Today is Julia's birthday. She turns six. She has been an emotional wreck for the last several days. I think that there are a lot of things contributing. She was sick and out of school (she needs school to keep her occupied and she loves it). Then Monday was a school holiday. I try not to project how Nathan's absence impacts my day-to-day well-being on Julia, but I also think that she is seriously struggling to comprehend what her birthday celebration means to her without her brother.

She has been a lot more vocal about Nathan and expressing how she misses him and wishes he had not died. Most of the time she is pretty matter-of-fact about it all. I think that part of it is that she hasn't had her grief group in several weeks, so she hasn't had that outlet. I really think part of it is also tied to her birthday.

I pray that she is able to feel his presence at some point today, and know that her brother loves her and is celebrating on her day.


A grieving sister's prayer request

Julia gets a children's bulletin every Sunday at church. It has a place to draw a picture, some games and activities, and a place to write a prayer request. The last two weeks she has written essentially the same "request"/prayer. This week's looked like this:
I wish my bruur did not did.


First Baldrick's post of 2008

Susan and I were talking about St. Baldrick's at lunch and it occurred to me that a group of friends had already started up a team to participate. This is a good organization and they raise money in a very fun way. There are all kids of events. I've attended two and both were at Irish pubs. That seems the way to go.

This is my first heads-up. I'll probably post more as the dates get close.

Nathan's Network is a group of friends formed by Baldrick's veteran Matt D. The team is geographically diverse. Matt participates at Fado in Chicago. Nathan attended there one year and took a few swipes at Matt's hair with the clippers. It looks like Matt will have a good group there with him this year. Some of the team will likely be shaved somewhere around Phoenix, Seattle, and maybe other locales.

There are currently two other (outside of Nathan's Network) shavees signed up in honor of Nathan. I don't know either of them. Susan has had some correspondence with one of them. You can find all shavees honoring Nathan here.

Some regular readers here are annual contributors to Baldrick's and have already donated. Thanks to everyone participating either through shaving/cutting or making contributions. Susan and I are moved by your generosity, and even more by your desire to honor and remember Nathan.


My sick girl

Julia has been sick for a few days. In the past, Susan has had a difficult time emotionally when either of the girls gets sick. I understand that, but it isn't something that has hit me. Julia was feeling better today but still a little sick and Susan took her out and about on some errands she needed to run. I wasn't there. Susan may or may not blog in detail, but Julia got excited about something in the grocery store and fainted. Since then she has felt a lot better and the doctor doesn't think it was anything at all.

I was having a really hard time seeing her sick and curled up on the couch before she had fainted. I'm glad she is feeling better and playing and not acting sick. I'm glad for her, and for me too.



Nothing specific today to post about, other than to just comment how it has been a pretty rough time as far as news for other NB families that we know. A wonderful little girl from a truly loving and giving family that we met in New York has relapsed. A family whose little boy has chemo-resistant NB has just found out that their 11 week old daughter may also have neuroblastoma. It is uncommon, but not unheard of for more than one child to have NB.

Every time I hear this type of news it makes me sick to contemplate the suffering of so many beautiful children and their families.


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.