Okay

The day he died, I wrote that I was not ok. That was true then.  I looked at the post again today.  I said that I didn’t even know what ok looked like anymore. And I think that’s exactly it.  In this brave new world of dead children and broken lives, I do not know what it means to be ok in the same way.  I’m still not quite sure what a new, post-James emotional neutral looks like.  There was a time when I could wake up with some regularity and predict the contents of the day.  James’ death removed the axis point around which that settled world revolved.  The re-shuffling of the moving parts without their center of gravity has proved a sloppy affair, beset by a tendency to take two steps forward and three back, compounded by the fact that I’m not always even sure which direction is forward and which is back. 

Perhaps that’s why I hate when people ask me that question.  Usually I brush it off; it’s a rote question, the kind that you ask with no real expectation of meaningful dialogue in return.  I should know, I’ve been guilty of doing the exact same thing.  In fact, that’s probably why it bothers me more than “How are you doing” or something similar.  “Are you ok” is my own preferred platitude turned back on me.  The trouble is when people ask me it irks me- I want to ask them how they’re defining ok.  Does ok mean that I woke up, showered, and was productive today?  Because if so, yes, I’m ok.  Provided you refrain from putting up pictures of him and talking about how he got sick and died, I am unlikely to burst into tears during the middle of our conversation.  Does it mean that I am capable of laughing, making jokes, and even having fun?  Then yes, I’m ok.  That does happen, and I’m glad for it.  Does ok mean that I am now untroubled by the fact that my infant son died of brain cancer? Because I am definitely not ok about that.  I am whatever you would describe as the opposite of ok about that.  I do not expect to become “ok” about that. 

A few months after he died, a friend I hadn’t seen in a while asked me that question.  For whatever reason (probably because I knew I could) I went off on him.  I broke out the usual sarcastic barbs.  “No, I’m definitely not ok. Remember how my son died? That was pretty not ok. But if you look past that? Yeah, I’m doing pretty awesome.”  His attempts to apologize just encouraged me.  “You know what? Don’t be sorry. I’m so glad you asked. I was really looking forward to an opportunity to talk about the defining tragedy of my life with you in advance of tonight’s showing of Moneyball. Can we get some drinks first though? I don’t want to miss the previews.”  In reality of course, he was just trying, and happened to catch me at a bad time when I’d heard the question many more times—and much less sincerely—than I needed to.  I apologized later.  Far more troubling was that I didn’t actually know the answer to his question, or any time someone asked.

And that’s the strange thing.  Because I still don’t know what “Ok” looks like anymore.  I know what it used to look like, the sort of bland neutral that it represented nothing in particular, but I do not know what that means for me now.  I am not the person I was before James died.  I’m working out what ok means, because any definition must include what happened.  It’s impossible to bury it in some kind of neutral way.  In some ways, that has been the most difficult part about losing him, co-existing with the fact of his death and resisting the urge to drown in it.  Recognizing that it’s always there, that ok is never going to mean that everything is fine because James is not fine, is a challenge.  Whoever I am now cannot escape what happened.  I can and do live with it, but I’m not going to suddenly be fine with everything that happened.

Of course, this doesn’t mean that I’m better about what happened than I was a year ago. I am much better now.  I find it easier to think of all of the good times with James, and there are so many wonderful things to remember about him. He was a very special boy that I was and am honored to call my son.  We were blessed to have him. So I’m doing better.  But I’m still working on what it means to be ok. I like to think I’m at least headed in the right direction.

Thank all of you for your continued thoughts and prayers.

Anniversary

This is a picture of James as he was the day before he died and on the morning he died. Peaceful, sleeping, and surrounded on either side by someone who loved him. He's adorable. He always was. 

