Digital

I'm loading all of the pictures onto google. Trying to inoculate them and keep them safe permanently from the forces of the world. Broken hard drives, lost phones, and power surges. All of these are too fraught with danger for pictures of my James. Completely unable to protect my son in the flesh, I will immortalize him digitally. I will create a permanent record of these memories that cancer and nothing else can touch.






You can see him getting sicker in the pictures. There's an odd chronology. He's smiling, and then slowly becoming more distressed. He comes up in the hospital pictures at first miserable, but we're documenting it because it's a milestone- Baby's First Time in the Hospital- not because he had cancer. I still remember checking in at B6, toys in hand, joking that we were in for a long night and wondering if we should take bets on when the doctors would show up. I sometimes have a real problem taking things seriously. I never imagined we'd make our way to the PICU in less than five hours.

The pictures create an odd sort of timeline, one evolving into hell. A picture of his insurance card I sent to Kara to take him to the doctor with. A picture of him in the Medical City emergency room lying on Kara's chest, back when we were trying to take care of dehydration that was never the problem, and the least of the symptoms. In his Moses basket before we went, perhaps the day before, crying because his head was splitting apart and no one knew. I feel so guilty I did nothing to help him, that I didn't know what he was trying to tell me. In a Mavericks shirt Kara bought him from a street corner, his one and only championship. He's sick but still trying to laugh. The tumor never managed to rob him of his joy. Now the picture show that he's in the hospital, now we know. He's playing despite the drain sipping fluid off his brain- we're struggling to keep his hands clear of the wires, which he naturally found fascinating. A giraffe in hand a bright smile- never mind the the wires, the drain, or any of it. James didn't have time to worry. He loved to play, He loved everything.



Now he's had his surgery. Poor baby, but he's still so happy. He was never the same after. He never managed to get completely well from the surgery, but the tumor did. He never had the time, he wanted to, he always did. He fought so hard. I am proud of him. Prouder than I've ever been of anyone of anything. Now the port's in him and we're spiraling into the last few weeks. Days are precious but we don't know it, we're ignorant to the future. We still have hope. We still had James. Now it's too late- he's at home and in his moses basket again, but now he can't cry anymore. All he can do is rest, and wait. Now we're just clinging to hours, desperately trying to freeze time. When I think about it now I feel guilty for sleeping. I only had so many hours and I wasted at least a few sleeping, when he was still alive and breathing. He woke up the morning he died having trouble breathing, I wonder, if I had stayed up that night, would I have noticed when it started? Could I have done something? I should have known better, done things differently. I feel guilt because it's better than loss, it's easier to blame yourself than to acknowledge there's no one to blame.

So I'm memorializing all of it, every picture on my phone, in my possession, or anywhere. I will test and break gmail's limit, and after that I'll find somewhere with enough space to store it all. Physical storage, like the flesh, is too weak to be trusted. Of course the internet itself is just as impermanent, only as reliable as your connection and your power supply. There's no safe place but my mind really, but we may as well double up on them.

A few weeks ago I lost my phone. I subsequently recovered it, but while it was lost I kept worrying about it. I had everything backed up, but I kept worrying I must have missed something. What, I didn't know, but that didn't stop me. It also made me worry about the reliability of purely physical back up. What if something happened to my phone and my computer? In response I've begun digitizing.

When your child dies, you become all too aware of the value of the pictures you do have. The timeline is frozen, and your experiences are ended. Therefore each picture, and you know exactly how many there are, becomes precious, a treasure. There will be no more, and you know that each and every one is precious. Each pose, each smile, every second of video. You once took the minutes casually, watching him and not recording. Now it is all essential, it is all unique. The fear is forgetting. Preservation becomes a goal in and of itself.

On one level this is all pointless. My son is not, and was not, the sum of his pictures. Each and every day of his life he was more- a gift from God uniquely blessed. Each of those days was a gift. We were blessed to have him. We were honored to know him. Still, a certain paranoia infuses everything, a need for preservation. It's more for us of course. James has no need of it. It's just something to do. Something to remember. As with so many things these days, I'm finding that the goal isn't necessarily what you want, but what makes you feel a little better. It's not about huge victories, but small ones scattered throughout the day. There's no epiphany, just an assortment of moments that move you forward.

Thank all of you for your continued thoughts and prayers. Today marks 4 months from the day we lost James. In a few articles I've read, they've suggested 4 months is a magic number, the number of months by which it starts to make sense. I don't know about that. But I do know that we've been blessed with a lot of support, and I thank you for that.

Haze

I still remember the first time the Haze descended upon me. You'll forgive me if I capitalize it, like a proper name, something of importance, which of course it is not to anyone but me. James had died less than two hours before. The nurse from the hospice, not out regular nurse, had arrived. Our regular nurse had a pending engagement with Harry Potter, a movie I still haven't seen for that reason. She told us about it the first time we met her, huddled in an ICU room and trying to absorb the fact that this woman would be the one who came to declare our son dead after he died in our arms. If Harry Potter did not interfere. I wonder if she knew then, sharing that piece of information with us as we were trying to talk about anything but, that we had very little time left. I wonder if she knew we had 72 hours give or take, at home with him after we left the hospital. I still remember the walk from the room to the car, James sleeping peacefully, never to awake. I miss even that. In any event, James died during Harry Potter, and a backup nurse came to meet James only in death. A friendly enough fellow I suppose, though I can't imagine what the circumstances call for.

