Guilt

Loss works a painful hindsight on your actions. You become acutely aware of all the actions you could have taken, but did not. With the perfect clarity of your present knowledge, unencumbered by the demands of actually acting, you suddenly become aware of all of these contingencies that in the moment you never even thought of. I find myself going over things again and again, racking my mind for something, anything that I could have done differently.

There's a thousand thoughts about how he got sick. Did I expose him to something, when I held him in my lap with my phone in my pocket, did it give him cancer? Should I have let them do the catscan when he was 4 months old? James' tumor was a random one. Some ATRTs are the product of a mutation throughout all the cells of the body, an innate flaw that lurks patiently in DNA, until tripped by some random event or another. James wasn't that. The only sick cells in his body were the tumor cells. He was perfect in every way otherwise, just as God made him. So I keep asking myself what did it? What tripped that first cell into an ATRT cancer cell, especially one like James' ATRT? A furiously aggressive tumor, even by ATRT standards, it burned through his body and killed him in less than the time he was supposed to have to recover from his craniotomy. That one illusory success we enjoyed throughout our whole stay at the hospital. This is all foolish of course. He didn't get cancer from a catscan, a phone, or something in the water- if anything that catscan helped us because we wound up having a benchmark when James first got to the hospital, so the doctors knew better than to treat him for something else. You hear nightmare stories of parents in and out of the hospital for months without an ATRT diagnosis, their children suffering. We found out in just over a week after James got sick. Nothing caused James' tumor that I or anyone else did. It just was. Somehow knowing that just doesn't help.

Then there's the guilt about when he was sick. When he first got sick I didn't really take it seriously. He's a sick baby, babies get sick. He's throwing up, what's another summer bug. I just didn't worry about it. We went to the pediatricians and I patiently waited for them to confirm my suspicions, toss some zofran our way and send us on our way. I never pushed them to do more. I never thought- hey, could this be serious? Even when we went to Medical City Children's, I remained supremely unconcerned. Here's where the first real guilt creeps in. Shouldn't we have gone to Children's? They found his tumor there. We only saw a doctor right before we left at Medical city and they barely even examined James. They just gave him fluids and got hacked when we made them stop trying to give him an IV after they screwed it the first few attempts. They had an IV team at Children's that did it in one take. I should have been more aggressive, I tell myself. I should've gone somewhere else, found the diligent and sharp intern (never believe people who tell you not to go to teaching hospitals) who first noticed James' symptoms at Children's. I should have pushed for more treatment faster. I should have made them find it, instead of sending us home with James still sick. He deserved a better father than that. Still, I remember being by and large supremely unconcerned, if annoyed by the care we received. He's throwing up, I remember thinking to myself, we'll get fluids, medicine, and life will go on. It's not like he's dying. I probably even made some stupid jokes. I don't remember.

Even on the way to Children's, stopping by the house to pick up clothes and toys for a quick one night stay I remember my worst case scenario having evolved from the weekend to that Wednesday from stomach bug to stomach parasite, as WebMD warned me. WebMD did not suggest brain cancer. Still, I assumed a night of observation would translate into a quick solution and an easy out. Just need to pick out the right med. If anything, I thought I was overpacking, with at least half his toys and about a week's worth of clothes. I remember talking to someone (can't remember who- I remember very little about that day before the hospital) at work that day about James being sick and them asking if it was serious, and my lackadaisical response of no. How could it be serious? He was an eight month old. What happens to eight month olds? My mother asked me if I wanted her to come down and I said no, he's fine. And fool that I was, I believed it. I feel so guilty about that. He must have been in so much pain and here I am, his father, brushing it off as something not that serious, a bump in the road and a one off night at the hospital. I feel so guilty about that, about how "ok" I was until the differential started narrowing. I know we caught it "early" relative to a lot of people, that we were diligent with 4 pediatrician visits and 1 ER visit in a week before getting admitted. Still, I feel like I could have done more. Should have done more.

When he was sick, there's still more guilt. Not pushing the doctors hard enough to get another MRI after his post-op MRI, contenting myself with feeble catscans and still less useful medicines. I worry about how much pain he was in, how little medicine we gave him. My poor little boy. I feel guilty about each and every night I went home to sleep. I had barely three weeks left to spend with him, and I spent more than one night away from his side. I would give anything for just one night in the PICU again, with James stubbornly refusing to sleep, pawing at his leads and his IVs. I'd kill to try to spend another night on the worst of those PICU beds, the uneven vinyl pullout with less padding than my cheapest sleeping bag, barely long enough lay down on, more comfortable your leg hanging off it. I feel so guilty about that. About the Rangers game we went to, the meals out we had. Every moment I spent away from him. I feel guilty about the end. Did I give him the right medicine? Too much? I followed the directions but what if I screwed it up? What if I made it faster.

Above all, I feel guilty about the time I missed with him while he was still here. There are so many things I wish I'd done that I thought I'd have time to later. So many experiences lost. I really don't have words for that. I could lie to you, but why bother? I know better. I assumed I'd have years to learn to be a better parent, and I just didn't get there.

I've read enough on grief to know at this point that guilt is "natural" and part of the healing process, that I'm projecting and deflecting, attempting to avoid the reality that there is no one to blame, no one to be angry at, and no one to seek satisfaction from. As always, academic understanding is useless. I know I'm not going to die on a roller coaster, but my body often disagrees. The guilt I feel about James is a bit like that. I know it won't help anything, I know it can't. I know it won't help me, but there it is, whispering in my ear reminding me of all I could have done. So I just feel it. The silly thing is that nothing I could have done would have mattered. If they'd found James' tumor that weekend, he'd still be dead. If I'd spent every night with him, he'd still be dead. Nothing I or anyone could have done would have made a difference. But I was his father, his protector- I was supposed to be able to do things like that for him. Sometimes I feel like guilt helps me remember that, helps me connect to him in an odd way. It's a link of responsibility. I miss that.

Thank all of 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.

6 months ago and Lasts

I can't believe that I last held my baby 6 months ago.  6 months ago today was the last time I got to be "Mommy".  It was the last time I rocked him, the last time I sang to him, the last time I kissed his face and still felt the warmth from his cheeks.  Those are the things I miss the most.

