Saturday, March 28, 2009

A Rant

So I'm not sure that you all realize it, but you all function quite effectively as my collective internet therapist. When something starts to roll around in my mind too long, I blog it, and it's better. And I'm beginning to get angry when I see people who are trying to express their grief, and I don't want to feel angry. So here we go.

People don't know what to say. I get that. I'm not even sure that I can give anyone advice on what to say. It's just awful.

But please don't say, "I couldn't do what you've done".

Trust me, you could. I didn't sign up for this. It's not an Ironman Triathalon that sounded like a good idea several months ago, but now we're all reconsidering.

What you're really trying to say is, "God, that is such an awful, terrible thing to happen that I can't even fathom how you are coping with life, and it must be because you are made of some sort of different protoplasm than I am, and since I'm just too delicate to handle it, it will never happen to me."

Well, you're wrong.

I don't want to do this. I didn't ask for this in my life. Neither did the holocaust Jews, or the Tsunami victims, or the last person in your town who's spouse was killed in a car accident. I'm not looking to be strong, or motivational, or have some TV miniseries made about me. I'm just like you, trying to live my life, and something really bad happened to me and my family.

And I hate to tell you this, but something really bad might happen to you too.

And to think that it can't pushes me away.

So stop saying that to me.

Instead, maybe you could say, "This really sucks, and I'm so sorry."

Because then you are still here, with me. And you're sorry, and it helps.

Wednesday, March 25, 2009


My middling cried tonight.

Next year the eldest goes to middle school. Different school times, different bus schedule. For some reason, this just occurred to my middling. She'll be riding the bus alone next year. It hurts in my chest to think that Henry would have been on the bus with her this fall, entering Kindergarten.

"Will I ever see her again?" she mumbled, big tears on her cheeks.

"Of course, honey, she'll just leave and get home a little earlier than you." This didn't console her much. My answers didn't seem to fit her questions, but a lot always goes on in her head that doesn't make it out of her mouth, and it took me a while to realize that she had moved on to worrying about adulthood.

"When she moves away, will I ever see her again?"

We talked about grown-up sisters, and how special Sister Smak is to me, and about aunts and uncles and cousins, and that seemed to help. I avoided the word "brother", maybe cowardly of me? It was certainly on my mind, and likely on hers as well.

I miss him so desperately. She feels his loss too, and I'm sad that she's scared of losing more. Then again, so am I.

Sunday, March 22, 2009

Book Review: Fool

I'll start with the "aside", this is the first real book that I've read, for pleasure, in over a year. That in itself reflects my state of mind, as it's something that I've been unable to do. I'm starting back to work tomorrow, and feeling good enough to do that, even looking forward to it.

On to the review. I heard this author interviewed on the radio one day when I was driving by myself. The interview ended about 30 seconds before I drove past my local Borders, and I was in an impulse-buy mood that day, so ran on in. It's a comedy by Christopher Moore (never heard of him before), a bastardization of King Lear. He reflected that the Bard wrote for the common man, with common comedy, emotion, and vulgarity. And that's what he was going for here.

So he changed the story, added several hundred curse words and jokes about shagging, and turned a most tragic story into a comedy. And it's funny. It's sort of Shakespeare meets Princess Bride, but written for adults.

I have never read or seen King Lear (gasp), but you don't really need to in order to enjoy the book. If you're after a light read, something to make you laugh, and you're not easily offended, you just might like it.

Monday, March 16, 2009

Stepford mom

Henry's long illness and our foreknowledge of his death allowed a lot of anticipatory grieving. It wasn't easy, but I think that it's really softened the blow on this end. I'm not angry, I'm not shocked, and I hope I'm not in denial. I really really really miss him, and I hope I always will. Sometimes it's in a fond bittersweet way, sometimes much more raw pain. It's what I anticipated, I guess.

Some things I didn't anticipate. This weekend we took the girls to a local resort, hoping for a time to heal and to try our family's sea legs with our new structure, new rhythm. What I realized as I watched the gobs of other families there is that I'm grieving for my family of five. It's what I always wanted and what I had. The day we brought my middling home from the hospital my husband and I looked at each other and said, "She's wonderful, but two isn't enough." This weekend, I couldn't get away from that thought. I looked at my beautiful healthy thriving girls and thought "Two isn't enough."