He'd left to talk with the funeral home owner who'd come to pick James up in a minivan with a car seat in the front seat, as if James would ever have been allowed to sit in the front seat. For some reason, I don't remember why, we'd put James in his crib. We'd dressed him, an awkward process that I do not want to remember, but can't not. He was lying there and for some reason I was suddenly alone, just he, I, and the crib. I'd cried before of course, long jagged sobs with my father, mother, or uncle's arms around me. We'd sat alone in his rocking chair after, and I'd composed myself enough to tell him how desperately I loved him, and how I hoped he'd see lots of friends on the other side, that if he asked my Grandparents they'd take him to get a new toy. But for some reason I felt especially isolated in those moments with him, waiting for the funeral director to come back and take him, in perfect agreement with the hospice nurse that he was dead and didn't need the crib anymore, wondering if I'd like to carry him to the mini-van. In the end I did, because I carried him into the house, and I wanted to carry him out as well. I was his father. But I didn't even know where the van was going. I'd never gotten that far.

And then it hit me. A sudden, swift haze, an edge of unreality and isolation descending over the whole scene. The voices in the house, the dozen or so odd people gathered in vigil around my son's deathbed distant, indistinct voices. To this day I couldn't tell you who all was there, or how or when they arrived. A strange disconnect emerged between us, a Haze isolating me from the rest of it, the world beyond. I often respond appropriately, I am witty, functional, even effective, but the Haze comes now and then, and I'm right back where I started, alone in his room watching him as though he were sleeping in his crib. It's an odd sensation, a curious disconnect. It's not that I'm not there, I'm just thinking about somewhere else, and everything else is out of focus, as if I'm listening to them underwater or drunk. It's not all the time. Just every now and then. Small things. Checking the mail and all the bills are to James Sikes, even though both of the James Sikes I knew are dead and gone. My Dad is Jim and I'm J. Matthew. Ten generations and I'll be the last one. If only AT&T knew. The Haze strikes me, and takes a few minutes or an hour, whatever the case may be. Like a pall descended over everything, coloring the margins with grief and deflecting the day. When it happens though, I'm right back at the crib, alone with my dead son, and I still have no idea what to do next. I'm still working on that, some days the answers are better. There are comforts- Jamie the Giraffe, adorable as ever, James' fund, the hundreds, thousands of people who have been moved by him. I'm selfish enough that I'd trade it all for another hour of him laughing.

I miss him desperately and constantly, with a sense of urgency that is completely inappropriate to the situation. So I'll give a few more hours, a few more days here and there when I'm not too busy to the Haze, and in the end it will pass, as it must. Because time will not stop, and our moment at the crib has passed. I will pray, and hope God has an answer. Eventually perhaps, the Haze will pass. I don't ask for timelines anymore. I learned long ago there's no use in bothering.

What's in a name?

I thought I'd take a minute to provide a brief history of James Camden Sikes, in the most literal way possible, by explaining how he got his name, the same one we've seen on what seem like a hundred consents and forms at this point.

As last names go, Sikes is undistinguished. The most famous Sikes I can think of are Bill Sikes, the fictional pickpocket abuser and murderer of Dickens' Oliver Twist, Mark Sykes, author of the Sykes-Picot agreement by which England and France divided the middle East into arbitrary regions we're still untangling today, and Wanda Sykes, middling comedienne. It's not exactly what anyone would call a prestigious name. There is no distinction between Sykes and Sikes other than the vowel preference of the first member of that family to write it down. The name is similarly nondescript. It's Yorkish in origin, Sike or Syke means "small stream" or "gutter" so basically any ditch with a current. Adding an s to old English words makes them genitive, so Sikes means "of the stream/ditch/gutter." How very fortunate. James is not more English than anything else either, nor am I. James, like Kara and I, is a mutt. An English-Scotch Irish-Irish-Norwegian-German-Sicilian-Croatian-Mexican-Cherokee American.

Though no one knew it at the time, James and I were both named around 1685, when the first James Sikes came into the world in Norfolk County, Virginia. The details are a bit sketchy, but this James appears to be the very first on record we're likely descended from. A third generation American, he descended from a Sikes who emigrated to Virginia from England around 1635. The earliest Sikes on record who we're likely descended from is a "male" Sikes born around 1590 in England. James had no middle name, as those did not become fashionable outside of the nobility until a century or so later. James, like the rest of his family, farmed nondescript tracts of land on the Virginia/North Carolina border, with members of the family moving indiscriminately between the two colonies. Nothing really set these Sikes, or James, apart. They farmed. They died, and for some strange reason, they named their sons James. Over and over again. One James fought in the Revolutionary War. The family took a break from Jamesing. shortly thereafter Jacob Sikes- probably the son of a James (Jacob is earliest ancestor we can get to with direct evidence- the others are circumstantial) named his son Redden (possible James Redden). Redden moved the family to the Alabama/Georgia border and then disappeared from history, lost to alcohol or some other vice. He also revived the name James.