So many "lasts".  In my last post, I wrote about how I typically keep it together in front of people.  Apparently, when I write something on the blog, I then become the opposite!  This week I have been a weepy mess.  I have sobbed everyday, in all sorts of awkward situations.  The times that I haven't actually started crying, I have bit my cheek so hard it bled to keep it together.  (I know most of you will say let it out, but there are times when it is completely inappropriate for me to cry- like at work!  So I'm trying to come up with a better way than to make myself bleed).

This is just a hard weekend for me.  It symbolizes a bunch of different things over the last year, with the culmination point being that James has been gone 6 months.  It's crazy how much can change in 6 months.  My sweet friends and I got together Friday night with their husbands and kids.  All the kids were lined up watching "Curious George" while we ate.  They were so adorable.  But in that moment, I wondered where James would have sat.  Or would he have sat still to watch the movie at all?  These were all his friends from playgroup.  They have gotten so big! (This isn't my first time to see them.  It was just my first time to see them all together as a group).  They are talking more, walking faster, playing with bigger toys and their personalities are shining through.  And so watching them makes me wonder even more what my life should be like. 

Sometimes it's hard for me to even identify as a mother anymore.  I see my friends who are parenting 1, 2 3 year olds and I have no concept of that.  I have no earthly idea what its like to even parent a toddler.  Just like they have no idea what it's like to hold their child as they take their last breath.  Sometimes I feel like I don't know what my identity is anymore.  None of the "roles" seem to fit completely.  I don't see myself as a Mother.  I don't identify with being a student, even though I am one.  I don't picture myself as a professor, but in 2 days I will be.  So what is my identity?  Right now it feels like I'm just floating by...an hour as this....2 hours as that.  But none of them really sticking.

I still feel really guilty.  I'm working on not feeling that all of the time, but it's still there.  I read an article probably a month or two ago about pediatricians not dispensing enough pain medication to infants.  The study suggested that since infants can't tell you if they are in pain, doctors err on the side on not over medicating them.  I got to thinking about how James was discharged from the hospital 3 days after major brain surgery.  They sent us home with liquid pain medication that he subsequently continued to throw up.  So during those times, he really wasn't on pain medication.  His head must have been hurting- it had just been cut open 3 days before.  Was he in terrible pain and I just didn't know it?  Why did I not insist that he be sent home on IV pain meds?  It continues to haunt me that he could have been hurting and I didn't do enough.  My therapist and I have gone over and over those days, and he assures me that I've done everything that I knew that I could do at the time.  (Yes, for those of you wondering, I do see a therapist to try to help me with these issues). 

Some days I still feel very overwhelmed.  Sometimes it's overwhelmed in a good way because there are so many lovely people in the world who are just kind-hearted people.  I'm overwhelmed that people care enough about me to check on me, even when I don't respond.  I'm overwhelmed because I understand why some of you would care about James- because he was the most beautiful baby in the world, but to care so much about me is overwhelming. 

I'm trying to figure out a balance between honoring James with the life I have left to live and feeling guilty that this new life is drastically different because he isn't here anymore.  Does that make sense?  I feel like by trying to go to medical school I'm honoring him.  But at the same time, I wouldn't be trying to go to med school if he was still alive.  I know it's not healthy to stay home and sulk in bed- and so doing so doesn't honor him.  But if he were alive I wouldn't be meeting friends for drinks after work.  I've created my own Catch-22 I guess.  

Ok, so much for my rambling thoughts.  I've added a photo shoot of James from last January.  In the middle of it Maggie decided that she need to protect James from the camera.  My camera is sitting in the closet, and hasn't been touched since he died.  I guess I decided that there was no point for pictures anymore.  Anyway, I hope you enjoy the pictures of my precious boy.

Momentum

This was the background picture on my phone for the longest time. It's James with his sunglasses on before we went to the Saint Patrick's Day Parade last year in his first outfit of the day. I always thought he looked really cool.

Somewhere scattered in the cobwebs of my brain remain the concepts of momentum and inertia. If my faulty High-School Physics (the high point of my physics education) recollection serves me right, together the two have to do with the energy needed to affect movement. Inertia is roughly how much energy you need to get something going, while momentum is the force it carries as it goes. It's quite possible I'm wrong. Math and science, while interesting, were never "core competencies" of mine. Lazy child that I was, I always migrated towards the subjects that came easiest to me, English, History, and all things verbal. I can still remember the disappointment I felt when we graduated to junior high, when reading, and thus another easy grade, lost its place on the report card. Pre-Algebra proved a poor substitute.

Since James died, I've felt like what I've needed to do was gain momentum. In the first few days after he died we were going non-stop, planning the funeral, picking out a grave, attending to all the little thing that needed to happen, too terrified to pause and reflect upon what had happened. Afterwards, in the first few weeks that followed time and life morphed into some indiscriminate blur, the pain too raw and too tense for processing or understanding. Everything dissolved once that initial momentum faded away, when family and friends left for the lives they put on pause to get us through those first few days. Sometimes I think what happened to us is closer to hitting the stop button than the pause button, the film ready to be ejected, not resumed.

The act of showering became an achievement, one I allowed myself only so that I could put on clothes and drive out to my son's grave. I remember closing my eyes and thinking to myself "You have to get up. You can't do this all day. Just get up and drive." I'm sure I did more than that. I know I brought books with me. I finished several. The plots and titles are vague, as if I didn't keep them long enough in my short term memory to form any lasting impressions of the characters or the plot. The initial momentum of those first few days faded into an almost total inertia, drifting along responding only to those problems that demanded immediate attention.

Since then, things gradually improved, but maintaining momentum is not easy. The old physics concepts of equal force and what not evaporate. Small things disrupt the flow, derail the day. Leaves gathering in his swing outside, left long enough that they've begun to crumble, brown and dead. There's no reason to clean them off anymore as we once did, careful to make sure James wouldn't get dirty. Cleaning out the trunk of my car (years overdue) I discover packages sent home with us by the doctors we interviewed when Kara was pregnant, stockpiles of formula and guides that I dump directly in trash. E-mails from buy-buy baby in every inbox, the product of registering each address for 20% coupons to double up on big purchases. Like the rocker, the same one he died in. I researched rocker brands and styles to make sure we got a good deal. I've almost stopped all the e-mails now, clicking through pages of distractions to get off the lists. Sometimes these little things leap out at me and the inertia slides right back in, and I'm useless for the rest of the day, playing that image over and over again in repeat. The finality of his death comes back to me and I lose myself in it.