I feel myself reaching for it, grasping it, trying to get it, in a way that I don't with Henry. This is part of why I think I've really accepted his death, and where I want to be emotionally. I want to love him, remember him, miss him, without my brain trying to get him back in futility. But I haven't let my concept of "my family" go yet. It feels like one of those big metal puzzles where the ring is stuck in the middle and you can't get it off, but you know that if you try long enough, or just figure out the secret, you'll be able to.
if I have another child we'll have five again and it won't be Henry but it will help balance again but then there will be so much space between the kids that they won't play with each other so maybe I should have two more but then when the Eldest goes off to college the baby will only be 5 and they'll never bond and maybe I should consider adoption but I never really thought of myself as the adoption type and adoption takes so long anyway I should just get pregnant again now but then...
Somewhere my brain believes that there is a solution to this, that there is a way to get my family back. I hate feeling this way. I feel like it cheapens Henry and my love for him, like his place in my perfect little family was more important than him as a human being, as my son.

I need to look at this "family", hold it, examine it from all angles, and then put it down. It's not mine anymore, and there's no way it can be.

Friday, March 13, 2009


Who's to say
What's impossible
Well they forgot
This world keeps spinning
And with each new day
I can feel a change in everything
And as the surface breaks reflections fade
But in some ways they remain the same
And as my mind begins to spread its wings
There's no stopping curiosity
Please don't go away
Please don't go away
Is this how it's supposed to be?
Is this how its supposed to be?
-Jack Johnson, Upside Down

I remember the first shower I took at home the week after Henry's surgery in October 2007. This song played in my head, and I wept and wept knowing that I would play it at his funeral. For months I had trouble listening to it.

It's different now, so many things are. I love this song, and smile inside when it plays. Sometimes it still makes me tear up, but happy tears. This world keeps spinning. Indeed it does.

Intellectually I know that my reactions to Henry's death are normal, but the guilt that I have is intrusive. Which is curious for me, normally not being a guilt-ridden person. When I'm sad and down, I worry that I'm depressing the girls. Why has my middling asked to go play at a friend's house four days this week after school? Am I so melancholy? Is our house full of pain for her? Or is she just seven years old, and likes her friends? And then, on days I'm doing well, I wonder how I can go shoe shopping when he's been gone just 2 weeks. Just two weeks! It seems forever already. Do the girls look at me and think, "Geez, mom got over him pretty quick. Hope nothing ever happens to me!"

This is a hard time, but not in the way I thought it would be. I'm not overwhelmed with sadness, all the time. There are certainly moments. Mostly I just feel lost. I don't know how to feel, and it changes rather abruptly, and I'm not used to it. This world keeps spinning, as does my head.

I'm spent the last 4 months wishing for time to eek by, and wanting to see and smell and touch every minute. Now I wish I could fastforward life two years, to when I'll be feeling better.

Then, the guilt again. Two years I wish away, two years of my own life, two years of the girls. What if that's all I have? I already can see what I've missed of my middling...she grew up so much in the last 18 months, and I didn't see it happen. Do I want to miss more?

Is this how it's supposed to be?

Monday, March 9, 2009

A Gathering Storm

Like Henry's illness, his death has been easier in some ways than I expected, and harder in others.

When Henry relapsed, I was surprised to find an overwhelming sense of relief. My anxiety level regarding if, when, how he would relapse had been so great, so constant, so unrelenting, that to not have to worry about the relapse anymore was liberating. I could just focus on him, on what was next to come, without wondering.

With his death, I found the same. It was less palpable than with the relapse, but there was still a sense of relief. I no longer had to worry if he would be uncomfortable. If it would traumatize the girls. If he would be scared. If it would take so long we would wish for the bitter end. If he would have to be hospitalized again. If I would regret his lack of IV access. If I would make a bad decision, or one that I would regret.

I also found that as a parent I had a huge sense of relief. I no longer was the parent of a child with cancer. I no longer had to walk the minefield of that life, scanning the horizon for infections, cancer, learning disabilities, emotional scarring. Next time a kid in my house pukes, that's all it will be: puke. Not cancer.

I felt this relief in the girls too, and we talked about it a lot. I made it clear that though it was nice to not have a sick brother anymore, it didn't mean that we didn't miss him, and it didn't mean that we wouldn't have all done it forever if we could. But no one misses cancer.

But just as the relief from physical pain fades as the memory of the pain fades, relief from cancer has all but disappeared.

I find that I have trouble identifying what I'm going through now, like there is so much going on in my mind that I can't pick out any individual agenda items. I've never walked this road of grief before, and it seems that it is so different for everyone that I don't know how to anticipate what is to come.

I feel a gathering storm, though, and sometimes I wonder if I'm prepared enough for it.