DHH Plus

Living in the Gap

By Kayla Lee, Montana H&V

When you’re handed down a diagnosis for your child, your world momentarily stops. Not because you lack love but because the uncertainty of the unknown can be crippling. Then, to add insult to injury, you have providers, family members, therapists, doctors who are all word vomiting terms you do not know or understand, those who are offering up unsolicited advice like it is candy, the insistent bias of what communication modality to use or not use. Survival mode kicks in. You are nodding, absorbing, pretending you’re keeping up while your mind and your heart are quietly sprinting ahead.

You’re warned about delays, barriers, limitations. You prepare for battles you haven’t even chosen or been presented with yet. For a while, you believe them. You believe the hardest parts will be the appointments, the technology, the scheduling, the phone calls, and emails. You think the weight of it will live in the logistics of juggling it all, but that isn’t where the bulk of the difficulty lies at all.

The hardest part isn’t learning a new language, a new technique, or a new therapy. It is learning to slow down enough to truly see your child. It isn’t the devices or the therapy schedules per se. The hard part is unlearning the fear that was handed to you alongside the diagnosis. It is separating your child from the other’s projections, who confuse “difference” with “deficit”.

What no one tells you is that the hardest moments often come quietly. In waiting rooms where your child is thriving, but the paperwork still says “concern.” In conversations where you’re celebrating milestones while others are still offering condolences. In realizing that you won’t let the world’s discomfort with difference be your child’s burden to carry, but somehow it becomes your challenge to overcome.

What isn’t hard, despite all the warnings

It isn’t communication. You discover that your child will develop communication in the manner that works best for them, once you allow yourself to set down the bias, the timelines, and the worry you never asked for. It surely isn’t loving your child. That part is effortless. It isn’t the missed or late milestones, or delayed language, or any of the perceived negatives you were told.  You come to learn and rely on the fact that you know your child better than anyone else.

The gap between what you were told would be hard and what actually is becomes a kind of reckoning. A grief for the fear you carried unnecessarily. A quiet pride in how wrong so many predictions were. A steady confidence that your child is not defined by what they hear, how they hear, or if they hear. They are not defined by how fast they are progressing, what milestones they are meeting, or what their learning needs may be, but by who they are and who they are becoming. You learn that what’s hard isn’t raising a Deaf or Hard of Hearing child. What’s hard is raising them in a world that keeps underestimating them and knowing that it’s now your responsibility to help burn the bridge of ableism in the gap. ~

H&V Communicator – Spring 2026