This blog is my record of my journey with my son who had a rare, and eventually fatal metabolic illness. It is the story of the last year and a half of his life, his death, and after. I have shared this journey this in the hopes that is will not only help me come to terms with the realities, but also that someone along the way may find it helpful, as they face a similar journey.

This is my place to comment on events, blow off steam, encourage myself (and maybe you), share frustrations, show my love, grieve my losses, express my hopes, and if I am lucky, maybe figure out some of this crazy place we call life on earth.

The content might sometimes get a little heavy. As an understatement..


People who are grieving may write sad or difficult things and bring you down. This blog may not be for the faint of stomach or of heart. Read with caution and at your own risk.

If you are new to this blog, I suggest reading it from oldest to newest. It isn't necessary, as what I write is complete in itself. But this blog is sort of the result of the "journey" I'm going on, and I think it sort of "flows" better from oldest to newest.

I do hope that in the end you will find, in spite of all the difficult and heartbreaking things, things that are worth contemplating.

Welcome along!

Wednesday, September 1, 2010

Circular Staircase

I was going to continue on with the truth in fiction, but I'm having trouble deciding what to share next... I'm not ready to tackle my favorite book yet, I'm saving that up. There is so much personal stuff in what I'd be sharing...

Plus, I was toying for awhile with starting another blog. Lots of bloggers out there do this, and it would have been a way to separate things for those who are more interest in the details of life with Joel, and those who actually enjoy reading my more general "musings" about things like the truths I've found in fiction, for example. I toyed with the idea of sorting them, or classifying them somehow... but I just couldn't.

They are just all too connected. I can't separate any of it out from the rest. It might seem like writing about a favorite book, or sharing a memory, or talking about how I know God exists, it might seem on the surface to be different from when I talk about Joel, about loss, about living suspended between life and death and all that stuff. But it just isn't. This blog is about life in general, and my life in specific. And all those things are all part of it. Everything I think about when I "muse" touches how I act or react in the areas directly connected to Joel. And absolutely everything I think about has been touched by my experiences with him. So, for better or for worse, you will find it all here "jumbled" together. My favorite books, thoughts about "issues," doctor's appointments, memories, practical advice, and philosophical musings all mushed together. It's a blog "potluck!"

Today's potluck dish is something true about grief, in the form of a poem. But don't worry: it is NOT my poem! :) There is a quote from the book A Grief Observed, by C.S. Lewis, that I'd like to share. It links in an almost uncanny way to this poem I love, for both are speaking of grief, and the way it seems to keep falling in on itself. The way it seems like a terrain you can't seem to get out of, though you come upon pockets of forest, or meadow, or hills, somehow there is the marshland opening up before you again. I'm afraid I'm not explaining it very well, which is why I shall share the quote and the poem with you.

Lewis says "For in grief nothing 'stays put.' One keeps on emerging from a phase, but it always recurs. Round and round. Everything repeats. Am I going in circles, or dare I hope I am on a spiral?"

The poem is by Linda Pastan. "The Five Stages of Grief."

The night I lost you
someone pointed me towards
the Five Stages of Grief
Go that way, they said,
it's easy, like learning to climb
stairs after the amputation.
And so I climbed.
Denial was first.
I sat down at breakfast
carefully setting the table
for two. I passed you the toast ---
you sat there. I passed
you the paper---you hid
behind it.
Anger seemed more familiar.
I burned the toast, snatched
the paper and read the headlines myself.
But they mentioned your departure,
and so I moved on to
Bargaining. What could I exchange
for you? The silence
after storms? My typing fingers?
Before I could decide, Depression
came puffing up, a poor relation
its suitcase tied together
with string. In the suitcase
were bandages for the eyes
and bottles for sleep. I slid
all the way down the stairs
feeling nothing.
And all the time Hope
flashed on and off
in defective neon.
Hope was a signpost pointing
straight in the air.
Hope was my uncle's middle name,
he died of it.
After a year I am still climbing, though my feet slip
on your stone face.
The treeline
has long since disappeared;
green is a color
I have forgotten.
But now I see what I am climbing
towards: Acceptance
written in capital letters,
a special headline:
its name is in lights.
I struggle on,
waving and shouting.
Below, my whole life spreads its surf,
all the landscapes I've ever known
or dreamed of. Below
a fish jumps: the pulse
in your neck.
Acceptance. I finally
reach it.
But something is wrong.
Grief is a circular staircase.
I have lost you.

I love that poem. I confess that I don't understand every word of it, but some of it seems like a mirror image of my heart. Yeah. Grief, it's easy, like climbing a staircase after an amputation. I'm glad to share the poem with you because it is beautiful and even if you don't understand every line, I think the feelings of it all come through.

But what I really wanted to share, with the poem and with the quote, is the circular, spiraling nature of the grief experience that seems common to us all. The "I felt all this before and now I have to feel it all again!" sort of experience. The "Why can't I ever seem to really leave this pain behind me??" sort of feelings. The hashing and rehashing, the working and reworking. Sorrowing and re-sorrowing. If you have experienced it, this is likely plucking a chord, a vibration deep in your heart that is humming in empathy. If not, then the poem and Lewis's words are the only explanation I can give you for why those who are grieve must go over things again and again.

For every time you manage to grasp the reality of what you have lost, you are struck anew with the reality of what you have lost. Oh the irony that every time you can accept for a moment the truth of what has happened, you are starting the grief process all over again!

And so, recently I have been mourning (again) the way I couldn't nurse Joel. The way that his really "wee" months were a hazy blur that had a nightmarish quality. That there were almost no happy moments of milestones. That almost the instant he stopped crying, I realized he could not see. I have nothing happy to take out of those first 4 months. I want my baby back.

Grief is a circular staircase.
I have lost you.

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