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.

Giving thanks and being blessed

Thanksgiving has come and gone. We traveled and had a nice trip. The holiday was spent with family and we had a nice time, but when I tried to reflect on what I had to be thankful for, it was very difficult to truly feel thankful. It wasn't hard to come up with something. I'm clearly always thankful for Susan and my beautiful little girls. Those things sprang easily to my mind, but in my heart I couldn't really feel thankful. The gaping hole there swallowed up any real emotion. It wasn't a sad holiday by any means, which I suppose is something to be thankful for, but it wasn't a great one either.

In contrast to Thanksgiving, where I tried to be and feel thankful, this past Sunday morning I had the first genuine moment of quiet contentment that I can remember in a long, long time. Susan had left for church to warm up with the choir. Julia was dressed and ready for church early and sitting in the dining room drawing pictures and singing to herself. I sat in the kitchen with the paper and a cup of coffee with Lauren sitting happily in her high chair eating breakfast. Both girls were being loving and I felt very distinctly blessed to be having a quiet morning with my daughters. "Blessed" was the word that sprang to my mind sitting there to describe the warm feeling I had. I almost immediately felt the pang of loss and of guilt for feeling blessed under the circumstances. I know that is irrational. Wallowing in the pain of loss in no way honors Nathan or is what keeps his memory alive. I know that, but it can be very hard to accept. That good and warm feeling, however brief, was wonderful. I hope to have more of them.

Later Sunday morning at church our pastor was preaching on the beatitudes from the Sermon on the Plain in Luke, "Blessed are...". I listened carefully given the word "blessed" seemed to be working it's way into my day. He talked about the Greek word that "blessed" was translated from and dug deeper into the Aramaic word that Jesus would likely have spoken. I can't recall the exact translation he gave, but it was something like "on the road to". On Thursday I couldn't make myself really feel thankful, but for a brief, warm moment Sunday morning perhaps I found myself on the right road.

Since I have been so quiet on A Night in the Box and Cancer Dad, I'm cheating and cross-posting this to both.

Graveyard

Nathan's ashes have been interred. So many decisions to make through all of this. So many of them linger in terms of wondering if the right thing was done, or said, etc. This one feels right. It's odd actually to have done something through all of this that feels right. Almost everything feels so wrong. Susan put together a really nice post with some pictures.

Here are the lyrics to a Loudon Wainwright III song. His music really resonates with me. I've known this song for a long time, and I've always been struck by its simple approach to tackling such a complex emotional thing as mortality. There is also imagery here that really strikes home. He writes of playing in a graveyard as a boy and of the wind beneath the graveyard trees. I remember playing in and near the small country cemetery near the church back where I grew up. It pleases me that, while much bigger, the cemetery where Nathan has been laid to rest has the same type of old cemetery feel...with the wind blowing beneath big trees.

Graveyard
Loudon Wainwright III

I go to the graveyard
Where we all must go
Among the dead and buried there
Just so I will know
What it's like beneath those trees
Listening to that wind

I go to the graveyard
ANd I'll be back again

I played in the graveyard
When I was just a boy
I'd run among the headstones
Myself I would enjoy
But I was young and hardly knew
What would happen then

I played in the graveyard
And I'll be back again

I walk through the graveyard
I read the headstones
So many dead and buried there
Each one all alone
An old man and an infant
And a little child of ten

I walk through the graveyard
I'll be back again

My father's in the graveyard
My dear mother too
I visit them with flowers
What else can I do?
I go to the graveyard
To remember them

I'm an orphan in the graveyard
And I'll be back again

I go to the graveyard
Where we all must go

Fall

Haven't been able to find words. So...

2000

2002

2007

Group grief

We have attended two group meetings facilitated by counselor for parents who have recently lost their children. I know that I have written here before about how torn I always was on how closely to read other children's stories or how close I wanted to be to other parents through forums and such. I was very skeptical about how much I might get out of these group sessions versus how painful they might be.

After two meetings, I'm pleasantly surprised that I get something out of them. I don't hold hope that they will help in any great way to heal this wound or to hasten through the worst of the grieving process. I certainly wouldn't say it was a fun way to spend 1.5 hours. I have, so far, gotten something positive out of just talking to people with this awful shared experience. I have spoken and chatted with friends about what my days are like and the challenges I face to make it through them. When I have, I have received love. I have received sympathy. My friends have given me what they can and should as friends. But they haven't nodded their head in understanding. They haven't been able to say, "I feel or do the same thing". It is an odd thing. Intellectually I know I'm not the only one feeling this way or struggling in that way. Intellectually I don't think that I need confirmation of that. But when I sit with these other grieving parents and see their heads nod when I talk about struggling through a workday, or I can relate to the things they say, then something clicks. I can't say that thing that clicks is something that feels good, but there is an odd sort of comfort that it provides.

