Friday, November 28, 2008

The Well

This grief, there's so much of it.

On a daily basis, it's not overwhelming. I can carry it in pieces. I can tackle the day's weight.

But there's so much of it. It's a deep dark well. I drink some every day, but there's so much. And I have a terrible feeling that I don't even know how deep the well is, how very much there is.

Some days, it helps to drink, like a bitter tasting medicine. I know that I need to get through it. I can't continue to avoid it.

But there's so much. I can't ever finish. Surely there is enough grief there that it will still be there, in that deep dark well, until the day I die.

Saturday, November 22, 2008

The Surreal Life

Henry is feeling great. He wasn't at all last month, but he's taking some palliative chemotherapy at home that is really doing wonders. I haven't heard him laugh so much in months, maybe ever. It's amazing, and fabulous, and remarkable, and all of those other words rolled into one.

It makes dealing emotionally with his impending demise hard, almost impossible. It feels like we can keep coasting and doing this forever. Cognitively I know we can't, but to look at him feeling better and better every day, incurable cancer is not something that my mind is embracing right now.

Not that I'm complaining. It's been a deep breath, a break from the constant sorrow. I'm not a very good denial type of person, I know reality will once again take hold. But for now I've decided I'm going to roll with it, pick up the denial and run with it as long as I can.

Sunday, November 9, 2008

Make A Wish

Before Henry relapsed we had planned his Make A Wish trip for a week in Orlando. Allow me to briefly plug what fabulous organizations both Make A Wish, and Give Kids the World (a resort in Orlando dedicated to children granted wish trips on the basis of life threatening health conditions) are.

I have seen other families dealing with pediatric cancer take their wish trips after a child has relapsed, when eventual loss is inevitable. I always felt certain that were I in their shoes the entire experience would be one of recurrent agony, with every moment poisonously laced with the knowledge that it would indeed never occur again.

Isn't that the case already?

We had a fabulous trip. There were tears, and sadness, but more than that was joy and happiness. To be honest, the trip was a bit much for Henry, who wasn't feeling up to everything that we dragged him through. But for the girls it was magical, and even Henry had a number of magical moments.

He continues to feel well. He's very relaxed, happy to be home and with the people he loves, and not currently uncomfortable in any way. Of course, the oncologist can't tell us how long we have with him. We've elected to use some oral chemo to extend the time that he has, which sounds to be somewhere between a couple months to a year, with the shorter end of that more likely.

This continues to be a magical time for me. Time seems to have slowed down somewhat, and I am treasuring the experiences that we all have together. There is a current of sadness, but the bulk of the emotion is headed toward happy shores. I have the distinct feeling that though I expected it to feel differently, this is exactly how it is supposed to feel.

Saturday, November 8, 2008

The One Who Knows

Last fall my mother and sister and I planned a girls night out, dinner and a concert in a small venue in Alexandria. Then Henry was diagnosed.

I made myself go. It was my first social outing after his diagnosis, and incredibly difficult, but helped me to see and understand that life would go on.

We saw a performer named Dar Williams, who performs thoughtful and folksy acoustic music. Sister Smak has followed her for a long time. I was very emotional through the whole thing, but especially through a song she wrote called The One Who Knows. She introduced it by saying that she actually wrote it before she had her child, about the love that a parent has for a child. It was difficult to listen to, but remains the most beautiful song on parental love that I've ever heard.

Last night we went back to the Birchmere, and saw her again. It was a lovely performance. She didn't play The One Who Knows, which was probably a good thing. Through the grace of Lexapro I was able to enjoy the evening.

After the concert my daughter wanted to wait for Dar to sign a book. I felt the need to tell her about what the song means to me, and openly wept while I did. I'm so glad I had the chance to thank her for her music.

The One Who Knows

Time it was I had a dream
And you're the dream come true
And if I had the world to give
I'd give it all to you.
I'll take you to the mountains
I will take you to the sea
I'll show you how this life became
A miracle to me.

You'll fly away
but take my hand until that day
So when they ask how far love goes
When my job's done, you'll be the one who knows.

All the things you treasure most
Will be the hardest won
I will watch you struggle on
For the answers come
But I won't make it harder
I'll be there to cheer you up
I'll shine the light that guides you down
The road you're walking on

You'll fly away
but take my hand until that day
So when they ask how far love goes
When my job's done, you'll be the one who knows.

Before the mountains call to you
Before you leave this home
I will teach your heart to trust
As I will teach my own
But sometimes I will ask the moon
Where it shined upon you last
And shake my head and let me say
It all went by so fast

You'll fly away
but take my hand until that day
So when they ask how far love goes
When my job's done, you'll be the one who knows.