Reverse Anniversaries

Spring is here. In Texas, bluebonnets rise in the fields to make picturesque scenes; giving birth to vast seas of flowers in pastures and prairies. It's the sort of landscape Van Gogh would have painted if he lived in Texas, bright colors and blue skies. People pull over along the interstate to take pictures. If something looks nice enough to get a Texan out of there car on an interstate, you can rest assured it's special. I am biased, but there are few things in life more wonderful than a Texas spring. Weather that begs for patios, shorts, and open windows. I like to think the weather in heaven is like this.

Last spring was the prime of James' life such as it were. He had reached that age between crying and walking that our pediatrician described as "perfect." He smiled constantly, cried rarely, and was an absolute joy. We took trips to the arboretum often, taking full advantage of the family membership we bought when Kara was pregnant. James had many photo shoots there. James and the Tulips. James and the grass with Daddy shadow (an ill-advised unsanctioned shoot). One spring day James and I sat in the patio of the makeshift biergarten in the middle of the arboretum and watched the world go by for an hour or two, James munching on a mum-mum and I a nursing a beer. I remember exactly what he as wearing. Rolled up jeans. Red plaid shirt. He kept trying to twist his way towards the silverware on the edge of the table. We had a good time.

That seems like yesterday and a lifetime ago. Today is eight months and seventeen days since James died. James lived exactly eight months and seventeen days. The split doesn't seem right. The new spring seems out of place, lovely as it is. It feels premature, the distance from the summer seems off. How can it have been so long? Looking back at his life, it feels like it lasted so much longer. It was so much more busy. James getting bigger, learning new things, even his appearance, always evolving and changing. Time seemed more active, more important. The time since lacks that sense of urgency, events blend into a static haze of things rather than a progression. That's not to say nothing has happened. A lot has, both to us and the world. I've done work I'm proud of, Kara has been in school almost an entire school year. James' fund continues to grow. We had Jamie the giraffe. But somehow it doesn't feel like any of it took a long time. The emotional resonance of the time when James was here relative to the time since is not the same. The joys and frustrations of parenthood were replaced with something grimmer and more static. The permutations of grief are many, but none of them are joyful. They're all shades of the same sadness. So time feels flat, soaked up by the monotony.

Absence tempers the joy of a spring day and dims the bright sun. It saps the flavor out of life just when you ought to savor it. So it seems hard to believe we're coming into a spring without James. I haven't been to the arboretum once since he died. I probably let the membership lapse. No tulips this year. Still, things can and do get better. The bluebonnet fields are beautiful, and that beauty doesn't have to be defined by an absence. It can just be. There are a lot of things like that. When I try to look at things as they are rather than what they should be I find it improves my perspective. Looking at things as they are leaves me with memories of James that enhance an experience- "Remember when James did x" rather than detract from it "This would be so much better if James were here." It's not a perfect answer and no perfect answers exist. I'm just trying to muddle through the least of the bad ones.

Thank you for your continued thoughts and prayers.

Association

Last week should have been a good week. A short week arriving on the heels of a three day weekend, a brief interruption before yet another weekend. Despite the fact that it's January, Texas in its infinite whimsy provided us with a steady diet of medium sunny days, springlike almost. If you wanted to grill last weekend or pretty much any day this week, you could have. Memorial day in january. There's a lot to love abut living somewhere where you can comfortably wear sandals in the dead of winter.

Despite all that, I felt off this week. Somewhere between the dawn of the New Year and James' six month little details began to spring to mind. Last year I calendared his birthday (along with everyone in my family, because I'm not very good at that otherwise). No need this year, and google calendar agrees. I didn't calendar anyone this year, blank places where reminders ought to be. Apologies in advance. The changing of the dates reminds me this is a year James will never see, that will come and go without him entirely, just as he never lived through a full calendar year, stealing months in 2010 and 2011. He never lived in any August or September. All of these little details run together, odds and ends of grief.