More everyday things that hurt

I do the bulk of our laundry. I let it pile up throughout the week and typically just do mass laundry on Sunday afternoon. Over the weeks since Nathan died the number of items of his (clothes that had gotten stuck under a bed or pile of junk, or sheets/towels/etc) had dwindled. I think that yesterday was the first laundry day that I didn't process a single item that I identified with Nathan.

All the time

Julia is in Kindergarten now. One of the consequences of this is that she has graduated from the nursery at church to attending "big church" with me. We have now done big church together two or three times and she does great. The hour is a long time to sit quietly but she enjoys parts of it. I can tell her feelings are mixed on it.

As we were driving to church yesterday she talked about how she liked going to big church with me, but that some things were more fun in the nursery. I explained that I understood that but told her how much I enjoyed having her with me. I explained how it was a time with her that I really cherished. And I explained to her how I had loved spending that time with Nathan and that during church I felt sad and missed him a lot and how having her there helped me feel better. She said, "I miss Nathan a lot all of the time". It wasn't the voice of a little girl trying to one-up me by saying she missed him "all of the time" when I was talking about missing him during a specific event. Julia is coping right now by avoidance. It isn't that she won't talk about Nathan with us. She frequently will make comments to me about him, but she won't talk about it long. For the most part she is outwardly doing well when she is busy with school, church, swimming lessons, her new dance lessons, and etc. Her sweet little voice and the message it carried underneath as she said, "I miss Nathan a lot all of the time" really hit me. It is impossible to explain really, but I feel Nathan's loss every minute of every day. It doesn't really matter what I'm doing. It doesn't really matter if I'm avoiding it or actively wrestling with it. It is just always there. I could be projecting my grieving onto Julia, but I don't think so. I think she was expressing this type of constant ache as best she could.

I'm sure it reads like I read too deeply into one simple sentence from a five year old, but I don't think so. You parents out there know that you can tell from tone and delivery when your kid is trying to just outdo you rather than making a simple sincere statement.

Everyday things that hurt

I hate setting the table for dinner. I never used to hate setting the table. I know Nathan will always be a part of our family as we all carry him in our hearts and in our memories, but when things come up that make me count or recognize the number of family members present physically, well that just hurts. There are supposed to be five places set at our table. Five. Not four.

Hess

I played in the basement with the girls yesterday afternoon. I wouldn't have been able to do it, but I got out of the house yesterday afternoon for some me time. Julia had all of Nathan's Hess trucks out. It was very difficult for me to play with them. Nathan really loved those trucks. I have to admit they are really cool. And I closely associate them with last winter's hospital stay in NY. That is where he accumulated a lot of them. So not only were they toys that Nathan really loved, but they also bring up bad hospital memories. Julia has been so starved for a playmate and it was encouraging to see her want to do something other than play computer games or watch TV, so I settled down and we played a little game with Nathan's toys. It was tough at first, but got easier. And Julia and Lauren both smiled and laughed a lot.

Dream

Susan was fortunate to have a nice dream one night about Nathan. I share a bed with her, so I know that her nights aren't usually good like that one. I hardly ever remember my dreams. Over the last few days/nights I've come to the realization that I'm having a recurring dream. These are the ones that I eventually become aware of. They happen over and over again until I begin to be aware of them and the longer they replay the more I tend to remember. Yes, it is a bit like one of those Star Trek eps where the crew is caught in a temporal loop and finally realize it once the deja vu feeling becomes overpowering.

Each night I wake up and I have dreamed Nathan's death. It is strange though, because the details are all wrong. I won't go too much into the details because it is really pretty terrible, but things are different than they really happened. For example, in my dream it is nighttime instead of morning. Strangest of all may be that in my dream he dies on Susan's birthday.

This is a dream I could do without remembering and one that I wish would stop replaying each night.

Hanging In

I've gotten a few emails lately from people checking in on me. All of them have noted my lack of blogging as of late. There are several reasons I haven't posted much. First and foremost is that there just aren't any words. It is all too overwhelming to capture. There is also a practical reason for my infrequent blog posting. I don't tend to spend a lot of time in front of my computer unless I'm working, and I haven't really worked for a couple of months now. I'm easing back into work today and in front of my computer. Most of my blog posting comes when taking work breaks, so perhaps the pace will pick up a bit now.

It is impossible to answer the "How are you doing? No, I mean how are you really doing?" questions. I normally say something like, "As good as could be expected", "We are getting by", or the ever-popular "Okay". Nathan died two weeks ago yesterday. I really am glad he isn't suffering anymore, but in general I don't think my pain has subsided at all (and I don't expect it to have subsided yet). Mostly I just miss him. And "miss" in this context is such an inadequate word. I walk around with this terrible sense of wrongness. And I still feel a lot of guilt/pain/confusion/etc over the decisions we made and care we gave over his last few weeks (If anyone remarks in the comments about what a great job we did or about what great parents we are, blah, blah, blah...then I am likely to disable comments forever on all posts to this blog.
That is the last thing I want or need to here from anyone.)

