Living Inside the Unknown

cCMV Diagnosis & Resulting Issues

By Megan Nix, Colorado H&V

It was my daughter Anna’s first Individualized Family Service Plan (IFSP) meeting, and I didn’t know what to expect: I had an infant with a disease I’d never heard of; she was deaf and I’d never known a deaf person; we were having people over to plan for her future and I knew her future was entirely clouded by questions.

Were these people going to be proficient in sign language?  Would they ask for details I didn’t have? And, how could we make IFSP goals for Anna if her losses could all be progressive?

Three months prior, Anna had received a diagnosis of congenital cytomegalovirus, or cCMV: a common virus that’s only dangerous if you’re severely immunosuppressed or pregnant. I had unknowingly caught CMV during my second trimester of pregnancy, likely through the saliva of my toddler, and it had impacted the development of my unborn child’s ears, feet, and brain. She had profound bilateral hearing loss, feet that angled inwards, and an asymmetrical brain. I knew that Anna could also go on to have cerebral palsy, lose her vision, and be unable to sit up or eat.

I knew one other thing conclusively: that I loved Anna completely, explosively, with a vigilance like I was taking amphetamines. I didn’t realize it then, but this vigilance was the cornerstone that would form my approach to her childhood and advocating for her needs.

That day, though, I was basically surviving—trying to balance the cocktail of adrenaline and sleep deprivation—as I tried to prepare for her IFSP. I put grapes and almonds on a plate with some smoked salmon from the small town in Alaska where my husband fishes for four months each year. I watched Anna in the bouncy seat while I prepped things in the kitchen: the way her eyes followed the planes in the sky; the way she smiled slyly as soon as her older sister came into sight. Then I looked at the plate; it looked like something I would serve at any gathering we’d have at our house, and yet, this day was different, like everything that accompanied Anna. It contained expectation, worry, mystery.

My husband took my older daughter somewhere (which I half-regretted and half-appreciated, knowing that I wanted him there and yet couldn’t focus with a toddler jumping from the coffee table to the couch), then the people started to arrive: the CO-Hear (Colorado Hearing Resource Coordinator), the Early Interventionist, the case manager, a case worker in-training, an OT. There were five or six of them, and most of them declined to sit on any chair, as they would for the next three years, preferring to be right next to my child. They were energetic, tending to my black-haired baby like she was the best thing they’d ever seen. I sat on the floor, too, and held her supine in my lap—she had no head control and wouldn’t for many months. Everyone asked questions, gently and respectfully. I told them about her birth, how well she nursed, how her right fist never relaxed. People listened with unusual attention.

It was tender and heartbreaking. I was deeply moved, but I wanted none of them there. I wanted this to be a gathering of friends, a typical-baby “sip and see.” And yet, there was also this fact: when it came to Anna, I wouldn’t change a thing. I realized, sitting on that floor, that this was my new world so I’d better get to know it well. I wouldn’t have much time for my less-scheduled friends and their kids, but I would have years and weekly get-togethers to get to know these people, and instead, depend on them.

Though much of that day is a blur now, I remember Anna’s giant, feline eyes circling the fan on the ceiling. I remember the hot pang of tears when we started writing goals. Anna will sit up unassisted, the case manager typed. Anna will bring a Cheerio to her mouth. Anna will use signs to communicate. With her hearing devices, Anna will start to respond to a few sounds. Underneath my eagerness to believe that Anna would eventually do these things, there was a dark, lurking fear: what if she can’t?

I nodded, accepting the goals, but too choked up to answer. These things all seemed unbelievable to me—that my child would actually be able to accomplish such achievements. I flashed back to raising my typical daughter, now almost three, and I realized how flippantly I had approached all of her successes: first bites, first words, first steps, as though all the motions a body goes through are guaranteed.

We would work with an OT, a PT, a Deaf sign language tutor, an Auditory-Verbal Therapist. There was not a Deaf person in the room, but looking back, I wish there had been. When we met our first Deaf teacher later that year, I felt like she was a window into my daughter’s world—a window I would have liked to open that day.

I made appointments to meet with the OT and the interventionist and thanked people on their way out. I then stood at the sink and cried like a wild animal behind my hands. It wasn’t out of sorrow; it was out of some stirred-up combination of being overwhelmed and feeling relieved. We had a plan. And I love plans.

I didn’t necessarily expect Anna to reach all the goals they had made for her (though within the year, she did). The goals gave me a concrete place to reside, rather than revisiting the cave of my fears: that she wouldn’t live a happy life, or, that she wouldn’t live long enough for me to know her as an adult.

Barbara Kingsolver wrote: “The very least you can do in your life is figure out what you hope for. And the most you can do is live inside that hope. Not admire it from a distance but live right in it, under its roof.” How fitting, then, that early intervention for Anna happened in our house, where Anna’s unknowns actually became the source of our hope. The things Anna cannot do are the things that I continue to hope for the most. She keeps me wondering, she keeps me striving. And, she keeps surprising me.   ~

Editor’s note: Nix, a mom and writer who lives in Colorado and Alaska, realized quickly that she would have to become an expert on her child’s needs and on CMV. She writes and speaks about cCMV nationally. Watch for her upcoming book about CMV called The Silence Virus and find her at www.megannix.com. 

The Communicator welcomes parents and professionals to submit articles on any aspect of D/HH Plus. Help us unwrap the gift by sending stories to editor@handsandvoices.org

H&V Communicator – Summer 2020