I had the most vivid dream the other night. It was years in the future and I was waiting for Gabriel, now a young man, to come out of surgery. I’ve been there before, but this time there was hope in my heart instead of just an empty, aching sense of loss. I was ushered into the recovery room and anxiously stood by my son’s bedside as he made his groggy way back to consciousness. He blinked. And then blinked again. His eyes widened as he took in visual stimulation for the first time in his life. Tears filled dream-Stacy’s eyes as she realized that the operation had been a success, the computer chips in my son’s eyes were allowing him to see for the very first time.
Dream-Gabriel looked at me, astonished and said, “Wow. Mom. You look absolutely nothing like I thought you would. Have you always been so small? Now step aside so I can show you how I can perfectly cook meat with the laser function of my robot eyes." Then we ate T-bone steaks with our hands like savages and laughed about how he used to be blind.
My first thought when I woke up was, ‘Holy crap. That’ll teach you to eat sushi at midnight.’ My second thought was, ‘Where the hell did that come from?’ I live my life with only one absolute certainty these days: My son is blind, blind since birth, and blind he will ever be.
I’ve caught a lot of flack for that certainty over the years, people have encouraged me to chase all sorts of miracles from biblical to scientific, but this is the way that I get by. My Little Dude is blind, I have to make the best of it, I need to own that shit because that’s who I am – a realist. I am not capable of being the best ‘Blind Mom’ I possibly can be if half of me secretly yearns for Robo-eyes. Incidentally, why would Gabriel try to be the best blind guy he can possibly be, if he’s betting that one day he won’t be blind anymore?
If you ever want to see me go from polite to irate in 0.7 seconds, come up to my kid and I and tell us how one day technology will let him see. I’ve said it before, but false hope is the absolute worst. There are people on the fringes of my life who have the luxury of thinking about things like that, and I say bully for them. Maybe one day those thoughts will inspire someone to figure out how to make those robo-eye and, if so, I’ll be the first one whooping it up -talking about ‘how wrong I was’ - but for now blind is blind. Boom. Done. Or so I though, until my vivid T-bone dream.
I suppose somewhere, locked away in my heart of hearts, is the tiniest whisper of a wish that one day my boy will be ‘normal’. That’s the deepest divide I feel from the parents of perfectly formed children and it’s something that they honestly can’t even begin to fathom. My child is starting out life with a huge handicap. If life were a race, it’s like he got handed a 20 kilo boulder at the starting line while all the other kids got a feather. I don’t often let myself think in those terms, but it’s true and there is nothing I can do about it except make my peace, and I have. Well... at least while I’m awake.
But my crazy, late-night-sushi dream got me thinking about another group of parents. To these folks, my boy is the one carrying the feather, because their children can’t walk to the runners mark. I’m talking about the parents of children with multiple disabilities and the blindness that so often accompanies their child's primary diagnosis. These brave little ones have so much working against them as their parents stand behind them lifting them up as best they can. These parents are absolute warriors.
I’ve had the privilege to get to know one of these parents. Her name is Amber Bobnar and she’s and her son Ivan are - respectively, the founder and the inspiration behind Wonderbaby.org. Their story is not mine to tell, but I can imagine that Amber doesn’t always appreciate this little blog of mine because my problems are feathers in the face of her boulders and I couldn’t even imagine the depth of her emotional basket (though I wouldn’t be surprised if it could drain the Mississippi dry).
Like I secretly yearn for meat cooking, robo-eyes, perhaps Amber occasionally wishes that blindness was the only challenge her boy had to face. I only know Amber on a professional level, so I can’t really say how she feels, but I can imagine. Her son’s disabilities are on center stage all the time, yet somehow this woman managed to find the grace and peace of mind to take their obstacles and build a bridge. And, boy, what a bridge she built. In my opinion, Wonderbaby,org is the best resource for the parents of blind children. If you kid is blind and you haven't checked it out, do so immediately. Seriously, don't even finish reading this. Go there right now.
I think I was one of the first lurkers on that website because when Gabriel was small, every day I’d Google “Oh, shit! My kid is blind!” and for the first few years nothing happy came up. Then one fine day, after being without internet for a while, my Google search showed me Wonderbaby. It was the first time I got to interact with parents like me. I had a community who understood me, for the first time as a parent. It inspired me to share my journey through the darkness with you.
I can’t relate to Amber anymore than parents of perfectly formed children can relate to me, but I recognize that comparatively, I have it easy. Sure, things are challenging for Gabriel. He has to work so hard at things that come so easy for others. Tying his shoes for example – I drove the both of us crazy for 6 months straight trying to teach him to tie his shoes and then one day I just said, ‘Fuck it’ and bought him loafers. As his mother, I also work really hard. I spend a lot of time thinking about how to teach him to do things for himself because my endgame is clear: teaching him to be the happiest, most independent blind guy he can be. It’s a constant work in progress but most days I get to feel like I’m winning. I'm lucky.
At the end of everything, loving parents have one thing in common: we want the very best for our children. Most of you don’t have to fight as hard as I do. That’s not to say you don’t have your struggles, but you do have it easier. And there are other parents who have to fight so much harder than I do. Every moment of every day, they are fighting, advocating and giving their children a voice in a world that too often only wants to look away from them. They have to endure inappropriately painful questions from random strangers, fight with the insurance companies while going for broke paying for doctor’s visits, hospital stays and specialized medical equipment. For these heroic parents, simple sightlessness probably sounds like a picnic in the park. Like my man, Einstein said: everything is relative.