Panic & Guilt
Over the last several months, I have had the opportunity to speak with countless people about our family’s experience with postnatal hearing loss. I suppose that publishing a book and spearheading an awareness campaign give me a platform I didn’t have before. Organizations, universities, and podcasters continue to be interested in unwrapping the parent-perspective of pediatric hearing loss.
As I’ve had the chance to tell our family story several times since May 2021, I’ve also been able to finally identify and label the most burning pieces of how I came to terms with Bridie’s hearing loss. For a long time, I described my emotional and mental state as a thick, cold fog of grief that appeared suddenly and consumed me from every direction. When her hearing status was officially confirmed, early intervention enrollment began immediately. Decisions about amplification and whether or not to begin learning American Sign Language were front and center. We received a lot of solicited and unsolicited advice and my mind struggled to keep up. I didn’t want this - I didn’t want any of this. I didn’t know how to do this.
Talking about my experience as a young mother who gave birth to a beautiful baby girl and then who failed to recognize her child’s change in hearing status (and the worsening language and developmental delays that followed) enabled me to really dig deep. Over the last six months, I’ve been able to pin point exactly which emotions held me hostage in that first year or so. Was I grieving? Sure, but there was something else. Something more specific that was chewing my insides back then, distracting me. I am still haunted by them 13 years later.
Panic and guilt. Those were the two emotions that took center stage during the first year or so following Bridie’s diagnosis of permanent sensorineural hearing loss. When our questions about how, when, and why her hearing loss occurred went largely unanswered, it left me alone to wonder if she would lose whatever residual hearing she had left. Then what? What would that mean? Looking at the developmental reports that showed how far behind she was in speech and language skills led to questions about kindergarten readiness. Bridie was still 2 years away from kindergarten, but we were already developing a detailed IFSP and a Part C transition plan.
Looking back, I realize now that my panic and guilt was driven mostly by unanswered questions and the unrealistically high expectations I had of myself as a parent new to the world of disability. How can I be everything my child needs if I have no idea what I’m doing? How can I protect her? How can I save her?
In the end, it was connecting with another family of a child with hearing loss, who was a few steps ahead of me, that helped lift some of the fog. With her support, my panic shifted to reasonable worries. My guilt was acknowledged. I didn’t need a therapist. I didn’t need a prescription or a self-help book. I just needed another person who was familiar with the emotional journey to sit with me, and softly smile and say, “I know this is hard. You will figure this all out - it takes time.”
I remain grateful every time I talk with students or retirees or families or professionals about how postnatal hearing loss impacted our child and our family. And, I remain convinced that the time is coming when children with acquired hearing loss are identified sooner and parents are connected to appropriate resources sooner. Until then, I will continue to share the story of my panic and guilt hoping that someone in the room who is listening to me will be inspired to help families like mine.