There have been many times that I wished for this process to be linear, for benchmarks, some kind of metric to measure my progress in. Some kind of guide that tells you how you should feel 175 days out from your son dying- Day 199 in the old count I used to keep here. Day 1 was the day James got sick. On Monday, it will be 180 since he died. Six months. Half a year, two months shy of James' entire lifetime. The laws of thermodynamics don't work though- not to measure momentum, inertia, or any of the starting and stopping in between. It's not terribly neat. Nothing about this is. The hardest part has been to understand that maybe that's not a bad thing. Maybe that's just the way it is, and it doesn't matter how stuck in inertia you get our how much momentum you build, as long as you find your way. I've decided to stop worrying about how.

Thank all of you for your thoughts and prayers.

Kara and James

This is a picture of pregnant Kara. She was radiant.

Kara worries a lot. She worries about things that would never even appear on my radar, like matching clothes and ottoman throws. She worries about people more than I do. I am often more selfish, more indulgent to put it mildly. I don't usually worry, I tend to assume that everything will work out in the end, one way or another. Kara once found a flight to Germany on the cheap over spring break when I was in law school- nestled perfectly between exams and deadlines that demanded my full attention. She thought it might be fun. I decided, somewhat whimsically, that we should go to Germany. I responded in what might be described as a typically Matthew way- somewhat impulsively but decisively. I tracked down the flight, compared alternatives, and within a week or two was mercilessly scouring travel sites for the trip we’d be taking to Germany over springbreak, law school or no, and regardless of the fact that we couldn’t actually afford it then. I am more easily distracted, and much less practical. She is more grounded, more level headed, and a thousand times more practical. We go to test drive a car and I buy it then and there, provided I walk away with what my research and I consider a "win." Kara would never do that.

All of this is to say that Kara and I are complete opposites, in almost every way. Our approach to parenting was no different. I will freely admit that I was terrified of becoming a father. Anxious, excited, yes, but also deeply terrified. While I love my father dearly and admire him, when I was young we were never really close. We simply didn’t have a lot in common. In terms of temperament, we were never anything alike. When I was younger I was often difficult, broody and introspective with a quick temper. My father is gregarious and quick to make friends. If he wanted to talk baseball, I wanted to talk history or politics. If he wanted us to play golf together, I quit playing on general principle. When we learned Kara was pregnant, I hoped for a girl, because I wasn't sure I knew how to foster a good father-son bond. Kara was the only person who thought it would be a boy- and as always, Kara was right.

Especially during the first few months of James’ life, I found it hard to adjust to fatherhood. I had no idea what to do. I loved James with all of my heart, but I made a lot of very poor decisions. I struggled with my role, with how to act and what to do. If it had been up to me alone, James probably wouldn't have done so well. But it wasn’t. James had Kara too. He had her calming, steady presence to look after him. And she did. Kara mentioned once that she never spent more than a few hours away from James. That was not the case with me. I spent days and days away from James. I have many regrets. More than once I told myself that if I missed x, y, or z it would be fine- I had a lifetime to make up for it. I was wrong, in every possible way.

I got better. It took a while to sink in, but fatherhood grew on me. My fears ebbed and I grew into my role. I embraced it as mine, not anyone else’s, and did the best I could. I came to realize I didn't need to be anyone's vision of a father, just James'. James and I developed our own rapport of actions and habits apart from Kara. Games like boom goes the baby, where I’d send him soaring higher into the air than his mother would ever allow. He was a huge fan of my swing pushing style. We had our own collection of nicknames and vocabulary. I called him little son. I'm not very original. We got to know each other better. Eventually, it became impossible for Kara and I both to imagine what our lives would have been like any other way, with a daughter or with any baby but James, with all of his unique quirks and characteristics. Even when he got sick, I always resented people who in passing would treat him and other babies as if they were interchangeable, from absent minded respiratory therapists insisting they "always" do this to the lazier general (not neuro)anesthesiology nurse who failed to notice the sex of the child she was about to operate on. People often forget that even at eight months old, a baby is more than that- each is a person, slowly acquiring the traits that will define them.

Kara was instinctively and naturally brilliant with James. A love poured from her for him that was a privilege to see. Her precious baby boy, from the first moment in the hospital when I held him against her chest. She knew to do all the little things that I did not, and performed them flawlessly. I learned a lot from her example.

When James became ill, Kara led by example. No crying in James' room, bright faces and games for Jamesie. Our disparate styles became an advantage, as each of us processed the information in our own way, so that we could inform the other. Our perspectives often differed, but they informed one another. We learned from each other, and because we were different, we were able to be strong at different times, which often translated into the right times. We could lean on each other, so that both of us could be there for James. We were finally fully functional. And none of it would have happened without Kara, indeed, most of the best and most perfect moments of James’ life are impossible to imagine without Kara.

There is no one on this Earth with whom I would have preferred to go through that with. And there is no one who could have endured it so perfectly. Kara is, by any definition of the word, a fantastic mother. I truly believe that God chose her to be James’ mother because he knew how extraordinary a mother James would need, and he knew that Kara could provide that to him. I am grateful for that, and much more.

New Year's Eve

Here's James in one of my favorite cell phone pics of him, a candid James in the bath shot, from near New Years last year (how I wish the photos on my phone were time-stamped).



I never liked New Year's Eve. The fireworks, the lack of purpose, the hollow resolutions always fell flat to me. Always advertised as the biggest party of the year, I long felt I'd been sold a bill of false goods. I spent too many New Year's Eves at home and sick, recovering from one operation or another, nursing jello and resentment for my able-bodied peers. When I grew older, I became more annoyed because now it seemed I'd missed out on the foundational precepts of the holiday. The ball, the kissing at midnight, the countdowns. These all rang hollow to me, celebrations without context.

What after all, is there to celebrate? The year changes, there's nothing novel to it at all, it's not even exact- otherwise we wouldn't need leap years. One more trip around the sun, one of several billion before and several billion to come. Yet lately days have taken on arbitrary meaning to me, the 16ths and the 29ths of the month suffering under the weight of all that has come before. Time passes faster now, sometimes I feel as though I went to sleep one day and woke up six months later. The time we had with James feels so full, and all that came after so brief in comparison, abbreviated by what its relative lack of importance.