For me, grief is a weirdly free-associative kind of event. It's so raw that I can't just sit down and think "my son is dead" is for hours at a time. Instead, I find myself getting there through more circular means. The title of an article on a magazine about never realizing your full potential. Children's potential. Unfulfilled potential. Dead children. My dead child. It's always there, simmering beneath the surface, waiting for an opportunity. I'd rather have that than not have it there, but some weeks, like last week, it comes up more easily. In an article about movies coming out this year I discover to my horror that something called "Abraham Lincoln: Vampire Hunter" exists and is coming to multiplexes near you soon. I am reminded that Lincoln lost several children. Eddie, who died at four, and his favorite, Willie, who died at 11 roughly a year into his presidency. Putting my long-neglected history major to good use, I locate and read a few scholarly articles on Abraham and Willie, and how he responded to the loss. Four days with no official correspondence, visits to the cemetery. His wife Mary began to go mad, a process she'd at least legally succeed at in about a decade's time. Digging a little deeper, I found original contemporary newspaper articles which- in stark contrast to how such an event would be covered today- spent relatively little print on the subject, focusing the week's news on Jefferson Davis' inauguration as the "Rebel President" that same week. These are the kind of things I've been doing lately. It all comes back to James.

So this week felt off, everything percolating without any real purpose. I sometimes feel like its only as we get farther away from James' death that the long term implications, and the full force of grief, begin to set in. Immediately following James' death the pain was too immense and immediate for comprehension, an all-consuming thing. It was however, inchoate, something beyond understanding by virtue of its immensity. Only now, with time passing and James still gone, do things begin to fall into context. The changing year is part of that, the rapidly accumulating experiences in which James cannot play a direct role. It sometimes feels like I'm waking up to that reality, slowly recognizing it. So now I'm just trying to figure out a process. I doubt that will come quick. I'm just along for the ride.

Thank all of you for your continued thoughts and prayers, and for the very sweet messages we received on the 16th.

Twenty Nine

I'm a day late with this, but here it is.

For me the 29th is always harder than the 16th. The 16th at least represents some sort of finality, an unmistakable conclusion. It is an end point. The 29th is full of possibilities, unanswered questions that tug at edges my composure. The improvements are noticeable but incremental. October 29th was more unbearable than November 29th. Even the monthly counting itself represents a fascination that should have been ebbing. James would have been 13 months old, over a year and rapidly heading away from the period in which age is measured in months. I don't tell people I'm 335 months old for instance, and I suspect neither to do you. At first we measure in days, then weeks, then months and before you surrender to years entirely you're in elementary school, lording your five "and a half" over classmates. James will never make that progression, and so just as he's frozen in time so are the units in which I keep calculating his age. 9. 10. 11. 12. 13. Five 29s gone. Almost half a year. I'm sure one day it'll stop, but I wonder when.

Each time,it seems something else strikes me in exactly the wrong way. Today for some reason is was the background picture on my phone. It's of James and Kara, posing before his last photo shoot with photolanthropy. We coaxed a smile from him and he's bouncing on Kara's hip. We don't know what's coming and we're happy. It was one of our last good days, before salt, swelling and the tumor caught up to us. His pictures are everywhere of course, but today each time I turned to my phone the dateline under the time of "Tuesday, November 29th" grabbed me. When will I change the background? There will be no new pictures. What would I have changed it to? James walking, talking, chasing the dogs? Rhetorical questions, all. It's always something.

For me, the best response is usually to do something. What isn't necessarily as important as the act itself. Work, find a new book, watch a movie, work out, it doesn't really matter. The important thing is to have something to do in order to prevent the rhetorical questions from devolving into a rhetorical narrative. I'm not suggesting reflection isn't important, it is, but for me at least it's important that it be at least purposeful. Four hours in bed focused on loss rarely helps me. There's a place for it, but I try to leaven my reflections with the good things when I can. James made me smile much more than anything else. When I can remember the good things as they were, not in the light of what isn't, I feel better. I still mark the time, but I can remember the 8 29s we had to celebrate and cherish them accordingly. This is sometimes easier in theory than practice.

So today it was the phone. We'll see what December brings. I've attached a photo of the last of James' weekly pictures. This is from his second full day in the hospital. He'd had surgery and been under general anesthesia multiple times within 48 hours of this picture, but the boy just can't stop smiling.

Thank you for your continued thoughts and prayers.

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.

Two months

Two months ago today, I woke up and knew that James would die. I woke up with the sound of his labored breathing in my ears and hoped it would pass. I bargained with myself even then. A few minutes on oxygen will get him on track, just a few. I won't turn the oxygen on all the way- I'll leave something in reserve for when it gets worse, because it's not the worst yet. I think the mask is broken. That must be why it's not working- I changed the tubing, that will make a difference. Small things, little deals that mattered to no one but me.

There was no bargain to be made though, no deal to be struck. Within a few hours I'd given up and turned the oxygen on full blast- the obnoxious whir that at first seemed so annoying completely faded into the background. After he died I couldn't get it out of the house fast enough.