One year ago today, we said goodbye to James. When I think of it, even now, the memories are crisp and perfect. Too perfect. How could it have been a year ago? I remember a thousand tiny, horrible details I'd love to forget that rattle around in my mind, accusatory. I have read of other people who forget the details of the day, whose minds shelter them in some sort of protective haze and render the horrible moments less clear. I am envious. When I think of today, those details are the kind that come to mind first. But they shouldn't be. They represent a fraction of James' life and not even the most important parts. He must have laughed for at least a full day, for instance. Smiled for longer.

I cannot believe an entire year has passed. It seems so much quicker. It seems like he was just here yesterday. The last day seems most vivid sometimes, but that's a phantom, a trick of the mind. The last day is just a milestone, even as the details that run through my mind are punctuation marks to the end and much less significant than the end itself.  Today, I will try to remember all of him. The laugh, the smile, the spiky hair. Today I will remember my son, whom I will always love. I cannot think of any better way to spend today. 

Thank you all for your continued thoughts and prayers and your support over the past year. 

Batteries

I rarely venture into his room. It remains just as he left it, transfixed in a state of perpetual infanthood. Toys litter the corners, gathered up haphazardly and scattered without reason. His changing table set up and waiting, a stack of diapers waiting unopened by the cushion. After he died, I spent a night or two on his rug, T-Shirt knit and surprisingly comfortable. I thought the sensation of being there might have some kind of independent value, might keep me closer to the memories. I suppose I could have used the bed- his crib is a bed, purchased with the express purpose of expanding one day to a full size and accompanying him through childhood and into adolescence, but I could not bear to do that. In any event it would make for a macabre guest bed.

His room has existed in stasis now for longer than he occupied it. Everywhere, there are reminders of what should have been. His closets and drawers stuffed to the gills with 12 month and up clothes purchased on sale and off season from the year before. On the ottoman accompanying his rocker, the one I sat on while Kara and I alternated holding him as he lay dying, rests a coordinated 12 month outfit, "Here Comes Trouble" written in playful letters across the front. If only that were true. The tags are still on it. It was marked down to under ten dollars. A bargain, though a pointless one. On top of his chest of drawers, the plaster moldings of his hands and feet. One was done at the hospital and one at the home, I cannot recall which. I still cannot figure out how to take the impressions out of one of the molds, and so they sit, as I am too afraid to try and break them.

I can never make a decision about what to do about any of it. To make one decision, say, to give away the unopened toys or the brand new clothes, leads inexorably down the path to making hundreds. What do I do with this room where my son once lived and died? What do I do with his books? Which do I keep? How do I choose? The same is true of all the toys, of everything in the room. And so I make no decisions. To acknowledge how inessential each piece is  represents some kind of ultimate surrender for which I am unprepared. It means acknowledging the obvious- that James has no use for them, or for any of the artificacts he left behind, each preserved only for us.

I went yesterday. I sat in his chair, and for some reason turned to look out the window, away from all things James. In the antique crib between the chair the window sat a load of toys, overflowing the crib. On top was his plush dog toy. The zombie dog, which always went off with one of its phrases at the most random time. I hated that toy. We bought it at Target with a gift card. I have no idea why I remember that. Amused, I go to press one of the buttons, to see if it's still obnoxious. There's no noise. I try again, and belatedly realize the batteries are dead. It's been sitting unused for a year. Of course they're dead. The realization starts a minor panic in me, an unwillingness to believe it's been that long, that the toys and the rest of the items kept so carefully in stasis are beginning to fail. I immediately check the rest of his electronic toys. His firetruck still works. His piano rings loud and clear. The mobile won't work on the first try but it comes around on the second. I can't find his laptop and for a moment wonder if I buried him with it, but it's buried beneath some other plush toys and obnoxious as ever. One of the pieces of his activity mat no longer works. It's the last toy I check and for some reason I lose it, clutching the silly dog to my chest and sobbing.

Sometimes I am better at this than others. Sometimes I am more ok, and the emptiness seems like an appendage, a burden but not an unbearable one. Other times, like then, it is the only thought I can hold in my head. The rest  of my thoughts grow small and do not have the narrative force to dislodge it. For some reason realizing that the batteries on his toys- even toys he didn't really like- are failing brings home to me just how empty the room is, how pointless. That is a hard thing to know. Afterwards, I sit there for a while, taking it all in.

