Tuesday, June 21, 2011

Learning to fly

Learning to Fly
By Meriah Nichols

Sometimes I wonder if parenting a child with a disability -- as a parent with a disability -- is as much about logistics and tools as anything else. That with the right, bright bits of click, it's no more nor less than anything else anyone else would experience.

Let me explain myself. I am deaf -- little "d" deaf. This means that I can hear but I have what is called 'cookie bite compressed hearing.' My hearing starts at 0 decibels (essentially what a grasshopper is said to hear), goes down to 70 or so decibels (moderate-severe loss), then back to 0. At 80 decibels things become too loud. It's like the giant blue hearing monster took a big bite out of my cookie then squashed it, that's what it is. Leaving me with the oddest hearing ever -- I might not hear you say hello but I can hear someone rustling plastic bags about a mile away.

I also went through the windshield of the car when I was 4, back when seat belts were a delightful accessory and car seats for children were probably an ungerminated idea from someone yet-to-be-born. My head was spectacularly torn open -- my face is criss-crossed with scars -- and shaken up.

Added to this little sundae of disability is my cherry of vision -- I am one notch under legally blind. I wore coke-bottle glasses of the variety that were so heavy that they left permanent grooves in my nose. You name it, I was called it at school. From the more exciting 'frankenstein's wife' to the rather mundane 'scarface' and altogether unoriginal 'four-eyes.' And everything, everything in between.

It took me about 30 years to get over it. To come to a place of not only acceptance of myself, but a place of pride. I am proud of who I am, who I have chosen to become. Of my life, thus far. I am of the opinion that my scars fit my face, or that my face fits them: either way, the point is, they belong together. My hearing (or lack of), is, I feel, a blessing not to be taken lightly in the wailing face of a tongue-wagging, tantrum-throwing howling toddler. How many parents have the option that I have, of turning OFF their child, staying calm and firm with them? Truly. It is a wondrous advantage.

Thirty years. And I was in a good place. Then they told me that my second child, my (unborn) daughter was going to have Down syndrome. That, somehow miraculously resolving the diffuse fetal hydrops that she had (right along with her heart holes), she was going to come with an extra chromosome. We were told she'd be a burden for life, one that we were encouraged to terminate.

In one swoop, rather like the feeling that a bucket of ice had been dumped over my head after I went through the windshield, my 30 years of growing to a good place was gone. Utterly, completely gone. I was back to being the little girl standing there on the playground, sobbing as someone eagerly seized his advantage in mercilessly teasing me. Back to that place of wondering what, as someone had later asked, could possibly be good about me when so much was wrong?

The choice to have the moxie to have Moxie was not lightly made. What cinched it was the sudden realization -- the gut knowledge, belief, whatever it is -- that all of our paths are precisely that. Our own. Mine was mine and is not Moxie's. Her way in life will be as she makes it. The pain and misery and depression and all the rest of it that I experienced is not hers, was never hers and will not be hers.
And so. My Moxie came, complete with her extra bit to love.

The biggest hurdle for me - the one of accepting her precisely as she is -- was jumped. As a parent with disabilities, I was left with, as I have said, the logistics of disability. How to hear her when I can't hear. How to check up on her. How to remember things like all of her appointments. How to stay awake when my narcoleptic bits get triggered because I am stressed out dealing with a stupid bureaucratic system. How to deal with the seemingly endless phone calls I need to make on her behalf...when I am deaf.

Perhaps parenting is a process, much like learning to fly. If you were born with -- or acquired -- a set of wings that fly differently from your flock, well, then you need to learn how to fly with what you have. And then when you look down and see that your little chick has wings that are also different from the flock, different from yours even -- then you need to figure out how best to guide and help your chickadee.

All the way, flying with the wings you have. All the way, loving your little one as best as you can.

After designing, implementing and spending the past 8 years managing an employment program for students with disabilities at UC Berkeley, Meriah Nichols is now a full-time Mom to two: Micah (3) and Moxie (1) in the San Francisco Bay Area. She also works part time in employment coaching, as a guest editor for the Assistive Technology Coalition. She tries to work on her urban homestead every day. She can be found on her blog at doozeedad.


The 'it's not fair!' voice, the voice that does nothing good, has been creeping into my head a little lately. Thanks for the reminder that life with my daughter is what I make of it.

Your post really inspired me. I like your writing a lot - and your honesty.

This is beautiful, and a rare window into your soul.