Beginning in 2008, I wrote a column called Long Journey On A Short Bus for Imperfect Parent, about what it’s like to be the mother of my youngest son Eric, who has Down Syndrome. Special needs parenting is a hard road. I don’t pull amy punches.
Support Groups – Hah!
Eric goes to preschool. The day a year and a half ago that he first got on his bus, the short bus, I cried. He was my baby, my youngest. He was barely three and I had carried him his entire life. I breastfed that kid for over two years. We were inseparable. I knew everything about him. I signed to him, played with him, did therapy with him. I spent my days for three years trying to make him more. More appealing, more communicative, more healthy. Just... more.
Saving The World
When Eric was born I used to talk to him all the time. I coined the term “heart-talk” and we’d have long conversations in my head and in my heart. He would tell me things about his world and tell me not to worry about him, that he’d be okay. He was very very small and wasn’t thriving well for a long time but this tiny boy would stare solemnly into my eyes and tell me, through this “heart-talk”, not to worry.
Outside The Box
Eric goes to a special-needs preschool four mornings a week. Other than some cryptic hastily-scrawled daily notes on what he did that day (story: check; snack: check), I have no idea what goes on there. I figure that’s between Eric and the school. They seem willing, thrilled even, to take my son for fourteen hours a week.
The Club
Having a kid with special needs automatically grants you membership in a certain club. Out in public, parents in this club meet eyes over the heads of their children, allowing a glimmer of understanding to pass between them. “I know,” that look says, “You’re not alone.”
The Death Card
Every parent plays this game. I did, and not just with Eric. I call it Baby Monitor. You know that game? You lie awake with your ear glued intently to the monitor; your baby is in the next room, or downstairs. You’re listening for the regular noises you’re used to hearing, the sounds of breathing. When the sounds grow faint, you could go down and check but instead you play macabre mind games: what if he’s not breathing?
Perfect Birth
It was going to be the perfect birth. Under soft gentle lighting, bathed in quiet contemplation of the perfection of this tiny soul we were welcoming to the planet, my son Eric was going to make his appearance. Everything had been planned: the warm-water birthing tub, the midwife, the music. Everything was going to be just right, down to the last detail. Everything was going to be perfect.
An Uncertain Future
But as much as I want Eric to be able to function independently one day, there’s a chance he may not be able to. For every kid with Down syndrome who goes to college there are thousands who don’t. Down syndrome, like autism, is a spectrum. No two people with DS are alike. And I can’t stay in a state of denial about what Eric’s future may hold.
No Road Maps
When our kids are born we already have their lives mapped out. We can’t help but do this. We imagine them walking, talking, playing, growing up. So sure, things change along the way, but for most of us those basics are pretty well covered. Walk: check. Talk: check. We know what we can count on. But when your kid has special needs it all goes right out the window.
Need A New Kid?
Eric would be a good addition to any family, maybe to yours. He gives hugs any time he’s asked, using his entire body to hug with abandon. You haven’t really been hugged until you have been hugged by Eric. He also knows everyone’s name (even if he can’t say it in a way you understand), and doesn’t mind always coming in last for every race.
Off To Never Land
Eric is a metalhead. “Enter Sandman” is his anthem. Give him a mosh pit and a Bic lighter, let him grow his five-year old wispy blond hair into an appropriately shaggy mane, and he’s totally there. Groupie. Fist-pumping. Heavy metal makes him come alive, the big bass vibration somehow sustaining him, infusing him with energy way beyond his cognition, taking him to a level of simply being.
Retarded
Go ahead. Call my kid retarded. I don’t mind. No, that’s not a challenge, go ahead call my kid retarded I DARE YOU. (And then WHAM! Off with your head!) It’s not a trick. It’s not. Really. It’s … an invitation. Retarded. We say that word while conjuring thoughts of kids who drool a little, their slack jaws a symbol of the blank minds we imagine inside. The short bus. Special ed. Less than. Not as good as. Not, um, normal. But what is it really? Retarded. Slow. Slower.
Radar
I spot them, the people with Down syndrome, a mile away. There’s something about them that’s instantly recognizable to me, something in the way they hold themselves or the way they look at other people. It’s like they are my son Eric, just in different bodies. He’s a five year old boy but I still see him in teenage girls and indeterminate-aged men. I see Eric everywhere.
I have Stage 4 cancer. Doctors have little hope and little to offer, so I had to take my healing into my own hands. Luckily, my soulmate is a break-the-rules warrior, so we created a radical healing program. My life will never be the same.
This time I'm living life like I mean it. No more tango somedays — living like a wild goddess starts now. I'm already the Cancer Goddess.
Next stop. Wild Goddess Life.