The more time passes the more transparent my defense mechanisms become. I am doing better, but lately everything seems fresher. Whether it the concurrence of dates or seasons, the memories seem clearer and closer. The dead batteries are just another reminder of how long its been, and what is missing. I can't imagine if he were here I'd ever have allowed that to happen. But he's not, so I did. This month is hard, and it's realizations like that that drive it home. I miss him, and sometimes all the more when I realize how long I've missed him. Still, I tell myself that next month will be better, and next year will be better. I'll get around to the room eventually. The batteries might give out, but that doesn't mean James is or ever will.

Thank all of you for your continued thoughts and prayers.

Independence Day

This is James from the day after the Fourth last year. I'd post one from the Fourth itself but I've posted all of those, and I hate to do repeats if I can help it.

James was sick on July 4th. He'd been sick the day before, throwing up despite a steady stream of zofran. Oral never worked, he just threw it up. Emesis, the doctors called it. Very clinical, much cleaner than the reality of baby vomit streaked with red highlights from baby tylenol (or was it the steroids?) covering every article of clothing on your person. The day started at home. We dressed James for the parade in a red white and blue madras outfit in which he looked completely adorable. I remember being excited the night before to finally do something normal with him again, to get him out of the hospital and into something approaching a routine. It all seems so silly in retrospect. Instead, James returned to the hospital less than a day after he left it, and the only fireworks he saw were those spied in the corner of his hospital room window. The next time we left the hospital would be our last.

I went back and looked over my posts from that day last year. It surprised me what I remembered and what I forgot. I remembered the parade, the vomit, and the frustration at going back. I remembered the almost routine intake procedure at the ER, which for children with cancer serves at best as a staging area for fluids on the way to the floor. I did not put it in the blog, and I cannot remember when it happened, but one of the nurses there had trouble accessing his port. They wanted to do an IV, and we refused on principle. You do not have a surgery to provide intravenous access and then put in IV. It bothers me that I cannot remember which visit that happened on, though I can remember the nurse's face and the exact needle gauge James' tiny port required.

The things I forgot were mainly medical. The exhaustive effort to find a neurosurgery doctor to visit James on the holiday. The late night call we received from the neurosurgery resident to placate us enough to get to the next day. He was in the middle of a trauma-it was the Fourth of July after all. I remember James' eyes fluttering and complaining about it, a prelude to his seizures. I remember the particular nurse I describe but cannot for the life of me remember her name. Blond. Pony-tailed. Whitney? I think it may have been Whitney.

I wonder if I'd have remembered the medical details more if he'd lived. If he'd lived, there might have been some point to remember the particulars of his care or of my various frustrations with his doctors. It might have become relevant. If there had ever really been a chance for him to live, that also might have been something worth remembering. There was not, and so the memories become inconsequential, chaff separating the reality of his diagnosis from the inevitably of his death. The memories that rise to the surface are those more firmly rooted in him, what he wore. What I wore. I'm wearing the shirt tomorrow. The feel of him lying on my chest in the ER bed, my hand resting on his back. I very badly miss holding him.

The other thing that surprised me about the posts was how soon they were after he was diagnosed. July 4th was Day 12. We only had 24 days with him after he got sick, less than a month. In my memory it seems like a much greater gap, an elongated period that occupies far more time in my mind than it ever could have in reality. Of course, I spend more time there than I do any other 24 days day period in my life, so I suppose that makes sense. The details may fade with time, but the sensation remains fresh.

In an odd way, the priority of the memories that remain convinces me of how right the decisions I made were. I struggle with that of course, guilt has a funny way of occupying the empty space grief creates, but I remember James and being with him more than anything else. And of course that was always the most important thing. The rest could never amount to more than details.

Thank all of you for your continued thoughts and prayers.