Looking back on some of the entries from our time in the hospital and then at home before we lost James, it really wasn't that long at all. Less than four weeks passed between the time when we found out James was sick and when we held his funeral, but that time was filled with so much. So many doctors, plans, and news. So much research into new types of cancer, evolving diagnoses and treatment protocols. Spurts of adrenaline- we have to do this now- interspersed with immense grief. And then, after all of that compressed into one little ball, nothing. It seems like a flash between then and now. Time itself seems split into two segments, there is Before and there is After, with the timeline delineated by a quick stab of trauma.

Perhaps that's why I'm excited to leave this year behind. I'm eager to see 12 on the end of the date instead of 11, because there are so many horrible dates that end in 11 and none in 12, so many days I'd like to leave behind, though I know I never will. Last year we took James to a New Year's Eve party and left early, as James himself quickly decided that he would have little patience for for fireworks and champagne. And Master James had complete decision making authority over all matters relating to the schedule. We made it home shortly before the New Year and it passed with barely a notice, fireworks cracking in the distance, the dogs alarmed. James slept through it all, and so we slipped into 2011 with no suspicions. This year, I intend to welcome 2012 gladly, eager for a better year. Suffice to say, if the Mayans were right about the apocalypse I am going to be very annoyed. I don't have the patience for any more life-altering disasters this year. So I'm eager to say good bye to 2011 and 2012. I just wish that we had James to share it with.

Happy New Year to you all. Thank you for all of your support and your prayers this year, we needed every one of them.

Should have

So I know it's been a while since I've posted on here.  It just didn't feel....right.

I was flipping through channels on tv the other day, and caught part of an interview that Jennifer Lopez was giving.  She was speaking about a health scare that her daughter, Emme, had a few years ago.  Apparently one morning Emme woke up with a bump on her head.  J Lo started panicking and said, "If she's not going to be ok, I'm not going to be ok."

Well James is not ok.  And therefore, I'm not ok.  Nothing is ever ok. 

Everything I say or do seems like a substitute for what I "Should be" doing.  Like James "should be" 14 months old now.  I "should be" wrapping Christmas presents and decorating for my baby's first Christmas that he will actually participate in.  I "should be" baby proofing and taking trips to the park.  I "should be" dressing James in the Christmas outfit I bought him last spring on clearance that is now just hanging in his closet with the rest of the fall and winter clothes I had stocked up on. 

I'm not sure when the "should be's" stop.  Do they ever?  Is there ever a time where this alternate universe becomes reality?  Or will life always be measured by what should have, could have been?

I can keep it together most of the time.  I have the whole "pretending to be fine" thing down pretty well I think.  I can smile and laugh.  I can tickle other people's children and kiss their sweet cheeks.  I can push away the thoughts and memories that come bubbling up so that I don't become a crying mess in front of anyone. 

I don't let myself go through the pictures and videos from these dates last year.  I can't go there.  When I start to do that, I get really angry.  I get mad that last year I tried to be the perfect wife, mother, daughter in law, trying to appease everyone.  In the end, I ended up exhausted and and didn't even get to hold my child during Christmas eve service or while opening presents.  And nothing was ever good enough anyway.

The best thing I can saw that has happened the last month or so is that it's over. I survived.  I don't mean to be really depressing, and to be honest, this is a notch above the depressing that is usually lingering in my mind. 

A few months ago I was watching the Divine Secrets of the Ya-Ya Sisterhood.  There's a part in the movie where Sidda's (Sandra Bullock)  fiancee is talking to Vivi.  He says to her that Sidda is always "Waiting for the bottom to drop out".  And Vivi replies to him "You know why she thinks that, don't ya, honey? Because it did. It always did." 


And I guess that's how I feel most days.  The bottom has dropped out.  For some reason, in my life, it always does.  Most of you probably have a friend that just can't catch a break.  Well, I'm that friend.  Right now I apparently have a severe cornea infection that is finally clearing up.  I'm closing 2011 with a bang.  I mean, who gets a cornea infection?  At this point I'm afraid to ask what's next.  


And it's not just the eye infection- it's just been a really bad year. James's death was not the beginning or the end of it.  


I'm trying to be hopeful that 2012 will be better.   I'm not sure what better means, but I'm hoping that at the very least it's not worse.  


Thank you all for your emails and cards, and sweet packages.  I am horrible and haven't responded to a single thing lately.  I just haven't functioned well for a little bit.  I hope anyone who sent me anything understands....In my old life I would have been much more on top of things. 

Together

I do a good job hiding it, but I'm bit of a procrastinator. It's very rare that I actually won't do something, but the longer I have to dawdle on something, the longer I'll take to do it. If anything, I'm better in a crisis, managing events that require rapid responses. This is a weakness of mine I'm aware of, but it does get me into trouble from time to time. In law school, I developed a bit of a routine to keep up with things. Monday through Friday I'd do my daily work, briefs, notes, etc. Friday nights off. Sunday evening for Monday's work. That left Saturday as a "free" day. Except it wasn't. To really get ahead and do well, Saturday needed to be an outlining day. For those of you fortunate enough not to have attended law school, outlines are like your own personal Cliff Note's for any given class. A brief summary of what's important and what you should study. The distillation of your notes. For me, Saturday was always a day for outlining, but as I mentioned, I'm a procrastinator.

The result typically was that every quarter after my first few (when I was too terrified to skip anything), once I thought I had the hang of it down, I'd occasionally skip outlining for a week or two. Like taking a second cookie or a second helping mashed potatoes, it's not something that bothers you at the time. Do it enough though, and eventually it adds up to a problem. So a few weeks in I'd find myself facing a particularly punishing Saturday, set up by my own laziness. Slowly, a sense of panic begins to set it in as you realize just how much work you've put off. I'd let it fester for a day or two, but always at some point it would end with a moment when I just decided to do it, to go in, kill a day, and just get it done. This decision was usually preceded by a little mental pep talk along these lines: "Pull it together Sikes. You need to calm down, relax, and get your stuff done. This is a waste of time. You will get nowhere doing this. Get it together. Now." For some reason my internal monologue calls me by my last name when I'm angry, much like a gym teacher. It always worked once I made the commitment.

