In a Perfect World:
Rants, Raves & Realizations
Genius is the ability to hold two contradictory truths in your mind at the same time without going crazy, according to author Lance Morrow. I get that. Raising a child who is deaf or hard of hearing gives parents plenty of opportunity to test such a theory. On the one hand, we can get on a soapbox and rant over the endless insult of systemic inconvenience, injustice, and incompetency. But we can also proclaim from the mountaintops the victory of overcoming those challenges and the unique joys of sharing this life with our children. Mostly, we balance somewhere between the highs and lows, alternatively boasting or commiserating with other families who also live in this place of peaks and valleys.
Pick a theme, we can rant and rave about it. Here’s one I can riff on endlessly:
Rant: Hearing aids were considered a “cosmetic device” by our health insurance provider, so they wouldn’t cover such frivolous equipment for our deaf son, Dane. This was only one of so many frustrations that would require a mandate to fix.
Rave: Dane has been dragged down to the state capitol since he was eight years old to help put a “face” on issues like this to legislators. By the time he was a teenager, he was no longer just a “poster child” but a young citizen giving his own testimony in a hearing while I stood bursting with pride from the back of the room.
Rant: How I wish there was no reason for Dane to have to appeal to a bunch of powerful but clueless and distracted legislators* for such a basic human right as effective communication access to a quality education. How I wish he spent those hours playing soccer or building a tree house or reading Harry Potter or even writing his name with bleach on his bedroom carpet (which he actually did, to our horror, I include this example only to emphasize my point).
Rave: Dane has experienced so many amazing things—including but not limited to successful legislative lobbying—because he is deaf. For that matter, I myself have seen and done things I never dreamt I was capable of because I have a deaf son. To date, there is no equivalent issue that has compelled me, his dad, his hearing siblings or cousins or classmates to personally engage at this level and influence the process of governance of the land in which we all live. This is a pretty big deal. Who knows where such stepping stones laid during his formative years will lead Dane in the future.
Right now, I’d settle for these “stepping stones” to lead Dane to a more focused, timely and direct path through college. I don’t know what plan we are on, but it is definitely not the traditional four-year plan and the deviations make me purse my lips. But alas, I digress. In truth, you may learn the scientific explanation for why the sky is blue while you’re in college, but life experience takes the lesson to a whole different level. Technically, without darkness there is no contrasting depth or dimension to define light. Doesn’t life work just like that? What we know about “light” often comes from some pretty dark experiences. Light and dark, good and bad, happy and sad all live together quite inextricably when you think about it. In a perfect world, we dwell comfortably in this paradox. After some shock and grief, the hearing parent with a newly identified deaf baby and the fourth-generation Deaf parent who has just learned his infant has normal hearing will both be expanded in the most wonderful ways by the experiences this little human being will bring. In the grand scheme of things, it really is quite brilliant. ~