Tuesday, March 26, 2013

Thoughts on a fractured world

A little over 19 years ago I bought a royal blue, down-filled baby hat with ear flaps that did up with a snap under the chin.

It was the equivalent of today's designer baby togs. I used to run my fingers over that hat -- with the plush soft lining and bright azure shell -- and imagine my son's fresh face peeking out of it.

It was not a possibility in my mind that he could be anything but perfect, though I don't think I would have used that word. We'd worried when a blood serum test showed I had an increased risk of having a child with Down syndrome. I didn't know anything about disability. I wouldn't agree to an amnio until an obstetrician at the genetics clinic was sent in to berate me. "If you have a Down syndrome baby that'll be a burden you live with for the rest of your life," he barked. Miscarriage would be depressing, he said, but then I'd get pregnant again and have a 'normal' baby. I had an amnio and it came back normal.

He would be healthy, like the other babies in the family.

He arrived two hours into his exact due date. At one hour old, we were told he had anti-mongoloid eyes and a handful of other unusual facial features. By the next day other anomalies were added, after the pediatrician insisted on examining him alone. I had trotted down the hall with the nurse who took him, clinging to hope. She placed him on the table and the doctor slammed the door. I stood in the hall with a mom who wanted to observe her baby being circumcized. She wasn't allowed in either. When the doctor emerged, I took notes, documenting the seven things wrong with him.

Three days later we were trudging through the children's hospital in our winter coats and boots, Ben swinging in his car seat, trying to find the hospital photographer who would take pictures of our son's 'abnormal facies.'

That darling little hat the colour of the Mediterranean sea -- too large for him to wear -- sat on a shelf in his room. It seemed to taunt me.

I just rifled through our photo albums and I don't have a single picture of him wearing it.

When I drove home today I couldn't help noticing the teenagers hanging out on the corners, on their way home from school. As I turned onto our street I saw the preschool twins up the road playing hockey. There are three healthy kids in that family. Just like the family across the road that moved to France: they also had a set of twins and one singleton, all healthy.

The long-boarders with loud logos on their shirts were already on our street, careening down the steep hill with the wind in their faces. The girls with long hair stood on the sidewalk, ready to yell "car." I remembered playing for hours on our dead-end street as a kid, returning home with that dirty, salty smell on my skin, spent.

An hour later Ben and I walked down our stairs, hand in hand, he wearing his shoe with the big lift, in loose track pants, because he doesn't fit standard sizes. What does he think when he sees these middle-school boys here everyday, I thought, together, roaring down the street?

What do they think of Ben? I've never bothered to notice if they look, or how they react.

Ben was going to a bar with a couple of his workers and their friends, who wanted to take him out for his 19th birthday. Because he's the size of a six-year-old, I packed his passport for ID. 

"Do I get to go out for a beer when I turn 19?" asked my 14-year-old son, incredulously.

"Uh. Yes. If you want to."

"What about Lucy. Renise? Will she go for a beer when she's 19?" 

"I guess that'll be up to them. But probably."

As the older brother, Ben has never been able to trail-blaze with milestones. I've never told him that he'll never drive, and he's never asked, except for the time during his Life Plan event when he said he'd like to learn. And be a zookeeper, or a soldier, have his own house, a girlfriend, and a family.

Oh, and travel the world.

It was a blue-sky event, so we didn't discuss the likelihood or practicalities.

When I was 19 I'd just returned from a year in London working as an au-pair, and began university. 

Ben isn't able to walk to the store alone. He's never expressed his thoughts in speech. Ridden a two-wheeler. Done hand-stands in the pool. Made a crank phone-call. Kissed a girl. Talked to a friend on the phone.

He doesn't have any friends at school. He did in elementary school, but they all grew up and moved on.

"I feel sad about Ben," my husband messaged me during the day. I'm sure he was thinking about what he was doing at age 19.

After dropping Ben off for his trip to the bar, I lay on a table with my hand and arm (recently freed of a cast) stuck with long pins, listening to classical piano and the persistent tick of a clock, while a figurine of a Chinese girl in a blue cape with a white fan, black hair and blood-red lips gazed down at me from a shelf.

I tried to stop the thoughts I was having, the politically incorrect ones, about disability. When Ben was younger, I didn't want to hear about families like ours, families whose children hadn't 'overcome' their disabilities. 

He's our world. But we can't give him the world we imagined for him, not a fraction of it.

Did we not try hard enough? Did he not?

Ben went to the bar at 5, and it's now dark, 8:45. I thought we might get a call for a pick up, letting us know that the event was too much for him.

"Is Ben coming home late from his first brewsky?"

"I don't know. Maybe he's playing a game of pool."

"Pool? Ben's playing pool? He's going to have a hard time waking up tomorrow."


Hi Louise,
Birthdays are so hard aren't they? I think they just bring the milestone's to the forefront. I hope Ben enjoyed his 19th in his own special way.

My heart both aches and rejoices in this life you've given him and that he's chosen. Happy Birth Day to you.

Happy birthday Ben! I'd love to hear an account from Ben about his 19th birthday - I'm sure he really enjoyed it. If I've learned anything from my daughter, being "typical" is nowhere near as important as being happy. I hope Ben had a great day!

Beautiful piece, Louise. We always say "love is enough" but it is hard when we know what is also missing. I am so glad Ben got to do such a "normal" thing for his special birthday!!

"Pool? Ben's playing pool? He's going to have a hard time waking up tomorrow."

This sentence says it all for me. Its a question that you could be asking about ANY child, and the effects of staying up late are the same for most people. I know the realities are totally different when it is a child/young person with disabilities, but reading that last sentence makes me feel positive. Would Ben want the things you had initially imagined for him?? So do you need to feel like you haven't tried hard enough??

I hope Ben had a great time and met new people and that he is ready for his next beer!! HAPPY BIRTHDAY !!! :)

I thought I was done with grieving about a week after Jess was born. Then, when all her friends headed off to university and I went through my own midlife crisis and my dad died, and our minister left our church... well, the grieving began again. A bit. But not until I let myself name and hold the bits of grief, as you have so beautifully done her, did it have the power to let me (and us) move on to create that unknown world filled, perhaps, with beer suds and pool cues!

So. When did he come home??????

Thank you everyone! I'll be writing an update.

Ben likes beer! I never thought I'd be celebrating the fact that one of my kids was tipsy. More to come!

I love the images of him drinking beer and playing pool!

Sounds like a great birthday. Looking forward to the follow up.

Congratulations on his 19th birthday, Louise. The world we were 'promised' is a false one born of ridiculous expectations. As you know there is no 'less' here, though everywhere you look would seem to indicate otherwise. 99% of existence is hidden from us, some see more and that's what we see in our children.

The event didn't have to be "too much for him." Why? Because he had people who care about him. They made sure that he was safe and having a good time. That's what friends do. While Louise writes that Ben does not have friends at school, (something that needs to change), it sounds to me like he does have people in his life who he can count on, who enjoy spending time with him, and so on. These people are his friends. I think they are lucky to have Ben as their friend. It seems that Ben would be a great friend to have. Happy 19th birthday Ben!

"Ben likes beer! I never thought I'd be celebrating the fact that one of my kids was tipsy." LOL. Louise, you always crack me up and inspire me as well. You echo the thoughts and feelings we all have and iterate how no matter how much time has passed, it doesn't get easy. Thank you for a great piece, again.