This month went faster. The timelines are accelerating, especially as we insert ourselves back into the world at large, in roles that were suspended totally while we watched James. Even so, the world still seems to have lost its axis. In many ways, it's a question of relativity. Your child is the thing in your life by which the rest of your roles are defined- your world in many ways revolves around them and their needs. Your work feeds them and provides for them, your family is based around them after they're born, not your parents. Your relationship with your spouse is triangulated by them. Without them, the central narrative around which much of your life depends vanishes. The rest of the roles have to readjust themselves without a common point to fix themselves on. Everything suffers collateral damage, and the process of adjusting is colored all the while by grief. No matter how much time passes, it still seems to me on some days that it didn't happen, that it was all some sort of nightmare that I am almost certain to wake from. But that's just more bargaining. I'm not waking up.

So I wouldn't say it was a better month. Faster, yes. But better is also relative. James didn't die this month, so this month was relatively better than July. Thank all of you for your continued support and prayers, it is a great blessing to know that James is in your hearts.

Yesterday

~*Disclaimer: This post contains discussion of breastfeeding and breastmilk. 
If you don't want to read about that, then don't!*~

Well, so after I had my little pity party on the blog yesterday I decided that I needed to get out of the house.  I drug myself to the gym for the first time since I was pregnant.  During my pregnancy I did water aerobics about 3 times a week.  I was the youngest one by a good 30 years, and some of the women were in their 80's!  They were so sweet to me while I was pregnant, and it was so fun to have a group of older women that I could ask all my mommy questions to!  I had ruptured discs in my back during my pregnancy, and I had back surgery when James was exactly 6 weeks old. Between the recovery from surgery and some other things that happened before James got sick, I just had not been back.  I know.  Slacker.

So yesterday afternoon I went to the gym.  I got on the elliptical and made it the whole 30 minutes.  It was awful, not going to lie.  But I finished, and went back today and did it again.  It's amazing how much better I feel when I get the endorphins going.  Everytime I hear the word "endorphins" I think about Legally Blonde.  Does anyone else think that?!  I might have watched that movie a few too many times...like every night before I went to bed my entire sophomore year in college.

I came home, and then the Mother's Milk Bank of North Texas called me to set up a time for me to bring in the milk I was donating.  They suggested yesterday afternoon.  I knew it was coming- I had applied and had a blood test already.  But for some reason it was so hard for me to actually follow through and donate the milk.

Like I said before, James was strictly breastfed.  He was so into the boobie that he refused to take a bottle.  Ever.  I mean he would throw them across the room when he was older.  When he was younger, he would clamp his mouth shut and refuse to open it.  Then he would cry and cry.  When I had my back surgery, he had to take a bottle.  I was on so much medication and anesthesia that I had to pump and dump.  So my mom got him to take a bottle by cutting a hole in her shirt, spilling milk all around it and pretended he was getting the boobie.  It didn't work at first, but he finally got hungry enough that he ate.  Have you ever seen a 6 week old baby glare at you?  Well, I have.  James was so mad when I came home and wouldn't feed him!  It just broke my heart!

So the whole time he was in the hospital, I pumped with the industrial grade pump that the hospital has.  Wow, that pump is ridiculous.  Each time we were discharged from the hospital, I came home with bags of frozen milk.  After James died, I knew that I needed to donate the milk.  It doesn't do any good sitting in my freezer.  And I know that it will help a baby in the NICU who really needs the milk.  But a part of me just didn't want to give it away.

So yesterday I pulled up to Baylor hospital and gave all my frozen milk away.  I think the lactation nurse was a little confused why a woman with no baby and no car seat in the car would be giving her milk, but she didn't ask any questions. 

After that I dropped by my sweet friend Monica's house (who is expecting twin boys!  I'm so excited! :) ) to say hi, and then Matthew and I went out to the cemetery to see James.  Honestly, I don't really like going out there.  I know that some people find a tremendous amount of comfort going to the cemetery.  I am just not one of those people.  I think it upsets me more than comforts me.

So yesterday still was hard.  But we got through it.  Below is a video that my Dad took of James right before his big craniotomy.  I think he says "momma" in it!  It's the only time I ever heard him say anything close to it, and it makes me cry everytime I watch it.  But- crying in a good way.  I'm so thankful that I can hear his sweet little voice.  One of my biggest fears is that I thought I might never get to hear him say that.  I hope you enjoy! (And like every other picture/video from the hospital- I am not looking my best.  I'm self-conscious about it, but I'm trying to get over that so ya'll can see more of Jamesie!)