around the block.
  2. Anna will sing a song.
  3. Anna will run.