The "pull it together" advice line is something I've used in other circumstances. Ones more important than my procrastinating on a few outlines. The first day of the bar exam, the kid on my left trembling, his fingers a nervous tap tap tap on the side of his laptop. My grandfather's funeral, sitting straight up in the pews with my eyes fixed on the casket, frightened that I'd miss the minister's cue to give the eulogy, even more scared I wouldn't finish it once I started. Before each and every one of my surgeries, fighting the nagging conviction I wouldn't wake up afterwards, even though I always did. A minute or two after we found out about James. I stepped full away from the doctor, knowing he didn't have any answers I wanted to hear. I stood by James' PICU crib, resting my hands on the railing and staring right at him, certain if I let go I'd fall down. Most of the time, it worked. The pep talk came and went, I got through it, and everything was fine.

The pep talk doesn't work anymore. Actually, that's not true, it works just fine on a lot of things. Not for James though. It's almost as if there's nothing to pull together, no core to form. The memories I have are scattered, woven together with everything and too distinct to coalesce into something I can hold together in a single moment or by an act of will. Even if I could, I don't think I'd want to. I can't summon willpower and finish this off to move on the next thing. It's been five months and I'm functioning. I've come a long way from the first few days and weeks where everything beyond my nightstand seemed too far away. I just haven't moved on. I haven't pulled it together and conquered. Maybe I won't. That's what they say in all the pamphlets, the ones the hospice sends to you once or twice a month. You don't "move on." It's more a reconciliation process. Or so they say. I just know that this isn't something I can will away.

Thank all of you for your continued thoughts and prayers. The holidays are hard, and it's good to know we have people to lean on.

Graveside Revisisted

When I first came here, it was hot. My iPhone overheated laying in the grass by his grave, and my Kindle threatened to die for the same reasons. Despite myself I laughed and laid down in the grass for a moment, spreading my arms to soak up the sun, the rays warming my skin. I've never minded heat. I virtually never burn, and I've always found the the sun relaxing, a natural sauna. I wondered vaguely how far down the heat seeped into the ground, if six feet were enough.

To save the electronics, I retreated to a spot under a nearby tree, borrowing a bench dedicated to another child. The tree by James' grave is too young yet to provide much shade, a spindly thing with less leaves than one of the nearby bushes. Perhaps by the time I join him that will change. I stayed for a long time and read. The jogger came, dragging herself round and round the cemetery in some kind of death march, she parked under a tree to spare her car- but not herself- the worst of the heat.

I still go every week. It's an 80 mile round trip but I've come to find the drive relaxing, even useful for phone calls to catch up with friends or family I otherwise might not call. I give evasive answers when they ask what I'm doing, somehow "going to the cemetery" seems like a macabre response.

It's amazing how much things have changed since I started. There is a slight chill in the air now, the sky is gray and the sun is nowhere to be seen. Unlike my tolerance for heat, I cannot bear the slightest cold, the legacy of a childhood spent in winterless South Louisiana and Houston , so I'm bundled up in a fleece and boots. Rain spits fitfully from the gray crowds in the sky, not enough to soak you, just enough to be annoying. Only one leaf remains on the spindly tree. To a casual observer, there is no sign of the burial apart from the marker. The grass has slowly creeped over the edges of the soil, carefully graded down week after week from the mound it began as. To me, you can still see where the grass isn't as dense as it should be in a few places, how the soil still settles after a rain at a slightly different level than that around it. It's spongier. If you're careful, you can notice that James' grave is shorter than those that have popped up around him. You don't have to dig as long of a hole for a child. The jogger remains, but she's bundled up as well, an oversized hoodie draped over her skeletal figure, oblivious to these elements as well. She's grown her hair out, it's going gray but she's dyed it. She moved her car to a new spot, as there's no need to protect it from the sun. I wonder if she remembers me.

If the weather's decent, I'll read for a while. Otherwise, rain or shine, I'll spend a few minutes thinking of him, of everything that might have been, and everything that was. Each time before I go, I close with his song, "Jamesie the Giraffe."

I sometimes wonder why I still go. I can't change anything there, or anywhere. In the end, I think it's an excuse to mourn, a directional focus for grief. I spend a lot of time trying to figure out the why of things- answers are important to me- but this situation does not lend itself to that. So I'm not looking for an answer in Denton. I'm just looking for somewhere to go.

Birthday

This is a picture of James from my birthday last year. If anything, I imagine James was mildly surprised when at least one song was not sang directly to him. Possibly relieved.

Tomorrow is my birthday. I will be 28 years old. For perspective, that is 10,220 days. James lived 257 days, or roughly the rounding error between 10,220 and 10,000. When I was young, I made a point of celebrating my birthday as an event. Terrified of being lost in the cluster of holidays between Thanksgiving and Christmas, I made a big point of forcing everyone to celebrate my birthday independently, to recognize it as my own special day. I was a horribly selfish kid like that.

I don't want to celebrate this year. I've been lucky so far. Only my secretary noticed the sign in the break room at work. Friends and family I can limit to text messages, or better yet, facebook posts. When someone asks what I want, I direct them to James' fund. That tends to deflect them quickly from asking what I want to "do" for my birthday. I simply want the day to pass.

There's no achievement here. If anything, my birthday is a reminder of the fact that somehow despite all of my many mistakes, I'm really doing just fine. I will be completely ok this year, and probably the year after. Without trying particularly hard, I've managed a little over a quarter of a century on this Earth. Looking back on it, I've wasted a good many of those. I never really felt that way before. There was just no sense of urgency.

One of the "grief" e-mails I got today encouraged me to write about my anger "to unload some of that pressure." That's how my birthday makes me feel. I'm angry. I'm angry that I don't have my son to celebrate it with. I'm angry that I get to nonchalantly cruise through the years when he barely got months. I'm angry about the e-mails in my inbox directed to "James Sikes" wishing him a happy birthday and offering him a good deal on a birthday dinner or bottle of wine. I'm angry at myself for filling out the forms with my first name. I'm angry about all of the time I feel like I wasted when he was here away from him. I'm angry that he never really had a chance, after all we put him through. I'm angry I can't hear him laugh, and that I've memorized all the recordings I have of him laughing down to the second. Above all, I am angry without purpose, because I'm not prepared to deal with the alternative.

Some days are better. Some days I'm grateful for the time we had. And I am. I would never wish that James were not a part of my life. Holidays and events have an unfortunate tendency to remind me that he isn't, and focusing on that rarely ends well.

In other news, I'm slowly making way through the comments. I'm in June now. At this rate, I'll catch up with the current entries sometime next spring. Looking back, it's amazing how much support we had even in those early days. Thank you.

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.

