Retired

Cancer Dad is likely retired. This was a basically failed experiment in that I expected to use it to write about Nathan's illness and then to continue to use it after his death to write about our experiences with grief. Either I don't really let things out through writing, or I just never got up the nerve to write much of the raw truth. I'm thinking it is probably a little of both. I'll probably leave this live for awhile just in case I end up needing a place, but I'll probably just mix my Cancer Dad-like posts in at A Night in the Box.

Observation

Grieving is hard (the pain, depression, emptiness, anger, PTSD-like flashbacks, etc, etc, etc).

Grieving itself is not hard to do though. In fact, it is easier to do than to intentionally work on correcting or healing those wounds caused by grief or the events leading up to it (damaged relationships, neglected relationships, forming some kind of routine that feels normal, focusing on what you have to feel blessed about rather than the loss, etc, etc, etc).

How is that for a trap? It is the most terrible thing ever and while it is natural and necessary, aspects of it continue to erode and harm. And yet it is easier to succumb to it than it is to fight it.

And I don't buy the talk about not getting through it until you "embrace it" and whatever other fluffy spins people may put on it. I get that it is natural and necessary, but it is just another necessary struggle in an already long list of struggles.

Now only if I could start fighting the fights that I want to fight instead of this one...

Reminder

This was shaping up to be a hectic and busy day before it started. We have landscapers coming this morning to begin a total re-landscape of our backyard. We are thrilled to have it done, but have just a little reason to be a bit concerned about how smoothly things might go. Susan has a busy day with the girls *and* is scrambling to prepare to leave on a trip with them very early tomorrow morning. I've got too much on my plate and we are in our most critical crunch time of any project. Lauren woke up screaming and cranky. Julia broke down and sobbed because we told her Susan can't sit next to her on the airplane at takeoff (the three of them are flying on a small jet configured with two seats on either side of the aisle). She just sobbed but couldn't articulate what made her upset about that.

So that is how today was shaping up. Then I sat down a little early to work and my Outlook calendar decided it should remind me that it is one week until Nathan's birthday. Like I needed the reminder.

Stage

People talk about "the stages of grief". The most well-know model is probably that known as the Kubler-Ross model. I don't actually know too much about the model. I do know that labeling things as "stages" seems to imply an ordered progression through grief. That isn't at all what it is really like, of course. I can identify with some of the things labeled as stages, but there is no progression. And, for me at least, I jump all over the place and revisit many "places" I have already been.

Currently I'm experiencing something that I can only explain as panic attacks. Most of the time there isn't anything specific I'm tense about. I'll just be going about my business and my heart will begin to race, my stomach will turn over like people describe as butterflies and I'll feel something like extreme tension that comes from stress. It is like nerves leading up to public speaking multiplied by 1000. Sometimes it just comes on out of nowhere, but when that is happening I can be sure that uncomfortable work situations or other interactions (with family or otherwise) will set it off. I felt this way for about 2 weeks last month and then it went away. Now it is back. And it sucks. Big time.

Brave and beautiful

I ran across this via Will Lacey's blog. For the most part I have dropped out of the world of keeping up with other cancer kids. It isn't that I don't care or aren't emotionally involved with these other kids' journeys, it is just too much for me. There are a few that I keep up with for various reasons and Will's is one of those. Will's Dad linked to a new site, Mashed Potatoes For Breakfast, for a little boy whose journey he follows. The new site is a collaboration between the cancer family and a professional photographer. This is from the about section of the site

Mashed Potatos for Breakfast chronicles Max Mikulak's fight for his life against relapsed neuroblastoma. A photojournalism collaboration between professional photographer Deb Schwedhelm and Max's parents, our goal with this project is to raise awareness and ultimately drive action to make sure that Max and other children like him win their fight and live to see adulthood.

Will's Dad says this

Because the most intense moments in this journey are not times where you stop and say "hold on honey while I go get the camera". Because of this, those moments are rarely captured, seen, or shared so by Deb's participation you will be privy to a lot of moments that otherwise don't see the light of day.

We have a few pictures from the bad times or otherwise powerful times, but not many. Most of those exist out of luck or being very intentional about capturing those moments. I think photo records of these journeys tend to be very similar to the blogs and journals that parents keep. You might think we are conveying the truth and the gory details, but most of the really hard physical and emotional stuff gets held back. There are a thousand reasons for this. Sometimes it is too painful to recount the details. Sometimes we can't help but protect the reader. And sometimes we just have to convey the hopeful aspects of this painful journey. Something that gets lost is the beauty and the bravery of these sick kids. People who aren't in the trenches can't help but find these children inspiring, but the reality is that they don't see or know half of it.

