No one tells you about the maddening and mundane aspects of grief.

Or maybe they do but I never listened before because I had no idea I’d have to deal with losing a child. I thought that I’d experience “real” grief when my parents died – someday far off in the future when they were old and ill and it was okay for them to die. I would be very sad, yes, and deal with all sorts of emotional baggage from my childhood and read books about loving and losing and letting go, but I would be okay.

But I never thought that I would be devastated like this – that grief would stop being an abstract concept and become a member of my family.

This is what they don’t tell you – that after you’ve sat by your braindead child’s bedside for 48 hours, you come home to find out that the hospital will bill your insurance (or you, if you are not lucky enough to have insurance) tens of thousands of dollars for the privilege.

They don’t tell you that your insurance company will question the validity of the claim, wondering if perhaps your 2-year-old’s hospital stay should be covered by worker’s compensation or your auto insurance?

They don’t tell you that getting up and dressed in the morning is a major accomplishment. That you’ll find yourself watching television shows you hate or playing computer games for the first time in years because staring at flickering colored lights for hours on end is preferable to dealing with your thoughts and feelings.

They don’t tell you that putting in the effort to clean your toilet or sweep your floor will wear you out enough to require a two-hour nap.

They will say that you should get back into the swing of things, that work will be a good distraction, but they don’t tell you about hiding in the bathroom every day so you can have a breakdown in peace. They don’t mention that you’ll sit on the couch after you come home every night, unable to carry on a conversation or fill a plate for dinner or put your empty soda can in the trash.

They don’t tell you that every time you interact with someone you have to lock your grief in a room waaaaaay in the back of your mind just so you can speak coherently for a few minutes. You know, you think, that it’s GOOD to talk to people about the weather and the Super Bowl and how so-and-so just got over the flu, but at the same time you start to question your sanity because you find yourself pretending (and making it look convincing!) that the world you live in isn’t completely fucking wrecked.

They don’t tell you that AFTER you return from the real world, after all that pretending, you’ll find that you’ve so successfully stuffed your emotions into that back room that you don’t recognize them anymore. They don’t tell you that it takes hours or days sometimes to reacquaint yourself with who you are and what your life looks like now and how you are REALLY feeling and that when it all finally hits you again, it SUCKS. It really, REALLY sucks.

They don’t tell you that you will feel, quite literally, like a zombie – like a rotting, stinking dead thing that is stumbling around in a world that is too bright, and too loud, and fearfully hostile.

They don’t tell you that everyone else will just be going on with business as usual and wonder why you’re so damn touchy. Sure, your friends will make allowances for you, but they have their own shit going on and even if it’s not “as bad as” your shit, they still have to deal with it. They can’t really hold your hand 24/7, and it would creep you out if they did, and so it’s just easier for you and for them to do the pretending thing – yes, that thing that makes you lose track of reality and feel like a zombie and then have the crashing realization of your loss over and over again.

And the people that aren’t your friends? Sometimes they’ll be sensitive to what you’re dealing with, but sometimes they won’t. Sometimes they’ll be absolute jackasses about it, and give you a lecture about how it could be worse and thank goodness you had the time you did and he’s in a better place now and you’re not doing yourself any favors by wallowing in it.

They don’t tell you that you will be confronted with a very real conundrum on a regular basis: whether to punch the jackass in the face and feel the tiniest bit better or slink away muttering, “sure, thanks,” just to avoid assault charges.

They don’t tell you that living, just breathing in and out and in and out again, will become your full-time job. And that you’ll hate doing this job, even though you know, somewhere instinctively, somewhere very deep inside you, that you MUST do it.

They make being a “survivor” sound so hip and sexy. They don’t tell you – probably because they have no idea – that it’s a terrible thing to have to be, that it’s a million times harder than it looks on television, and that you wouldn’t wish it on anyone.