Thankful

Here is a picture of James from last Thanksgiving. He was thankful for his Daddy. I think Kara dressed him in that because she knew if it said Daddy I'd be more inclined to allow my son to wear a shirt prominently featuring a Turkey. She was right, though if push came to shove I think we both knew he'd be wearing whatever she put on him, no matter how bedazzled. He was very cute, though I'm sure he had no idea what all the fuss was about.

I am thankful for the eight months and seventeen days I got to spend with him. I am thankful for his hair, his smile, and his laughter. I am thankful for the way he used to tug at the buttons of my shirt, perplexed that they were too flat to my chest to pop into his mouth. I am thankful for the soft way his chin rested on my shoulder during naps, and the rhythmic feel of his chest rising and falling with each breath against mine.

I am thankful for all of those small things, snatched from time, preserved for eternity. James and I reading from my Kindle together at two weeks old. He wouldn't stop crying no matter how much I walked him, rocked him, or cuddled him. I tried reading to him from one of his books- he had a library- but I needed one hand to hold him and couldn't quite master the art of holding both the book and James in a way that allowed me to turn the pages. So I picked up my Kindle and read Michael Lewis' "The Big Short" with him, as I only need one hand to turn the pages of the Kindle. He fell asleep during a discussion of bond tranches. If only I'd known finance was the answer to begin with. A little over six months old at the Arboretum. Kara was sick so we took a Daddy and James solo trip. We laid out on a blanket together. I attempted to take pictures but failed, James looking on in bemusement as if to remind me I should know better than to try a photoshoot on my own. We moved on to food. James wasn't interested in his food, but he liked the taste of the lemonade I bought out of the vending machine, which I know perfectly well I shouldn't have let him try. I was never a great disciplinarian. If I had it to do over again I'd have bought every drink there and let him have a sip.

I am thankful for all of these things and more. We've received a lot of support since James got sick. I've been overwhelmed at the generosity and kindness of strangers, from the giraffe contest to the notes that continue to trickle in months later. I went to the Starbucks on Northwest Highway a few weeks ago. Kara and I went through the drive thru the day after James died. In the cheerful way of baristas everywhere, the clerk asked us how we were. I think I stuttered to "not great" while desperately waiting for her to hand us the cup. She cheerfully asked why and I told her our son just died. I still remember how shocked she looked, and the awkward precision with which she rushed our cups out afterwards. When I went this time, a different barista took my order, but as I went to grab the cups, there she was, rushing up behind the barista actually handling my order. She said she'd been thinking my wife and I, and she hoped we were doing better. There've been a lot of things like that I'm grateful for, people have no cause to know us or think of us who have gone out of their way to help.

I wish I could say all of that made today easy. It did not. The holidays remain difficult, littered as they are with opportunities for you to imagine what should have been, no matter what is. I miss him everyday, some days more than most. Still, I'm more thankful than not. I was blessed to be James' father. I couldn't ask for anything more.

Thank all of you for all of your support this year. Your prayers, your thoughts, and your words. Enjoy the holiday and your families, and thank you for thinking of ours.

The sun is starting to peek out

So this week has been relatively better.  It's the first week that I haven't just felt numb most of the time- which is good!

My emotions still go all over the place.  But I would say that this week the lows aren't as low.  I didn't go to the cemetery on the 16th.  I really don't know what to do out there.  And I don't like that the 16th of every month reminds me of James' death.  Just like on Saturdays I can remember that he died on a Saturday.  I'm trying to reframe those days so they aren't so debilitating, if that makes sense at all.

The past few weeks I have been trying to figure out what the future looks like.  For a while, I honestly wasn't sure that I cared.  Every moment of joy that I had over the last several months made me feel immediately guilty.  Because I shouldn't be feeling any happiness- my baby died.  So why should I laugh? 

I'm starting not to feel as guilty about things like that.  I still do from time to time, but the time in between is getting longer and longer.  Which I think is a good thing.  I don't feel like my sadness is all-encompassing as much.  I mean, it's still there, definitely, but it's not as debilitating.  I know I keep using that word, but that's what it felt like for a while- debilitating, disabling.  Almost like I needed a handicap sticker placed on my entire body.  Or a sign that says, "Tread carefully.  Extreme emotions ever present."

I know that there are bound to be days where it feels worse.  But I'm starting to recognize that there are days that feel better too.  And both of those are ok. I don't want the 16th of every month to be a reminder of what I lost.  Because I had 8 other 16ths with James that full of the most special times.  Or maybe not special, they may have just been  typical days, but now those average days I cherish. 

I, of course, still miss my Jamesie.  There isn't an hour that passes that I don't think of him.  And sometimes there are 60 minutes in that hour that I am only thinking of him.  This week I ate lunch at Panera.  And remembered that last time I went to Panera with James, my mom was in town.  I happened to order the chicken noodle soup (It has the least amount of calories and I was trying to be healthy.  I really wanted the baked potato soup!).  The last time we were there, my mom had ordered the chicken noodle soup and James ended eating all of the carrots and noodles from her soup. 

It made me sad at first, but then I remembered the look on his face as he just went after those carrots and noodles.  He had always hated the mashed carrots in the baby food jar, but he decided he liked these.  He really did not like mashed up food in general.  Once he realized that he could pick up food, like bananas and avocados, he enjoyed eating much better. 

Thank you for being so supportive and listening to my ramblings.  I feel like I always write when I am sad, and tonight I'm not completely depressing!  These pictures are from right before Thanksgiving last year at the Arboretum.  James was 3 weeks old.  He wasn't as in to the pumpkins....but he was only 3 weeks old!

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.

11.11.11

I was a bridesmaid this weekend in my friend Amanda's wedding.  She looked so beautiful, and the wedding was her perfect fairy tale.  I was so happy for Amanda and Evan, but I had so many conflicting emotions going into the weekend.

When Amanda asked me to be a bridesmaid, my life was so completely different.  It's almost like my life has three stages now- before James, with James, after James.  I made the hotel reservation the week that James was throwing up.  When I pulled up the hotel confirmation this week, I realized that I had made the reservation with a requested crib.  Because even though James had been throwing up that week, I truly thought that it was a bug.  I would have never guessed that he wouldn't have been there. 

I thought I would put some Jamesie and Mommy pictures up.  These are from Easter Sunday. 

