At Least Half a Boob, I'll Have You Know

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Her eyes upon your face.
Her hand upon your hand.
Her lips caress your skin.

It's more than I can stand.

Why does my heart cry?
Feelings I can't fight.
You're free to leave me,
But just don't deceive me
And please believe me when I say

I love you.







Inspired by the beautiful music of Moulin Rouge.  And because there've been entirely too many clothes around here lately.

Le Shit

Tell me I'm crazy. Tell me this is all in my head. I won't believe you, but empty reassurances would be welcome anyway.

I had really high hopes sending my baby into this surgery. I wouldn't have done it if it wasn't necessary and if I wasn't confident we'd see the 80% improvement we were shooting for. I wouldn't have done this if he wasn't in danger of losing the vision in his right eye and I wouldn't have done this if one of the top craniofacial teams in the world told me that we'd likely see a high degree of success with this relatively simple surgery and could therefore avoid major facial reconstruction.

But the thing is, I don't see 80%. I don't see 70%. I don't see 60%. If I'm generously estimating, right now I see about a 50% improvement. Observe.

Taken in the hotel the night before surgery.

Taken at home, four days after surgery.

It's obviously better.  But for the trauma of a four hour surgery, two days of blindness, and continuing pain and severe light sensitivity, is it enough?  I don't think so. 

Today, at four days post-op, his eyes are half open.  He holds his chin high in the air and looks down through hooded eyes to protect himself from the light.  Even with every drapery closed and every light off, he often wears sunglasses in the house.  For every hour he has his eyes partway open, it seems he has to keep them closed for two.  He's still in pain.  This would be so much more tolerable if the outcome was better.

He was in surgery for nearly four hours.  These procedures typically take an hour and a half.  He had six muscles and two optic nerves operated on.  Most children have one muscle or nerve operated on.  He had both his eyes done at once.  This too is atypical.  Again, all of this and the resulting trauma he experienced (and is still experiencing to some degree) would be so much more tolerable if we were seeing a drastic change. 

We go back to UCLA in three weeks but in the meantime I've emailed the doctor a bunch of pictures and a bunch of concerns.  It's clear he'll need more surgery and while that's something we knew all along, I'm now afraid that we won't be able to really fix this issue without the facial reconstruction they tried to talk me into last year.

I hope I'm just borrowing trouble here, but I know in my heart of hearts I'm not.  I wish there was a task I could perform or a check I could write or an appeal I could make to lift this burden from my baby and bring it onto myself. 

God, how I hate this.

I Don't Like This.

I keep waiting for the surgeons to call me and say, "just kidding!" but my phone isn't ringing.  Maybe it's broken.

I don't like this.  Stomping my foot isn't helping.  Whining to my mom isn't helping.  Even reading so much about the procedure and anesthesia and recovery that I could practically do the thing myself isn't helping.

I just don't like this.

And I don't want my baby to have to do it.

Pediatric Surgery is Bullshit.

Every doctor on the surgical team (there are three) has gray hair, so that's good.  It's not so gray that any of their hands are bent or wrinkled, but it's enough that each of them has specialized in pediatric ophthalmology or pediatric craniofacial orthopedics for at least as many years as I've been alive.  I doubt I could allow anyone to operate on my baby's beautiful eyes if he didn't have at least salt and pepper hair.

We are fortunate to live where we do so we have access to some of the top specialists in the world.  They've all done this thousands of times.  It'll be just another Wednesday for them.  The first children they operated on surely have children of their own by now, and so while they say my son's is one of the most severe cases of strabismus caused by craniosystinosis they've seen in their careers, they're confident that everything will go smoothly.

But though they've done this countless times, I never have.  And while they've operated on endless pairs of eyes, they've never operated on these, the most important eyes in the world.  I made those eyes from scratch, you know.

We've cycled through many doctors, tried many treatments, crossed our fingers and hoped and prayed, but there is not, unfortunately, a nonsurgical cure for his condition.  In fact, the surgery itself is noncurative.  He will be better; he will not be cured.  He'll need more surgeries.  It's likely that eventually we'll end up back with the entire craniofacial team discussing the merits of facial reconstruction.

But for now they will repair six muscles controlling his eye movement; three for each eye.  They will fix the fourth optic nerve that prevents his eyes from tracking together.  They say his condition will improve by as much as 80%, which would be phenomenal. 

The doctors explained all of this to me just as if they were telling me what they planned to eat for dinner.  Just like it's routine, just like five year olds having major surgery is in any way acceptable.  Just like I wouldn't crawl naked through broken glass and set myself on fire if it meant he didn't have to do this.  Just like I wouldn't trade everything I own to be able to take his place.

It's not routine.  It's not normal.  It's necessary, but it's not okay.  I made those eyes from scratch.

A Perfectly Rational Drunk

Jean Marais.  Moan.

I've spent most of this weekend swimming in a pool of gin which has been pretty fabulous except when I achieve the kind of drunk where I weep over things like Neil Patrick Harris being gay and Jean Marais dying in 1998 so neither one will ever fall in love with me.

And I was having a hormone essentially all weekend which, on top of the drinking, added up to a lot of watching La Belle et la Bête and eating my weight in chocolate.

If I keep going this way it won't be long before the fire department has to cut me out of my house and load me in a whale sling in the back of some giant truck and hose me down with water on the way to the ocean to free my big fat Willy ass.

Christ.

I don't really know where I'm going with this except going through menopause twenty years before I'm supposed to isn't much of a thrill, though I wouldn't have a ute again for all the coke in Columbia either, so.  I'm basically just epically unsatisfied no matter what.  I'm also unsure of whether the coke/Columbia reference was correct.  I never google that shit though, in case I'm ever erroneously arrested and they seize my laptop.  I always go to the library if I need to ask google how to kill my husband and get away with it.  And I sign in using the name of this bitch who spat gum in my hair in seventh grade.  She's the one who should be arrested.

What was I talking about?

Go home.  Not sexy.

Oh yeah.  Neil Patrick Harris is gay.  I was the last to fucking know that news.  I've known a good six months now at least, but sometimes the sorrow over the whole issue comes creeping back up when I'm in the gin.  I can compete against other women because, hello, I'm an Incomparable.  But I can't fight nature.  Stupid fucking nature.  I don't know why nature couldn't have made that overrated tool Ryan Gosling gay.  He's foul.  If it were up to the two of us to repopulate the Earth after the apocalypse, the human race would snuff right out.  He is exactly zero per cent appealing.

Anyway.  I'm obviously a perfectly rational drunk.  And now that I think about it, Neil Patrick Harris is too skinny anyway.