Review

Here's James in his late-period mohawk stage. Very punk. It took months for his hair to get long enough that it laid down on its own.

So I'm going to try something new.

As I've mentioned before, writing in this blog has been cathartic for me. For a lot of different reasons, I'm not big on "sharing." As the quotes indicate, the whole idea is more of a concept than a practice for me. I'm the sort of person who would prefer to give a speech to a room full of hundreds of people than engage in a one on one conversation with another person about my feelings. Presented with the opportunity to talk about my feelings, my natural inclination is not to say a word or better yet to change the subject. I will do almost anything to avoid these kinds of conversation. This is not a strategy I recommend. It is simply my default strategy. I'm in recovery.

If Kara had not started this blog, it is entirely possible that outside of a few clipped and evasive conversations, I never would have said anything to anyone about this. I would have taken it all and kept it to myself, hoped to drown in it some activity or just to wait patiently until people stopped offering to talk about it. I am extremely glad that I didn't do that. Trying to contain something like this cannot work. The substance of the trauma is too corrosive, bottled up it inevitable seeps out of the container and contaminates everything. While I've had my share of setbacks in life, nothing I have experienced before even begins to rise to this level. Losing James permanently altered the fabric of my life in ways I'm still coming to terms with. Changes necessitate new strategies and in my case the shift in strategy has been for the best.

Throughout it all though, this blog has been an important forum. Despite my natural inclination, it's been very helpful to have somewhere to talk about everything, even if talking takes the form of venting, complaining, or rambling.

One thing I've often regretted is that I have not thanked you all for your patience and your support individually. So I'm going to try something new. I'm going to go back to the back to the beginning of this blog and try to respond to your comments. Over the course of the last few months they've meant a lot to me, and it seems appropriate that I respond to some of them. So we're going to give that a shot. This will also give me the opportunity to review what happened. I have not gone over those posts. Often I didn't even read them myself before Kara or I published them. Sometimes I just can't go back there. Thank you for keeping us in your 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.

Identity

Kara signed me up for these e-mails. They're called "grief share" and they are daily. The theory is that you will receive one of these e-mails for a day, 365 in total, and at the end of the year you will have learned something about your grief. Perhaps something about yourself. I am on day 11. I started late. I wonder when I get these e-mails what Day 200 will look like. I wonder about the day when day 366 comes and no e-mail arrives. Does that mean my grief has ended? Am I finished? Of course that's silly and not at all what even the e-mails suggest. I think they know very well that a year is arbitrary, in much the same way as a decade would be. Our eight months and seventeen days was. Numbers without meaning, timelines with no context.

Almost one hundred days have passed since I first posted in this blog "Day 1" before we knew anything about rhabdoid tumors, when all we knew was the white mass on James' MRI staring back at us, a frame with the title "Seven Month Old with Brain Tumor." The Doctor stumbled on the words when Kara pointed out the tumor. There was no prefatory instruction, just "Is that a tumor?" and "Yes." I remember how committed we were to not even googling rhabdoid before we knew if James had it. Even when he was sick, we had so much hope, and James was always so happy. Why shouldn't we have hoped?

They say it takes a million cells to show up on an MRI. I wonder all the time when that first cell was born, when something wrong first happened. I wonder if there was a subtle change I missed in his behavior, if there anything at all that should have let me know that MRI shot was coming. This is foolishness of course, no one predicts a rhabdoid tumor. I know that. I do not always feel it.

Today's e-mail, Day 11, reminded me of that. "Losing a part of yourself" was the title. A man whose wife died described that he felt like someone had sliced him in two with a samurai sword, that he didn't know who he was anymore. For me, the sensation is different. Less cut in half, and more hollowed out, as if someone took a knife and scoured my chest cavity, a neat little hole where the core of me used to be. The center is missing. The sensation is one of absence. Without James, free hours reappear. There is no impediment to working long hours on the weekends, no obstacle to hours of television that you never bothered to watch before. You could develop hobbies, if only you cared. All the time serves no purpose but to remind you why it's there.

I do not always agree with the e-mails. Sometimes they catch me at an off time, or I don't care for their tone. Today's though, fit perfectly. I do feel like I lost part of myself, in many ways the best of me. The e-mail says to trust in God. I am trying. I do not have the answers, but I'm trying. Ask me again on day 366.

I met several people this week who I did not know who read this blog. Thank all of you for your support, everytime someone tells me what James meant for them or that they prayed for him I am glad to know how much he was loved.

Helpful Comments

Since my last post ended up being about things people say that tend to upset me, I thought maybe I should list some of the really helpful things that people have shared with me.  And of course, grief is different for everyone, so by no means does this mean that every person who grieves wants to hear these things.  It's deeply personal, so I really don't want to say these are exactly what you should say to someone who is hurting.  But for me, they helped!
(These are from the perspective of the person saying them)

• I love James.  I love you.  I miss him. 
• I'm so sorry that he died.  I'm so sad and wish that it hadn't happened. 
• I'm keeping you in my thoughts and prayers.
• Let me tell you about the one time James...
• Acknowledging and remembering when hard days occur.(ie: I know today it has been 2 months since he died and I am thinking about you and James today.)
• James is/was beautiful/perfect/amazing... (The tense thing still gets me.  It all seems so fluid now.  He is beautiful.  He was beautiful.  I still don't know what tense to talk about him in). 
• I don't know how you feel, but I'd love to go on this journey with you.  Tell me how you feel and I would love to listen.  
• When you are ready to share, I'm here to listen.  If you don't want to then we can talk about something else.  And I recognize that the feelings change day-by-day, hour-by-hour, minute-by-minute so it's ok to feel whatever you feel. 
• You are not crazy.  It would be crazy not to feel like your world has been turned upside down. 
• Never underestimate the power of a hug!

And of course these are not all of the great things that people have said or written to me.  They are just the ones off the top of my head!  And I am SOOOOO thankful for these comments.  They seriously get me through the day. 

Ok and how cute is the reindeer outfit?  James was 7 weeks old in
these pictures, and I just love the cuteness of the socks too!

I am also so thankful that my dear friends have completely understood that everything changes at any given moment, and are so flexible with me and my moods.  I have been blessed with amazing friends that know sometimes I need to cry, and sometimes I need to laugh.  And none of them expect anything from me.  No expectations.  They are just here to journey with me, however long it takes.  I really don't know how I got so lucky that I have incredible women in my life who truly go beyond the definition of true friendship. 


So a big thank you to all of you out there for reading my ramblings!  I know they are typically random....so sorry!