And so the reservation sort of sent me into a downward spiral.  Last Friday, I finally tried on my bridesmaid dress.  I had picked it up a week or two after James died and it had been sitting in my closet ever since.  I keep thinking about the day I ordered it.  James and I had driven out to Firewheel in Mesquire (for those of you Dallas people).  It was the closest Alfred Angelo store.  I assumed that the store opened at 10 and didn't check the times.  It opened at 11.  We got there about 10:30 and had time to kill.  We went to the Starbucks next door where the barista guy smiled and made James laugh.  

We then decided to go hang out in the backseat of the car because James was hungry.  So I fed him in the backseat (which I swear the whole world has seen my boobs at this point).  I accidentally left my coffee cup on top of the car, and so everyone that walked by noticed first the coffee cup, and then James and I in the backseat waiting.  The store opened, and I grabbed a few dresses to try on.  James ended up playing on the floor of the fitting room, but was over it pretty quickly.  I chose the first dress I tried on, paid, and headed out into a pretty large storm.  I remember calling my mom and asking her to look at the weather to make sure that I should really start to head home.  Precious cargo in the backseat.  James slept the whole way home and we made it safely home. 

For some reason I remember every single detail about that morning.  I remember what he was wearing.  A blue Polo romper onesie.  I had meant to put on shoes, but they didn't quite make it on that morning.  And it was warm, so no big deal.  Hair partially sticking up, like always.  Gummy smile. 

Little moments like that, forever ingrained in my mind.  The simplest of tasks, yet those are the moments that summed up our days.  I like remembering him this way as opposed to sick in a hospital bed.

At the reception, a woman (I think she could have been the grandmother) headed out to the dance floor with a baby boy about how old James should be.  And then I lost it.  I hadn't cried all weekend, and then I just lost it.  I spent a considerable amount of time in the bathroom crying.  I just really thought that he was going to be there.  I still can't believe that he wasn't.  He should have been.

I posted on facebook about that last part.  I know alot of people try to say the right thing, and I understand that.  I know that so many people want me to have another baby immediately, and that they think that encouraging me in that direction is the right thing to say.

But- and I mean this in the nicest way possible- I am absolutely, unequivocally not having another baby in the near future.  There are so many reasons why.  I'm hesitant to list even one of them, because someone will have a rebuttal for that particular reason, and then it will just go on and on.  I really wasn't going to even say anything about it, because it really isn't anyone's business, but there have been so many comments lately about it that I feel like I need to say that. 

I know that many people won't understand that, and that's ok.  But my hope is that you all won't place judgment and know that this isn't a spur of the moment decision.  Bringing a child into the world isn't something that should be decided on a whim.  It's a lifelong commitment, for however long that life lasts. 

So I think I need to revise my list about things not to say to people grieving the loss of a child.  I think number one on mine right now is "You can have another baby" or anything along those lines.  Or anything that has to do with bringing or doing things with another child.  Because I don't want to do those things with any other child.  And to imply that it would be the same to do those things with another child is saying that James wasn't unique for who he was.  I don't want to dance at a wedding with another child.  I want to dance with James.  I want to see the expression on his face as I dip him to the ground.  Or as we shimmy and shake.  Or how his eyes follow the lights across the ballroom.  Or maybe how he might have been walking now and see him walk across as people danced.  I don't know what he would have done. 

And I know that no one means those comments to be hurtful.  It's just that I find now it's better when I sort of let people know when comments bother me. 

Did anyone make a wish at 11.11.11 at 11:11?  I'm still waiting to see if mine comes true....

Days

Below is something I wrote the Day after James' funeral. I still keep a journal, and this is what I wrote that day. I was looking over it tonight and one line struck me. Back then, almost four months ago, I wrote that I didn't have a time table. When I read that tonight I started to wonder if that was changing, if in the intervening months I'd decided that there was a time I was going to allot to this, the same way I might schedule a meeting or plan a budget to buy a new car. I've always found a certain degree of comfort in schedules. I like to know when and where I can expect to deal with something and prepare myself accordingly. When I read this tonight it struck me that I still, after all this time, have no timetable. I can't even schedule when or how I think of James, whether it's smiling when I stumble upon a giraffe walking stick we got from the zoo, or freezing when I open my trunk and see the base of his car seat still there. For some reason I was fine taking it out of the backseat but couldn't bear to take it out of the trunk. So now I just don't use the trunk. I don't even have a timetable for when I'm taking that out, let alone when I'm going to deal with everything else.

What I am beginning to realize is that perhaps this never ends. Perhaps I'm not going to "get over it." Perhaps I'll just live with it and manage it. I don't necessarily mean that in the sense that I will lead the rest of my life morbidly depressed, but in that James and his loss are never going to fit into a neat, compartmentalized box in my life. There is never going to be a file I can index and store for this, it's always going to be there, the good and the bad. I've come to believe this isn't necessarily a bad thing. James was an amazing gift, and it was the highest privilege I have ever known to be his father. I don't want a timetable for getting past that.

The picture is a James "self-portrait" I handed him my phone with the camera on and let him play with it. He took a few select shots of himself on accident and this was one of them- he's trying to put the phone as close as he can get it so that he can get at the baby in the picture. I loved watching him do that, and I like to remember things like that, the way he played, his objectives. I don't want to forget those things.

Thank all of you for your continued support and prayers. It's been very comforting over the last few months to hear from all of you.

Day Twenty Nine

Today marks either the first day of the rest of my life or the last day of the best part of my life. I suppose it's a question of perspective. After James' service yesterday, family has slowly migrated home, back to their jobs and their lives. Friends have faded, though still supportive, the sense of urgency fades. James is buried, commended to the earth and claimed in faith. All that remains from now on is what we do with ourselves. We are left to grieve, to mourn, and to recover as best we can.

I wish I could say that I spent the first day of this new period well, meditating on James life or reflecting positively in some way. God knows I would have liked to. Instead, I did virtually nothing all day. I woke. I dressed. I showered. Each act took too long, a little more time than you might expect. Forty minutes to get out bed. 20 for the shower and getting dressed. Pauses were long, and frankly I completely lost track of time on several occasions. Focus comes irregularly, and all too often sharp on the wrong images. The background picture on my phone. The cluster of toys on the hearth, still unmoved. We haven't gone through anything yet.