His son, my great-great-great-great grandfather, James Franklin Sikes, emigrated to Winn Parish, Louisiana around 1850. Until my grandfather's death in 2003, there was always a James Sikes in Winn Parish. James Franklin fought for the Confederacy in the Civil War and when he came home he farmed and assumed the role of post master for the small community he lived in. When the post office demanded a name for the community, the citizens offered the name of Crain- a prominent citizen and the father-in law of James Franklin's son, James Warren Sikes- only to be told that a Crain, Louisiana already existed. Stumped, they agreed to call the town Sikes, as that's who the mail went to. Sikes and Winn Parish have more in common with East Texas than the deep south. There are no plantations, just miles and miles of rolling hills, timber, and fine red clay soil. Winn Parish voted against secession in the Civil War because they just didn't see anything in it for them. The town prospered until the turn of the last century, when a fire decimated it and drove most of the residents, including the Sikes family, to the Parish seat, Winnfield. My grandfather, who went by James, was James Edward Sikes. My father is James Edward "Jim" Sikes Jr. and I am James Matthew Sikes. There is no legacy, no inheritance, no illustrious history, just the name.

James is the seventh James Sikes since James Franklin, and likely the tenth or so overall. I was born to name my son James. Growing up, I hated my first name. I never understood why I went by my middle name, and I hated correcting teachers on the first day of school-especially when teachers shortened it Jim in an attempt to be familiar. I always said I'd never name my son James, and end the tradition with me. I wanted to be the last James. If not for my grandfather, I would have done it. A quiet man, my grandfather had a very reassuring presence, a certain formidable spirit that I always respected and loved. We spent hours fishing without saying a word. Family history meant the world to him, he's the one who put together the extensive history I outlined above. More than that, he was someone I always admired and wanted to be- and one I never had the patience to be. And so I decided to call my son James, not for James Franklin, James Warren, or any of the others, but for him. If James George didn't sound ridiculous, I'd have named him after both my grandfathers. I wanted to call him James too, to avoid the middle-first name annoyance. And so I did.

Camden is a much more recent name. Kara summered in England during our college years twice, once in 2004 and once in 2005. For the second trip, she came with me. I'd planned on going most of the year, and when we started dating, Kara decided to go too. We did the Baylor in Oxford program, staying at Christ Church college beneath Christopher Wren's fabulous spire and exploring the country- in many cases with Kara as my guide, as she'd been the year before. We loved it, I for the history and the country, she for the shopping, the shows, and the Tube. When we talked baby names, English names were favorites, particularly place names as we'd loved our time there. For a girl, we liked Kensington, Kensi for short- the neighborhood in London where Kara stayed. For a boy, names were less certain. Camden is a market neighborhood, a bit eclectic, countercultural. I've never actually been, though Kara has. She's more of a shopper. I told Kara she could have the middle name, as I was already taking 2/3 of the naming. We talked about Owen, Noah, Aiden, Caden, Colin, Oliver, Michael even Baylor, our alma mater. James' due date came and went with no decision.

Finally, Kara went into labor a little after midnight on October 29, six days late. The labor did not progress as it was supposed to- James had the cord wrapped around his neck and was sunny side up. We'd planned a natural, epidural free delivery. Kara refused to even listen to the C-section portion of the birthing class. In the end, we were rushed to a C-Section after a quickie epidural. As you can see, from the beginning James has cared little for our plans. James was a beautiful baby with thick, brown hair and beautiful blue eyes. After the delivery in the recovery room, I held the baby up for Kara before I went out to give our family the details and asked Kara "What's his name?" Drugged and bleary eyed, she blinked once and said "James Noah" "Ok" I said "James Noah" She blinked again and looked perplexed. "No, no. James Camden." "All right" I said, "James Camden." And so Jamesie got his name.

I'm not sure what, if anything, to make of those disparate parts. James has no idea and probably could care less about the history of his name or his family. In a strange way though, it gives me comfort as it makes me think of James as part of something larger, part of our family and our past. A glimmer in Kara and I's eyes before we were married or even engaged, and part of a greater history. I have to think that he was born to us, in our family, for a reason. That all of that history, his name, and the rest of it has some greater purpose to help him through this. That he inherits my grandfather's strength and Kara's spontaneity. He'll need both in the future. I hope that he knows his place in all of this, and that he is perfectly loved. No other combination of factors would have or could have produced a James Camden Sikes, and he is our perfect blessing. I look forward to telling him that, and all of this when he is older. I look forward to watching him try to decide what to name his own children, and welcoming them into our family. Above all, I look forward to James writing his own chapter of the story, one his own children and grandchildren can tell.