Have a new year

Susan mentioned in a post on How can I keep from singing? about someone on a grief support message board replacing "Happy New Year" with "Have a New Year". We had a good Christmas. We spent it with family. In the end, I'm really glad we traveled. I think that it would have been very difficult to feel in the spirit leading up to Christmas day here in our house. Our house where Nathan should be. Not that he shouldn't have been with us on the road, but I think it would have been harder here. Especially just the four of us before family would have arrived. As it turned out, it was hard but there were distractions and there were genuinely good times with family and friends.

Julia is in a phase where she asks the same question repeatedly. She will ask, then a few hours later ask again as if she never asked before. It is a lovely phase. Over the last few days she has repeatedly asked why the year changing is a big holiday. I had to explain over and over that it is about optimism. That people celebrate the good of the past year, but mostly they celebrate in an attempt to be positive and to usher in good tidings for the new year. It is a new start and people celebrate in order to be hopeful for good things to come. That is what I tell her. I "get" hope and the need for it. I've had hope. I've lost hope. I keep getting it back and losing it again. Those days where it is lost are very black indeed. This new year is obviously much more complicated for me than most.

It is no longer the year in which Nathan died. It is so hard to move farther away from that. I can't explain how horrifying it was to watch Nathan waste away. To know he was actively dieing. That his body was betraying him. To see him in such terrible pain. To fail in so many ways at protecting him from the worst of it all. To watch the beating in his chest become more and more irregular and finally stop. To see his chest rise, fall, and not rise again. To make "final arrangements". To prepare his obituary. To grieve. And to continue grieving and all of the messiness that comes with it. 2007 wasn't such a good year, but it is so bittersweet to see it gone. On one hand, fuck 2007. Good riddance. On the other? On the other it is so very sad to go on without Nathan. And I'm scared. I'm scared that I'll just lose more and more of him as the days go on. I read recently about the expectations that grief "gets better" with time, but that some experts in the field of parental grief suggest that over the course of quite a long period parental grief can actually get worse with time. Parental grief, to a large extent is the loss of hope for the future as embodied in our children. In this context, finding hope in the new year to celebrate is pretty damn hard.

I do have some hope. But it is too weighed down with grief and fear to celebrate.

I also keep thinking about a dear friend of mine spending his last Christmas and New Year with his dieing father. He has no idea how much I think about him. I've spent the holiday season knowing it was the last with someone I love. It sounds like he has been able to spend some good time with his dad and to make some good memories. I suspect the new year looks pretty bleak and I pray that he can find some hope. I love you, Jim.

I didn't intend for this post to be quite so bleak or to include such painful detail. I had a strong urge to scrub it for you. If anything throughout our blogging and journaling about Nathan, we have tended to scrub the details and make them sunnier than they really are. Susan and I both feel the need to protect others from the horrors. I suppose that is natural. All of this is so hard to explain. How do I explain that yes, I feel this bad and it is this hard, but that it has been this bad and this hard for so long that it seems normal? And that while it has been this bad and this hard for so long and that I expect it to remain so for awhile longer, that I still function and have hope that it will get easier and then finally better? I can't explain it. You either understand it because you have been there, or you don't. Part of why I do this occasional blogging is to perhaps give the people I love some understanding and some sense of sharing this with me. Ultimately though, I hope you never really "get" it.


JimII said...

I suspect the new year looks pretty bleak and I pray that he can find some hope. I love you, Jim.

Thanks. I appreciate being in your thoughts and prayers.

Matt Dick said...

I hope no one I know ever "gets it" again.

Tammy said...

Not "getting it" competely doesn't mean we don't love and support you completely. I appreciate your allowing us in a bit. We all care about you, Susan and the girls very much.

mags said...

through sharing your grief and your blogging you are both helping more of us than you could ever know. that maybe helps you, maybe doesn't right now, but i for one am so grateful to have someone share the traumas of losing a child.

i think you are inspirational - both you and susan to so many others.

thinking of Jim at this time, when your own heart is so heavy, is so very generous and thoughtful of you.

you are truly a very special family and nathan a special angel.

know that you are in our thoughts and prayers. mags x

Lindsay said...

Hugs! I hope this new year finds you many joys and much less sorrow, pain and anguish than the last. I can't imagine, nor do I ever wish to imagine the pain you are all going through... all I can do is support you all and know that we are here if you need ANYTHING!

Jill O said...

I keep sitting back watching my friends lose loved ones and feel so useless to them. Last week marked bad news for my manager. Yesterday marked a loss for a dear friend. Today marked more bad news for a co-worker. Cancer is such a bastard. But thank you Luke for your honesty-for sharing the ugly truth even with scrubbing. It is thru you that I have learned a tiny tiny bit of what cancer does to a person and to their loved ones. And it is thru you that I have realized I truly am useless, except to tell you I love ya and to never let you forget that. I am with Matt in that I hope no one I know ever "gets it", but I know that is not realistic.

JJ said...

Luke-your honesty is refreshing and genuine. I sit here choked up and wiping away the tears and I know-though filled with the emotions you are going through, this post is nothing compared to the real, everyday feelings you live with day in and day out. Thank you for being so candid about those feelings and letting us have a glimpse into your lives. Nathan will never be forgotten-no matter what time fades. His spirit will live on in every new year-even when it doesn't feel like it's worth celebrating and I know it's not much consolation but he's having a ball up there in heaven! And you are touching lives and hearts down here.

Curt McCormick said...

I read your blog, and as a father of 3 young boys, it absolutely breaks my heart, especially when you wrote about setting the table. That's my "chore" at night at home and I think of you when I do it now. I look at it differently now, for sure.

I work for CureSearch and we support the research of the Children's Oncology Group, to cure childhood cancer. I almost want to apologize when I read a blog like this, because we couldn't find the right cure in time for you. PLEASE know that we all know why we're here at CureSearch, and we will NEVER stop doing everything we can to find a cure.

Nothing I write can possibly make you feel better (nor should it) but I will close simply by saying that you and every childhood cancer family are in my prayers every day. I think being able to write a blog like this is postively amazing, and I am humbled by your courage.

Luke said...

I work for CureSearch and we support the research of the Children's Oncology Group, to cure childhood cancer.

Thanks for your kind words, Curt. Your organization does good work. It's important and appreciated.

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