I went to dinner with a friend I'd scheduled yesterday. Thai food, drunken noodles with a touch of spice but nothing overwhelming. If I hadn't scheduled the dinner yesterday I seriously doubt I would've done anything at all today. And maybe that's ok. Maybe there is no time table for what I'm doing here, maybe there's no way this ought to look. Kara and I both love schedules, exact timetables we can rely on and trust completely. I am obscenely punctual. But we can't schedule this. And so I lose days in the cemetery, days I never even knew were there. It's humbling, and incredibly enlightening at the same time.

Halloween

This is the only picture I have of James from Halloween last year.  One of my many regrets is not dressing him up in a costume last year.   I know it's not really important, but I now I wish I had.

I didn't expect today to be so hard.  Really, I thought Saturday was going to be the worst day.  And today was just really bad, and maybe its because I didn't expect it.  I barely moved from the couch today.  The only times I got up were to let the dogs in and out.

I don't even know what I watched on tv, though I am sure it was on all day.  I really don't know what I did.  I know I kept getting on facebook and seeing the (what seems like) hundreds of adorable kids in their adorable costumes.  And with each lady bug or monkey I just sank lower and lower.  Sometimes I think I should just cancel my facebook completely!  I tend to compare myself to other people alot, and it really only makes me feel worse about myself sometimes.  Does that happen to anyone else?

One of my classes got canceled, and so I was home during the typical Trick or Treat time.  I was really planning on being gone so I didn't have to deal with it.  I hadn't bought any candy or decorated.  So I was the Grinch this year and sat on the couch, lights off, shades drawn, with no candy to give out. 

I think I should have known that I was upset about Halloween.  A few months ago, some people at church had asked me to help chair our Fall Festival.  I just couldn't.  I knew that it was the day after James's birthday, and I just couldn't bear to see all the kids in their costumes when I never had the chance to even bring James to the event.  And as it got closer, I couldn't even bear to hear about it.  And I know it's terrible, but I just can't deal with it.  I didn't even ask my friends what their children were dressing up as. 

Some days I just feel like I don't function at all.  Maybe if I had somewhere I had to be today it wouldn't have been a total loss, but the days I have no plans seem to be the worst.  Sometimes I can just sit and stare for hours and accomplish nothing.  Tomorrow I have several things I have to do, so hopefully I can make myself go do them. 

Tomorrow is All Saints Day.  I've never even thought about the day, other than in Spanish class in high school when we had "Dia de las Muertos" parties.  I read somewhere  that All Saints day is supposedly when some people believe that the space between Heaven and Earth is closer, and therefore more signs from loved ones are seen.  Well, I'll be honest, I would love a sign.  What I would really love is James to appear and tell me that he is ok- great even- and will just play with his angel baby friends until I get there.  Maybe he will. I have to hope that maybe I one day I will get a sign. 

Sometimes life is funny.  If you had told me 6 months ago that I would halfway believe that on November 1st the barrier between Heaven and Earth was thinner, I would have told you that it was all bull and you are crazy.  Now I think I just grasp at anything that could give me the chance to see James again. 

Like I said before, nothing in my life is black and white anymore.  It's all gray that might possibly make me slant towards the loony bin.  Even typing it, I'm thinking "Who the heck would believe that?!" 

So I hope everyone had a good time with their little ones today.  But tomorrow, on All Saints Day, would you mind saying a little prayer for my little one? 

Winston and Maggie

First,  thank you so much for all the kind comments, texts, emails, and facebook messages celebrating James's birthday.  I am so thankful that you all remember him and his birthday.  I appreciate the fact that so many of you are celebrating his life.  Thank you from the bottom of my heart.

So, yesterday has come and gone.  Matthew and I went to the zoo and saw Jamie with some sweet friends.  I know most of you are sick of hearing this, but I have the greatest friends.  Truly.  Some friends I have made this past year, and others I have known for 15 plus years and everywhere in between.  They are amazing.  And then my Mom was in town also, and she and I went out to Denton to take Jamesie some balloons.  So thankful for my Mom who lets me cry and be angry and then be happy and sad all within a 2 minute time-frame.

I've been a little preoccupied with myself lately, and it hit me not only did I lose my only child, but my parents and Matthew's parents all lost their only grandchild also.  My mom went from being GiGi- which she still is to the doglets- to not having a grandson to play with.  James just loved my mom so much.  Between my mom and my brother, they could have James laughing when he was in the hospital in no time.

This is my mom and James, with James laughing at my brother.  I think he was doing funny faces or something! 

James and Maggie.  Kisses from Maggie are a rare occurrence. 


James and Winston.  Winston gives everyone kisses. 

Speaking of the dogs- I feel like I should talk about them for a minute.  The pugs are Winston, who is 6, and Maggie, who is 4.  Matthew bought me Winston for my birthday our senior year in college.  I adopted Maggie in 2008 right after Matthew had left to go to Albuquerque for the summer to do a clerkship.  In retrospect, it was terrible timing, and the summer of 2008 I used to refer to as the worst summer of my life.  And then Summer 2011 happened and it pales in comparison.

Winston and Maggie are best friends.  Winston used to be the alpha dog, and then Maggie came and took her rightful place.  He was never that great at the alpha dog part anyway- he never had a chance.  Winston is definitely show-quality, slightly flamboyant, possibly autistic(but definitely high-functioning) and has a love of large, black, male dogs.  Seriously.  Maggie on the other hand is loud, has hip dysplasia, territorial, and is a tease.  They are a lot like Will and Grace. 

So when I was pregnant, I worried about how Winston and Maggie would take a new baby.  Maggie barks if any baby cries on the tv, and Winston's "spot" is my lap.  I bought a baby doll and practiced holding it and keeping the dogs away.  It didn't work.  But as soon as we brought James home they settled down.  And the bigger he got, the more they liked him.

And oh, how James loved the dogs.  He thought they were hilarious.   This video is one of my very favorites.  You have to watch it.  And I never say that.  But it's just so adorable. 

So I miss being able to play with all of them.  They were such a good team.  And now I don't even know if Winston and Maggie realize he's gone.  I know on some level they must know.  They don't go into his room ever, even though the door is open and they used to spend so much time in there.  Winston used take any opportunity to take a nap in the rocker.  It's just so strange to me that they don't even walk in there from time to time.


And I feel like I can't explain to them what has happened.  Just like I couldn't explain to James what was happening.  So I'm at a loss of what to do.  Winston has regained his place on my lap.  Maggie, who had stopped barking at the babies on tv, now barks at anything and everything.  Maybe they know, but don't even know what to do.  I guess that's how I feel, so I can't really blame them.