I have seen a few other photo projects. Some of them have documented the battle and one was an amazingly brave documentation of the end of life. I haven't seen an attempt at a sustained photo project and I think it is a great project and one that might not only raise awareness, but also perhaps raise the veil a bit more so that people can get more of a glimpse not only of the beauty and bravery of Max, but of the beauty and bravery of all of our cancer kids.

I'm not sure that I will be able to follow along the journey, but it seems a very promising project and a journey worth following.

Five years

Your son has cancer. April Fools!

Granted, it would have been a tremendously cruel joke, but if only...

Threnody

English
Noun
threnody (plural threnodies)
Etymology: Greek thrēnōidia, from thrēnos dirge + aeidein to sing
: a song of lamentation for the dead

I have always liked Emerson. I don't always understand his writing and oftentimes I need a bit of academic help in digging out the details of the meaning, but I often turn back to reading Emerson. Sometime in the last year or so of Nathan's life I ran across the Emerson poem Threnody. Threnody is very much a lament and attempt to dig out some type of meaning in the death of Emerson's five year-old son, Waldo. I've read it several times now. It is a long piece and the language is a bit tough for me. Sometimes I don't make it all the way through in one reading. On some attempts I don't make it through because of emotions. On other attempts I think too hard about the meaning and my head begins to hurt. Over time and reading I was able to discern and take away an understanding of the various parts of the poem, although I could never have articulated them until reading something from a paper I found online.

I wish it was as easy as lifting the conclusions of this great thinker whom I admire and making them my own, but it isn't. There is no short cut through grief. As I am reminded in a new song by a favorite band of mine, "The best way out of hell is through the other side". Emerson seems to have made it through his hell and found a type of peace with his loss. In the end, I think it is likely the only type of peace one can make with the loss of a child. It can't be overcome, it has to be made a part of yourself that you can tolerate and live with. It isn't an easy process and that is what I like about the poem. I get a sense of the Emerson's journey with grief. It isn't my journey. Everyone's is obviously different, but the similarities are clear and since I don't have the tools to articulate my journey, I point myself and anyone that reads this to his.

The text of Threnody.

Excerpts taken from "Emerson: Death and Growth", Stephen Barnes (Southern Illinois University, Carbondale).

To conclude, then, allow me to offer a brief reading of Emerson’s poem "Threnody," written as a lamentation on Waldo’s death, which I believe encapsulates many, if not all, of the above themes. The first part of the poem is a questioning. It is the work of Power seeking to understand. Emerson cries out to Nature to heal his son as it heals itself through the ongoing process of seasonal renewal. But he knows this cannot be: "Nature, who lost, cannot remake him," and he writes that, "Fate let him fall."

Emerson continues, bemoaning that he misses the sights and sounds of Waldo’s presence. The loss, however, is always the fault of the world: "Perchance not he but Nature ailed, / The world and not the infant failed." Perhaps Waldo’s genius was too much for the world; perhaps he "Brought the old order into doubt / His beauty once their beauty tried."

It may well be the case that Waldo’s Power was too great. He questioned the Form of the world through his beauty, energy, and activity. He, for Emerson, caused the balance between Form and Power to waiver. The battle, the chase threatened to come to an end. Unable to bear this possible end, the world caused Waldo’s end. In effect, he was simply too great to be supported by this mortal realm.

In the second half of the poem, the "deep Heart" answers Emerson. He is not to learn from past "tutors" but from the "joyful eye" of Waldo. The beauty of his son gives him fresh insight, a new life, in much the same way as the Christ of Scripture, "Mary’s Son, Boy Rabbi, Israel’s paragon."

Waldo, thus, has not truly left. He remains present in Emerson’s being; he is one with Emerson’s deep Heart. Furthermore, Death acted as a healer. Otherwise, Waldo’s beauty and genius would have been too much for the world, destroying all its limitations: "My servant Death, with solving rite, / Pours finite into infinite."

So despite the fact that the need for Nature’s limitations (such as his son’s disease) caused Waldo’s death, Emerson is told not to close himself off to the world: "Wilt though not ope thy heart to know / What rainbows teach, and sunsets show?"

We have no reason to despair because the world, or Nature, or Fate is "Not of adamant and gold" but is of warm, flowing, organic being. It changes and grows, "Built of furtherance and pursuing, / Not of spent deeds, but of doing."

In this way, the world and Emerson are always in process, regrowing, and recreating themselves. His suffering is thus not overcome, but rather folded into him, allowing Emerson to transcend the absurdity of his condition through the salvific powers of continuity with his past. He no longer strives to feel and forget – in other words, to overcome. Rather, he grows, embracing the horror of his loss as inseparable from his new life, in all of its wounded possibility.

Birthday

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.

Difficult

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.