Taken during one of our stays in the hospital together.
Taken during one of our stays in the hospital together.

In 1907, Mary Mallon – better known as Typhoid Mary – was quarantined for the first time, destined to be shunned for the rest of her life for being a carrier of disease.  She tried to reintegrate herself into society, but ended up getting more people sick, and finally lived out the last twenty-three years of her life in confinement, on a small island in New York.  This story always fascinated me because I find her life to be so romantic and idyllic.  Oh, sure, she infected fifty-one people, of whom three died, but she was basically told she had to be alone and couldn’t be around people.  I often thought about being a modern day Typhoid Mary, surrounded by shelves of books and stacks of newspapers, maybe a computer with access to Netflix by my bedside.  Meals on trays would be brought to me, slid under a cut-out in the door.  I once saw a video of a man who spent months in quarantine while recovering from tuberculosis, and I morbidly joked about finding a way to catch it myself.

I feel like I’m in confinement myself today.  Over March Break, Quinn had the flu and was inconsolable, so I spent a week’s worth of nights in his bed, helping him blow his nose, singing to him, and soothing him back to sleep while he suffered from fevers and aches.  I had the good fortune of having him vomit on me one night.  Soon after that, Bridget came down with a similar ailment, and then Marshall had it passed on to him, which landed him in the hospital because he could not get enough oxygen into his little body.  Somehow, I felt amazing each day despite sleeping in his hospital room for nine nights straight.

Well, that has all come to an end.  It’s as if my body gave out as soon as the hospital visit ended.  I’ve been achy and irritable all Easter weekend – more so than usual.  After making it through a day of work yesterday, I’m spending today in bed, drinking copious amounts of water, taking Advil and Tylenol, and futilely calling to my two cats, hoping one of those ingrate bastards will keep my company while I feel sorry for my sick self.  So far, no luck.  I can’t even be around my family, even though Marshall has an important check-up with Dr. Forrest – his plastic surgeon – this morning at the hospital.  If he were to get sick again, that would probably mean another stay at the hospital with the oxygen hood over his head and a feeding tube down his throat.

And yet, soon – probably by tonight – I’ll be feeling better and back on my feet.  My exile is temporary.  I cannot stop myself from thinking about how Marshall will be viewed by his peers.  Will he feel welcome?

When I was growing up in Scarborough, there were almost no visible minorities at my school, believe it or not.  Now, there are East Asians everywhere in the city, but in the early 1980s, outside of Chinatown, and especially where I grew up, if you weren’t white, you were noticed.  Names were called, things were said, and eyes were pulled back mockingly in the schoolyard.  But that has changed, and even then, there were places I could go where I would not stand out.

Where is this safe place going to be for Marshall?  He is certainly going to look different from his peers.  I love to kiss his little face, and I love the way his jowls rest on my shoulder.  As he grows, however, he is going to need many surgeries, and his physical appearance will stand out.  As I type these words, I can feel the anger rising up inside me as I imagine what I went through thirty years ago, but magnified a thousand-fold.  People will stare, people will whisper, and people will dismiss him without giving him a chance to show them what he has to offer.

You don’t need research to tell you that good-looking people tend to be more successful.  There have been plenty of studies that have shown a strong correlation between physical attractiveness and hiring.  How else to explain how I got my job? (I kid, I kid.)

Right now, all I want to do is protect my little boy and to shield him from the horrors of the world.  I’m sorry, but it really is a rough world out there.  I see it every day in the school yard, at the grocery store, on the streetcar.  It’s rough for the average person; I can’t imagine what it’s like for someone with clear differences.

My heart aches when I think of the times Marshall is going to notice people pointing at him, or when children don’t want to play with him because he’s different.  I’m trying so hard not to think far into the future or to be negative.  Maybe it’s the flu, maybe it’s the fact I ate an entire blueberry pie (thanks, Joanne), but I’m having a hard time feeling positive this morning.

I know in my first post, I talked about Googling images of Apert syndrome.  It’s horrible.  The search results are deflating.  I know that surgical procedures have evolved a lot, and I have the utmost faith in Marshall’s surgeons that they will not only give him the healthiest life possible, but the best chance of feeling good about himself.

For our part, I know that as a family, we will have to learn to balance protecting him from cruelty, as well as teaching him to be a strong young man who believes in himself.  My favourite thing to do with him right now (when I’m not in ague-ridden exile) is to hold him against my shoulder.  He rests his large head on my shoulder, pressing a fat jowl to my face.  If he is only in a diaper, I can easily kiss the little fold of flesh on his upper arm.  I want to keep him as a baby forever, so he never has to grow up and see what the world is really like.  I want to hold him like this forever.  If I can’t go back in time, I want to freeze the clocks so that it’s just him, his fat cheeks, and my kisses.

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