Last Friday, we had the neurodevelopment appointment for Anna I’ve been anticipating for six months. Part of me didn’t want to know if Anna has any neurological deficits–what would we do if we found out, for example, that she has abnormal wrinkling in the brain? Would I treat her differently? Would I lower my expectations? Would I attribute certain characteristics of hers to something that could potentially be fixed?
I decided a few months ago that the answer is no. We would not treat Anna differently. I honestly would not have any expectations other than what I already expect, which is that she will surprise me every time she arrives–either early, on time, or late–at any of her milestones. I do not feel that we should have done something for Anna that we didn’t (besides preventing CMV in the first place, in-utero, but that would have been impossible because I didn’t know it existed). All those no’s are why I kept the appointment. I felt that I owe it to Anna, later, to provide her with information that might be considered a baseline–or, proof that she is as unhindered as we could ever have hoped. I want her to look at data on herself for the rest of her life and feel like a champion.
A year ago, I’m not sure I would have said the same thing. A year ago, Anna was four months old. I was scared. There were a lot of new acronyms to absorb–conditions, support groups, interventionists, therapies. We didn’t know if Anna would ever sit upright unsupervised or if her auditory nerve could support cochlear implants. On Friday, I sat in front of two doctors who opened the door with immediate surprise to find this tiny child–she’s the size of some six-month-olds–who was standing up and waving her jelly fish/diva wave (the hand slowly petting the air), who cruises between bodies and chairs and sits on her heels and raises her palms and chirps out her ideas.
She is affectionate and silly, conversational and focused. She is stubborn and tantrums often, and I see in her Zaley’s independence and wired intensity. Which makes me both proud and scared for my sanity.
I was also scared a year ago because no one offered me an appointment like we had on Friday. Last fall, when we got back from Alaska, we had no comprehensive exam, we had no answers. I know that the mystery of every child is that you don’t know who they’re going to be. But when you receive a diagnosis as potentially severe as CMV, that shiny, birth-given mystery is largely mattefied by fear. In dark moments, instead of thinking, who will my child be when they grow up, I sometimes thought, how will other people see my child as she grows up? Will she have a walker, will she be made fun of for her hearing devices, will she speak differently, will she be considered inferior because she isn’t a normal size, will her face have a slant of otherness to it that gives away the fact that a virus got stuck in her brain stem and scrambled stuff up?
So far, people are never unkind about Anna’s implants or her smallness, but I often forget that what we do is different. The last time we were on an airplane, I was reattaching her cochlear implants for the 20th time that day, and when I looked over, I could see that the whole row was craning forward to see what I was doing. I smiled, they smiled; these smiles are both a bridge and a divide.
We are so different now from so many people we love. It is tempting to say: look, you don’t understand how busy we are, how many appointments we must fit into a week, how frustrating and mood-altering it can be for the mother who sometimes thinks of all the picnics she could take with her kids if it weren’t for all the therapies. But to do so–to highlight for others how Anna has made our lives different than the norm–would be to burn the bridge of interest others have in Anna that holds us up so we can still feel normal, or better than normal: Anna has changed the way Luke and I love each other, and it has maybe made our family even more loved than we were before. I think this because when I think of our friends who have had atypical children, for whatever reason, my love of them has inflated a little, which I picture happening inside me, like my heart is puffing up a small red balloon. Thank you, to all our friends and family, who never make us feel different, even if our lives are different now that we have Anna. And even if, on my bad days, I am poorly inclined to wear our differences like a medal.
Anna’s developmental appointment last week was attended by two doctors–both mothers of young children! yes!–who basically played with her for four hours, “slipping tests” into more activities and toys than Anna had ever seen. She did things I didn’t know she could do: drew lines on a sheet of paper, pointed with her index finger at an item as a request, made the “shh” sound with her finger to her mouth (or, sometimes, mashed against her cheek), and then another 20 things I’ve already proudly witnessed. When they tallied up her points on the Mullen Scales of Early Learning Test, she scored:
Visual Reception: 18 months
Fine Motor: 16 months
Receptive Language: 13 months
Expressive Language: 14 months
Gross Motor: 11 months
I spend so much time in thought and over-thought that to have something as concrete and objective as someone else’s “scores” for Anna was deeply comforting–even the areas where Anna scored lower than her age range. I don’t mean to reduce her to measurements, nor do I think that a “score” is an accurate, even close to holistic assessment of any child. I like the numbers because I know that in each of those numbers is hope and hard work and for sure, heaps of mystery. Again and again, our CHIP provider and her doctors have said, we really weren’t expecting her to do this well on her language scores since she’s deaf. I did. I expected all those numbers about as they came out. But in the hours when Anna is tired or zoned out, there is always the part of me that skips too far ahead, and wonders if she’ll do ok in school, if she’ll be frustrated by the power of her will, if CMV has had some hold on her that is invisible and still waiting to reveal itself as the things she cannot do.
Will this be different than raising any child who cannot achieve what they desire? I’m not sure. I think so. I think we will always have blame, or at least suspicion that her condition is responsible for specific challenges. Especially when it comes to her mobility.
Anna’s gross motor skills are definitely the most grievous part of watching her overcome this disease from birth. I can tell she badly wants to stand up without help–she’ll begin in a squatting position, hinge half-way upwards, then fall back down onto her butt before folding completely over her straightened legs with her head on the floor between them, sometimes silently, sometimes glancing up at me sideways and yelling, like, come on! what the hell? The good thing is the doctors we saw at Children’s did reflex tests on her legs and feet and they communicate immediately to the brain, which came to me with a relief as strong as the sensation I always have on my first lap of swimming. Her muscle tone is simply too low. She’ll get there, I know, but you can’t do weight lifting with a baby. She must do the work with her own body. Her suffering is inside her, and her healing is, too.
Some days, it really is difficult to watch my child struggle with something that isn’t genetic, especially when her friends are running across the yard to catch siblings, already labeling things in two-word series. In these comparisons, the old virus rears its ugly head in the story again, the preventable piece of her narrative, the one whose absence occurs to me in flashes of whom Anna would be. But I cannot picture her unlike herself–that child is like a picture almost faded to white, or a nighttime dream, nearly forgotten. Instead, I get charts and tests and more information on my child than most parents will ever receive. I keep them in a file on my desk, the numbers highlighted, my little prize fighter sneaking up the stairs behind me before I even hear her.