One Family’s Journey...
Reaching a New Normal
“…So, it’s been regular old life, with some Deaf Stuff thrown in, which truly, finally, feels like regular old life, too. I’ve been saying to people for four years now that Nadia’s deafness is ‘our normal.’ Now it’s really true.”
Congratulate me, please! I almost completely forgot to attend my daughter’s parent-teacher conference today. This is a proud accomplishment for me. Let me explain.
My daughter, Nadia, is five and a half years old today—no longer “plain five” as she would have told you just yesterday. Nadia is profoundly deaf. Before reaching this period of our lives, I would have spent part of each of the last several days leading up to her parent-teacher conference writing notes to myself and making lists of things to query her teacher about. I would have prepared to seek out reassurance, and, yes, things to worry about regarding Nadia’s hearing and vestibular challenges caused by Cogan’s Syndrome, which decimated Nadia’s until-then normal hearing and balance when she was 18 months old. I would have interrupted my husband’s movie-watching or pleasure reading with anxious interjections that start with, “We really have to remember to ask about…” or “I so hope the teacher doesn’t tell us that Nadia…”
I probably would have started analyzing, criticizing, even -- the precious artwork and writing that comes home in Nadia’s backpack every afternoon, maybe bringing some of it with me to the conference to ask if her teacher has ever seen Nadia draw a dog that actually has four legs, or if Nadia’s ever attempted to write her last name on her own. I would have reviewed the catalog in my head of Nadia’s reports about hurt feelings in the classroom and playground offenses to be ready to explore how Nadia’s social experiences are shaped by her hearing loss. I definitely would have told any close friends and family members I talked to recently that the conference was coming up, wearing my anxiety on my sleeve.
Instead, the last several days have been filled with excitement about the arrival of Nadia’s kindergarten registration packet, a 70th birthday celebration for her grandmother, the anticipation and excitement surrounding a trip to see my family in D.C., a broken FM, broken brand-new ear molds (and a very accommodating audiologist), allergies, play dates, work deadlines, Show and Tell, grocery shopping, dinners with friends, and all kinds of typical five-year old frustration and joy. I even got reacquainted with a childhood friend from over 30 years ago on Facebook, told her all about life in Maine and my awesome daughter, and did not even think to mention that Nadia is deaf. So, it’s been regular old life, with some Deaf Stuff thrown in, which truly, finally, feels like regular old life, too. I’ve been saying to people for four years now that Nadia’s deafness is “our normal.” Now it’s really true.
My cousin-in-law (a speech-language pathologist) told me in the raw, painful days just after Nadia lost her hearing that “she’s still going to be whoever she was always going to be, you know.” That was far easier to nod and “mm-hmm” to than to internalize for me. What made it finally sink in? While I am not entirely sure, I am clear that certain factors have been a vital part of my getting to this place: Nadia’s mighty team of teachers, consultants, providers and supporters; Hands & Voices; time. It is amazing and merciful how such things can come full-circle, and what is once impossible to fathom becomes entirely natural.
I admit that I share all of this for some reasons that are self-serving. I have been around this block enough times now to know that my hold on this feeling of comfort and competence as the parent of a deaf child will loosen at times, especially at times of transition, and this pleasant, cruise-control parenting will morph into something that feels downright reckless and scary. So, when Nadia starts kindergarten in the fall and I am a questioning, protective, pessimistic ball of mom-angst once again, I will be able to read this and remind myself that Nadia is just fine.
But my writing is motivated more so by the desire to share with other families my journey as Nadia’s mom so far, or else I would not bother to broadcast the embarrassing details of my inner ramblings and self-torment. I could have written the fabulous update I had outlined about the new Follow-up Coordinator recently hired by the Maine Newborn Hearing Program (MNHP) (her name is Deb Riddell, she is a parent and is indeed fabulous herself); the amazing work MNHP has been doing in the area of risk factors for later onset hearing loss with substantial parent input, about which I am extremely proud; and the fact that Maine has recently submitted to national H&V what we believe to be a fine chapter application with a highly impressive group of individual applicants as Maine is set to move forward with our state chapter. Instead, I felt the need to put my Parent Hat on today as an endorsement of and testament to so many Hands & Voices colleagues, families and professionals whose sharing and unbiased support have made all the difference for me, my daughter and my family.
So, the parent-teacher conference went well (though we were 15 minutes late). Nadia’s teacher would not be surprised if she becomes one of the first women presidents of the United States, and, if not, she’ll use her good heart and leadership skills to do something interesting for sure. She is plenty ready for kindergarten, even though she still tends to command conversation and has trouble listening to directions all the way through. We’ll keep helping Nadia to work on all of it from any angle that makes sense, since neither we nor her teachers can tease out what about her may be the result of her hearing loss, as opposed to just being part of her generally big personality. The best part is that it really—finally—does not matter. ~