Relative

Though it's often frowned upon, I've often applied the concept of relativity to my day to day life. It's intuitive, after all. I make x dollars. You are a member of the 1%. While you're certainly much richer than I am, we're both doing well compared to some. This principle is often a useful source of perspective. Applied correctly, it makes you appreciate what you have and value the things you do have. All too I've thought that we- myself no less than others- suffer from an ill-advised application of this principle. The tendency is always to notice what you lack, so often than you lose sight of what you have. It's a trite message and one I've always thought is overdone around Thanksgiving and Christmas. In the right circumstances, I think some healthy jealousy is quite motivating. There's no reason to go to do well in school or work hard if you don't want better.

Lately I've felt a lot of the wrong kind of jealousy. I catch myself watching other people's children's grow in a steady progression on facebook, while I trudge along with the same pictures, James frozen forever in time. They're learning to walk, talk, and making delightful little videos. I've blocked a few feeds. Just like James would be doing if he were here. I am jealous of the ease that seems to bless them, the casual way with which they go about their days, blissfully unaware of words like rhabdoid. Mercifully ignorant of the economics of cemetery plots and monuments. As the season turns and we drift farther and farther away from the long summer of James' illness, the fixed nature of his passing becomes even more unavoidable.

It's not that I can't, or don't want, to talk to people about their kids. Quite the opposite. I'm always pleased when people decide to have kids and want to talk about them. James was the best thing that ever happened to me, and the ending has nothing to do with that. It's great to talk to people and see how they're doing and their kids are doing. If anything, I get the impression people who know about James are less comfortable talking about their kids with me, perhaps because they fear that I won't take it well. That's not true. (Though if you make direct comparisons, as a few people have done, between your child's trip to the ER for a sinus infection and my son's terminal brain cancer we might have a problem.) I particularly enjoy talking about James. To do otherwise neglects the best part of his life, the part that had nothing to do with cancer and everything to do with his bright smile. It is important not to let the memories of James' death obscure the more important experience of his life.

Since he died, I've met a few people who didn't know. When asked if I have children, I try to give the same answer "I had a son, but he passed away." I tried saying "I don't have children" once or twice, with horrific results, including one person at a lawyer function who commented that I'd clearly looked at kids, looked at my job, and decided kids were too much of a commitment. "I have a son" is equally unhelpful, because there are no questions about that son I can answer in the present tense. So I've elected to go with the truth, because I think it's important to acknowledge and celebrate him.

So it's not a particular sense of jealousy I feel towards the individuals. I'd never wish what happened to James on any family. It's a more generalized, relative sense of jealously for the life I'm not living. I'm missing a hypothetical. My life would be more like X if James were alive. If James were alive, X would be happening. Relative to my current situation, all of these things feel like an improvement, and I feel worse because of it. I remember feeling this way in the hospital, jumping right through the ER waiting room on each of our return trips from home, jealous of all the families waiting for care, because it meant their children were in no danger of dying before their wait ended. It's a frustrating, useless feeling, but it's there.

I try and sometimes succeed in telling myself that there's nothing to compare to. James is James, and I wouldn't trade him for anything. The relativity I should focus on isn't on the life I'm not living but on the life I did- how blessed I was to meet my son and to know him for the eight months that I did. Most of the time, I do. Sometimes though, it's hard to look past the easier analogies. Maybe next year, when I notice the seasons less.

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.

Jealousy Issues

Ok...so you all like me because sometimes I am totally honest, right? 

I'm pretty jealous right now.  I'm jealous of all the people who have perfectly healthy babies.  I'm jealous that they get to wake up in the middle of the night to their cries.  I wake up in the middle of the night to emptiness. 

I'm jealous of the people who complain about their children.  Who are so tired of their children asserting their independence and personality.  And I know it has to be hard to be a parent of a 2 year old.  But I would give anything to know what would have set James off in a temper tantrum.  And I know it's silly, but I wonder what it would have been.  Would it have been what he wore?  Or a special toy?  Or shoes?  What would he have been particular about?

I'm jealous of the people who get to blissfully unaware of pain.  I know everyone has their share of problems, but there are always people you meet who just seem to have perfect lives.  They have perfect jobs, perfect kids, and it all seems to be  great.  How do you get that life?  I guess I wouldn't even know what to do in a life like that.

Ok- and I told you I am on a roll with the jealousy- I'm even jealous of breast cancer research.  I know, weird.  But I was trying to do some research on rhabdoid tumors and whether they could be caused by an epigenetic response (basically if something like nutrition could cause a change in the proteins on top of the DNA that would cause the change in the gene).  There is so little research.  So then I was trying to do some research on breast milk and whether that has an effect on your DNA.  I searched probably 15 scholarly journals for "breast milk".  Not a single article or study came up about children.  However, thousands came up about breast cancer.  And I don't think there shouldn't be research about breast cancer- I just am jealous that we know so little about AT/RT and I wish we knew more.

I'm jealous of people who get to have normal lives.  Who get to go to Gymboree.  Who get to play with their kids.  Who get to hear "I love you Mommy", even if it is few and far between.  Who get their own version of "Jamesie kisses". 

So I was watching the Little Couple tonight (Disclaimer: I watch terrible reality TV.  It's a problem that has unfortunately gotten worse over the last 3 months.) and they were talking about doing genetic testing on the 2 embryos that will be transferred to their surrogate.  They didn't want to go through a pregnancy without a good chance that their child(ren) would survive. 

And I know the pain that happens when you lose a child first hand- its awful.  And I'm not here to say whether deciding that is right or wrong for them.  But knowing what I know now about what all would have happened, I can't imagine my life without James a part of it.  Even though he's gone, he is still very much a part of my life.  But then, also knowing what I know now, I would hate for him to have to suffer.  As a parent, you never want your child to suffer. 

Maybe this experience has shown me that every decision is not always black and white.  Most are shades of gray. 

I know I am so random.  This week is really rough.  If you have an extra prayers, I would be forever grateful if you would send them my way. 

Last year when the Rangers were in the World Series, James was 1 day old and we watched the game in the hospital.  The weekend he was born we watched the Rangers, the Baylor Bears, and the Dallas Cowboys.  We watched so many sports in the hospital that I even thought at the time that this year we might have a "Tailgate" themed party and just have football on all over the house. 



Oh, how I wish we were having that party this year.  That we were the ones blissfully unaware of just how painful life could be.