Friday, August 22, 2008

I kind of thought it would skip me this year. I don't know why. It hasn't even been two years since he died, but I guess I kind of figured having gotten through that year of firsts without him, that the seconds would not be so painful. But they are and its taken me a little bit by surprise. I am better at being present in the grief, but I still am uncomfortable with it happening around anyone and I find myself absolutely dreading and wanting to avoid my therapy sessions. Its just too intense and deep and responsibilities too great to afford the kind of loss of energy it brings. Its physical, heavy limbed, hollow chested emptiness that just sucks you dry.

The boys start school on Monday. Nick is going into eigth grade and Alex will be in fifth. Joseph would have been starting 10th grade this year. That's the grade I started when my family moved here from Omaha. Something about that just gets to me. I feel so upset and angry inside. I will never see him reach 18 or 20 or 25 and it is a suffocating grief inside me when I imagine counting off those years the same way I have counted off these.

I am doing the 5K in his memory and it is going very well. The charity, Heroes For Children, invited me to come visit them yesterday, so I went down there and met one of the co-founders (Jennifer) and the young woman who organizes special events (Danielle). The co-founder lost her little girl to AML at the age of 9 months. How on earth does a baby get something so awful? It was wonderful to be back in that sphere, around people who "get it" and this woman in particular, as she had the same doctors and nurses. We compared notes and it was actually a little bit healing to hear that the nurses I had trouble with were the exact same ones she did, for the exact same reasons. I think somewhere in the back of my mind I wondered if we were unreasonable or hard to care for. I honestly don't think so. But people do tend to be surprised that I didn't bond that much with the nurses, at least not in the pediatric ward or on the transplant floor. I got very attached to our ICU nurses though. It was just such a stressful, hard time and I felt like I had so many balls in the air. I didn't have room to be gregarious too. But somehow I still wonder if they saw me as difficult or cold or uncaring. Difficult maybe, but not cold, not uncaring. Just focused and more than a little bit overwhelmed. I guess when I am a nurse I may have better perspective from their side of the bed and know more globally what our experience meant.

She is still in regular touch with the physicians that treated our children and it surprised me how hungry I was to hear word of them, how they are, wondering if they remember us, if they remember Joseph...wondering what they would say now about his journey now that it is all over. Maybe they will come to the 5K and I can at least say hello to them. I wrote them all letters after Joseph died just telling them I believed they did all they could for Joseph and that I was so grateful. Turns out Jennifer did the same thing, which made me smile. At the time it felt so vulnerable to do such a thing, but I guess they get a lot of such letters.

I am just missing him so much. Sometimes it seems like the vastness of his loss is just now becoming apparent to me, the whole entity of him missing and all the implications of it. I still have his voice clear in my head, but I went to hug him in my mind this morning and felt like I could not breathe when the soft feeling of his adolescent cheek did not come to me easily the way it used to. My belly flutters in panic. I cannot begin to forget him. The very idea terrifies me.

We have raised over $1500 so far for the 5K and that pays back all the benefit we got from the charity and then some. It is enough to help two families in the next year. Every time I see that number grow I feel something heal, something become more solid to stand on, as if it gives a concreteness to Joseph having been here. I found his little wrist ID badge from when he was born the other day and I just stared and stared at it. He was real. He was here.

Joe got me tickets to see Michael Buble in October as a birthday gift, over in Fort Worth. I am so excited by that. I keep listening to his song Lost, which makes me tear up in a good way. The words are so perfect. This will sound goofy, but it is almost as if I sing/say it to myself, or it is from Joe, or Heather...people who know my heart so well, who I believe are protective of me...its childish and raw but it makes me feel better, to huddle under that feeling of being loved and protected. There is one line that says "I hardly recognize the girl you are today" and that is always, always the moment when my throat closes up. Its so true, I never expected to be here. And I can feel intensely ashamed sometimes of how badly I want and need to be cradled and held and soothed and protected. The hiding of that can just lock my throat up until I cannot breathe.



I can't believe its over
I watched the whole thing fall
And I never saw the writing that was on the wall
If I only knew the days were slipping past
That the good things never last
That you were crying

Summer turned to winter and the snow had turned to rain
And the rain turned into tears up on your face
I hardly recognize the girl you are today
And God I hope its not too late

You are not alone
I'm always there with you
And we'll get lost together
Till the light comes pouring through
So when you feel like you're done
And the darkness has won
Babe, you're not lost
When your world's crashing down
And you can't bear the thought
I say, Babe, you're not lost

Life can show no mercy
It can tear your soul apart
It can make you feel like you've gone crazy
but you're not
Things have seemed to change
But one thing is still the same
In my heart you have remained
and we can fly, fly, fly away

Cuz you are not alone
And I am there with you
And we'll get lost together
until the light comes pouring through
When you feel like you're done
And the darkness has won
Babe you're not lost
When the world's crashing down
And you cannot bear the cross
I say Baby you're not lost.


I like that is forward looking. It acknowledges the pain of life, but says it will go on, it will be okay. I need to know that with everything I am. And I do. But seeing and hearing it in a way that gets through to my artistic mind, which I think is closer to my soul than my logical one, is powerful for me.

So here I am. Missing him so much it feels like an elephant sitting on me. But doing so many good things and feeling very good about that. I never thought I would get to this place, where I can own my grief and yet still live. But I am here.

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