Yesterday I did some basic putting toys away in the basement. Our basement triples as my office, a playroom, and a guestroom. Over the last few months it had gotten completely out of control. I wept as I sorted toys. I would remember playing with a particular toy with Nathan. Or I would pick up something I know he had an attachment to. The worst was when I ran across his wallet laying on the floor. He received cash gifts over the years and had a good chunk of change saved up. In June it was obvious that if he was going to enjoy that money it was time for him to spend it, so he took his wallet and we went and bought Playmobil toys. He had five or six dollars left after the shopping spree. I'm sure no one is ever really ready to "go through their loved one's things", but I know I'm not anywhere close yet based on the exercise of just sorting toys in the playroom.

Today is Julia's first day of kindergarten. She is adorable and excited. I think she will thrive in school. I know she needs the routine and the activity. Our home environment hasn't been all that healthy for her as of late. I was really happy taking her to the bus stop, but also sad that Nathan wasn't returning to school. Julia had always counted on her big brother showing her the ropes of the school bus. I feel bad for her a lot. There are so many things I want to just be completely happy about sharing with her, but so many of those things have to be bittersweet because of Nathan's absence.

I'm not really sure how Julia is. I try and give her lots of opportunities to talk or work things out, but she generally avoids the subject. I noticed her erasing Nathan's saved profiles from computer games they shared. She just shrugged and said that he didn't need them anymore. I was worried about that trend, but she has done some things lately that I find encouraging, like including Nathan in pictures she has drawn of our family. I want her to grieve and to do so age appropriately, but I don't want her to try and forget about her brother. I'm sure she never could though. What a terrible thing for a child to deal with. I don't know how to act based on my crazy emotional state. What sense can a child make of it?

We have been flooded with cards and letters and just a whole lot of love. I can't thank people enough for their support. It really is amazing. Thanks to everyone who was at Nathan's memorial service, especially those that traveled or held down the fort at home so that others could travel. I'm still a bit in shock over how many people came from great distances to show their love and support for our family. Many thanks.

So...I'm here. I'm hanging in there. I'm doing as well as can be expected. And I'm okay.

Impossible

It is impossible to explain what it is like to watch Nathan slipping away. Some of the routine begins to feel normal, like this weak and withdrawn Nathan is the "real" Nathan and then little things creep into the day that really hit hard. Some of them just rip out your heart like seeing him reach out to hold his baby sister's hand when she comes to sit next to him while he lies in bed watching TV. I tend to feel so profoundly sad over the tender moments like that. Lauren is one. My earliest sketchiest memories begin at around three. She will grow up hearing about Nathan through us, but she won't have her own memories of her big brother.

It is also so hard to see him struggle to do things that he should be able to do. I just watched him wear out from putting about five or six pieces of Legos together. He had to push on some of the pieces pretty hard. I could see the tendons straining in his rail thin arms. It seems that he sometimes has a hard time focusing on the pieces to get them in the right place. He said he wanted to finish putting the helicopter together tomorrow and closed his eyes and fell asleep.

To-Do

To-Do List:

1. Explain to seven year old son that he is dying. (The books and the hospice people say he already knows.)
2. Explain to five year old daughter that her beloved big brother is dying.

The don't teach this stuff in parenting school. Perhaps they do. I assumed I could handle the whole parenting thing without formal training.

Laugh

Nathan is sitting next to me on the couch doing something on the computer. He just let out a genuine laugh. They are few and far between...and beautiful.

Monotony

I seem to post here a lot about how I wish things were. Or rather, I seem to post about how I think about things, not necessarily how I actually feel about things. I want and try to cherish each and every one of these days, but the truth is that much of every day really does just suck. The days are so long. It is crazy how long each and every day seems. They drag on forever. I got up with Nathan at 4:30 am the other morning to do something for him and I knew I wasn't going back to sleep so I stayed up. Now *that* was an even longer day. At the end of each day I don't want to go to sleep because I know I'll just have to get up and do it all again.

I took a three hour nap yesterday. I didn't mean to. I just laid down for a short rest and crashed. I think it was perhaps one of the best and most restful stretches of sleep I've had in awhile.

Hell?

With Nathan under hospice care now, it has been hard for me to not think about the last 4+ years. My feelings are conflicted. It has been hard, for sure, and sometimes (okay, often) I focus on the negative. I have to fight that though. The last four years can't have been hell. I can't let myself view over half of the time we have been blessed with Nathan as a living hell.

As the physical and emotional exhaustion take hold now, the challenge becomes to not cheat ourselves of the time we have. Some of it will be hellish. There is physical pain. There are the early stages of grieving. There is crazy fear that encompasses all kinds of things. We have to try to turn it on and off as quickly as the changes come because we are rapidly approaching the cap on the smiles, hugs, and good times as a family of five. One of my many prayers is that we can, if not enjoy, take some comfort in those good moments we have left.