#apertowl

My husband is a regular motorcycle driver. I love it, and I own my own little motorbike as well. I haven’t been on it in 1.5 years, but I am really hoping to be able to get back on it next Summer once our son has gotten a little bigger and things might be such that I can take an afternoon off and take a ride.

In any case, as I am writing this, my husband is fulfilling one of his lifelong dreams: driving off into the, almost literal, sunset on two wheels with nary a care in the World.

In reality, it’s a 3.5-week trip that has been planned down to how many bathroom breaks he gets every hour but, his sole responsibility is following his GPS and getting to his places more or less on time. He had to go alone, as carting a 9-month-old along on such a trip would be heinous, and leaving him behind would be nothing but a guilt trip on one of us.

As he took off, it occurred to me I could do the same. I decided to hop on a plane (two of them, actually) and head south of south of the border and visit my family. I come from a small family, but we are like a sponge and soak up those who strike up a conversation with us and before they now it, they too, have been turned into family. This means that my son now has to stand as grandchild for at least 5 grandparents, is nephew to at least 7 people who share no genetic makeup with him whatsoever, and is about to be passed around a small gathering of 29 people, all in attendance to see and goo and ga over him.

It’s been a very phenomenal experience so far, since one tends to forget how sheltered small communities can be. In our small town, we have published letters (the dubious advantage of being the local news providers) and our friends have organized fundraisers. In general, out of one thousand people living in town, about 950 recognize our son and do not think twice about staring or making a fuss over his physical differences.

The same has been happening with all of his, genetic and adopted, relatives. He is a social, happy and extremely easy going little dude. He eats whatever you put on in front of him, and only turns fussy when is tired and ready for a nap. It’s won him fans, cuddles, toys and the privilege and pleasure of being carted around by anyone he smiles at.

This idyllic reality crashed down around us (mostly me, he is still extremely unaware of how people can perceive him) when we were in the store the other day.

The thing that was most gut wrenching is that it was children, not a grown up, who were pointing the finger and whispering about him to my face (isn’t it always children who can be the cruelest? That’s part of the reason why their responsible adults really need to keep an eye out and teach kindness). There was a girl and a boy, about 7 and 10 respectively I would say. The girl kept using the shopping cart as her personal monkey bars and I really hope she didn’t topple over because that would hurt. The boy was going on and on and on about what a corndog is.

Whomever was their adult (whether it was their mother, aunt or nanny, I have no clue. Their indulging tolerance of her makes me question any of those choices.) was more focused on nagging the deli lady about the kind of ham they had than keeping an eye, or attention, out for her two charges.

The girl stopped her monkeying around and stared at my son (I was carrying him, waiting for my own mother to pick up her order of ham). She looked him up and down and then called over to the boy. I couldn’t quite make out everything she said but I did hear her whisper “Look at the baby that’s so weird!” and she laughed. The boy, whether out of a preteen nonchalance or because he did not share in the girl’s joke, looked over and shrugged and went back to talking about corn dogs.

The girl gave me a furtive look and laughed again, then went back to climbing the cart.

Their grownup didn’t even look up. She sent a half hearted, “Girl, stop it.” (which was thoroughly and very efficiently ignored) and continued to argue about the ham, despite the fact the lady at the deli had already asked her to wait her turn.

It’s funny how long it’s taken to write this, considering the actual event took only a few seconds.

I couldn’t help but hold my son tight to me, as if that would protect him from anything. I glared at the girl and she gave me a defiant look and went back to her business of misbehaving.

I didn’t tell my mother what had just happened. I don’t need to wake her inner dragon as I’m sure she would have slapped both girl and adult but I felt utterly defenseless. I had no idea how to confront a child, or what I could’ve said to keep my son from harm’s way.

He is still only 9 months old, so he doesn’t realize the stares and looks he can get but, I also can’t help but wonder how long that is going to last and whether or not I should be “practicing” the best way to stop, or at least try to redirect, the un-kind that my son will continue to face.

At that moment I felt ridiculously naïve, as if I had been stupid and senseless for thinking I could bring my son out into the wide World and think it would be OK.

By the time we got home I had left the self-pity behind and found it substituted by a quiet sort of rage and battle cry. Why would I NOT be able to bring my son out into the wide World? Why would I, and he, have to stand aside?

My inner dragon is starting to stir. I’m not in favour of letting him out but I feel him getting ready to strike and I don’t think that’s fair either.

In any case: I’m conflicted.

At least for now: we have retreated into the safe space of family and friends.

There’s a lot of things that scare me.

The Boogey Man.

Sharks.

Ghosts.

The sense that I will never be good enough.

Debt.

Credit cards.

That clown from “It”.

The dark.

The list is much longer than that and while some are legitimate fears, I am not so proud to admit that many of them are irrational and childish. Oh well, not much I can do about that now…

What I can proudly boast is that while there are many things that scare me, not many things faze and shock me. This, as I have quickly learned, is generally a good thing as I am the mother of a child who leaves people wondering (at the best of times) and flat out staring and gawking (at the worst of times).

I have to admit, up until recently, his cuteness (not bragging, just a fact) more than made up for the fact that he does not look like a normal child. This, I think, has helped all of us cope with his condition a little better because we already worry about so many other things on a day to day basis, there really is no room to be worrying about pointing fingers and rude stares.

Well, my little bubble of protection had begun to look a little worse for wear recently and it was on a routine trip to the local store in town that it popped into oblivion.

I walked in and the owner was excited to see me and my child. We were standing by the door, chatting about how well he looks and how his hands (now that he’s had his fingers released-I like to think like a mighty Kraken-there was much ado about his new fingers) look good and how they are going to work now and what I hope to see in the future for progress and physio, etc, etc. This is a conversation I have had many times, with many different people, but there is always a certain joy and tongue-in-cheek when I’m discussing my child’s differences with friends and people I care about. This particular individual, is someone I am fond of and thing very highly of, so I was excited and she was excited and my kid was bouncing in his carrier, all smiles and babbling.

It was a picturesque moment, until I felt…something.

It was like a bit of a shade, like someone turning off a light when you are not ready yet.

There was a man standing next to the door, clearly listening in. I looked toward him, all ready to keep the conversation going (I’m a big supporter of asking and answering questions, so I try to face strangers and encourage them to come close; my child will have to live with the stares and looks all his life so he might as well see that you can control the situation if you are open and honest and willing to talk) but I quickly found myself silent.

For the first time ever, I experienced what I knew would come: pity behind the stare.

The man didn’t know what to say, neither did I.

There was an awkward silence and then he said it, “He’s really been through the ringer, huh? Does he have much more to go before he gets back to normal?”

I’m not sure if it’s a survival instinct, but something in me kicked in at that moment. I laughed.

My kid, I explained, doesn’t know any better! He’ll be fine no matter what else is done, or not!

The stranger looked at me and gave me a half smile, said something like, “Atta girl!” and left the store.

The truth is I’ve been thinking about that man for a number of days.

Yes, my child looks different.

Yes, it freaks people out.

No, he does not need pity.

No, he does not need to “get back to normal”.

My bubble world was sent for quite the spin before popping.

My child is no longer safe from the pity, the stares, the awkward comments. He is no longer simply “such a cute kid!”.

I knew this day would come, I knew I would have to fight these battles.

I’m not ready for it. I’m not sure if I ever will be but I do know this: I can’t let my child see that uncertainty. I can’t shield him from his reality, but I can make sure I face people head on, I look them in the eye and, without anger, or fear, or hesitation, I keep on living life.