Sunday, December 13, 2009

The Invisible City of the Kidnapped

I have been shanghaied. Taken and stored in a terrible stinking rotten crate aboard a vessel I have not had the courage to name. I have waited for this since Willa’s diagnosis. We knew it was out there, on the high sea, waiting to come in on some moonless night to snatch us away and hold hostage everything we have built up as a wall of defense. We are defenseless. Willa has cancer.

Right after my last post Willa had her routine ultrasound. The Radiologist came into the room and said, “the baby has a large mass in her pelvis.” Again, the darkened quiet room. Why do we always get the worst news in such places? There was a television on in the background playing a cartoon that Willa has no interest in. She smiled at the doctor. She waved. She laughed.

I knew what it was, the nails were hammered into the crate, we were loaded onto the ship.

Next followed the storms of diagnostic testing, the bone scans, the biopsy, the CT, the bone marrow pull… We were tossed about becoming bruised fruit at the feet of those with power. We had word quickly. Rhabdomyosarcoma, Stage III, to date inoperable.

We were transferred to another vessel. Willa will have a year of chemotherapy. Every week we now go to CHOP and she has poison poured into a port by her collarbone. She smiles. She waves. She laughs. My crate has been thrown overboard. I am barely floating, more submerged in a reeking ocean of foreign garbage and dead fish.

But still, I purse my lips and lift them above the water line inside my new home. I keep breathing. I have learned so many lessons of survival from Willa and that knowledge is being tested most acutely now. I have to hope that someone will find me out here. The waves will push me into shore. That some strange ocean animal will befriend me and share what they know of this place. I will gain new sea legs. I may grow gills to breathe.

In the hospital my heart breaks for the other parents. They never saw this coming. They had perfectly healthy typical children and then were given such news, their child has cancer. They wander about the halls with crazy eyes. They cry when pouring their coffee. They mutter under their breath and the smell of fear is everywhere on them. I smile at them as much as I can. I speak when they can hear me. I look them in the eye and try to offer calm because I know that fear. I am just more prepared for this. For us it was a fixed mark on our permanent horizon. We hoped to avoid it but now we are here.

Willa has lost her eyelashes. Her hair is following and then her eyebrows will depart too. She looks different. Her coloring is profoundly altered, her stomach swelled with tumor. Her belly button pushed out, the skin taught and shiny and horribly horribly wrong. But the weeks have passed. The medicine is running like wildfire through her veins and the mass that spelled such tragedy is shrinking.

Our goal is to remove it as soon as it is small enough. She is too young, too delicate for radiation. The protocol is chemo and extraction and more chemo. This ship will be at sea a good long time. This is my message in a bottle. I had feared saying these things out loud. I feared the permanence of writing them down, of thinking them, of sharing because when others read, hear, see, it is real. Totally, unchangeably real.

Willa has cancer.

Will we ever know the feeling of solid ground? Will she ever have a release from all this hurt? Will we continue to have the strength? Can my fingers web? Can my skin grow scales? Can my back allow a fin to break through by which to steer myself in the right direction? Or will we die, locked in these crates, the worms making a deep-sea meal of our hopes?

We are truly invisible now. No one can see us. But hearts beat in these boxes. Their rhythms will make the waves. We will make our own weather.


Anonymous said...

I can feel your heart beats...

Willa, the light of God surrounds you.
Willa, the love of God enfolds you.
Willa, the power of God protects you.
Willa, the presence of God watches over you.
Willa, wherever you are God is.
Willa, all is well.

Sending prayers, strength and healing energy your way...

TUC said...

I cannot see you now... but I can still hear your words and your soul crying. As I sit here on the shore, unable to reach you, know that I am thinking of you, hoping for you, willing you strength, praying for you and your darling girl.

gillian said...

I'm so sorry. and will be praying for Willa.

Leah said...

I, too, will be praying for you and Willa. My heart is breaking for you.

DownTownDan said...

Wow. Every now and then I stumble upon a blog post that deserves a spot among my personal all-time favorites. Very rarely, I read something that takes the top spot. But after reading this post, I think I'll just tear up my old list and start fresh. You get first place, last place, and every place in-between.

I feel like I could use a life raft, too. I feel sea spray on my cheeks.

I cannot imagine your pain. I'll be thinking of you forever.

invisiblecities said...

Thank you everyone for your incredibly kind words, we need them now and it gives great comfort to hear them. It actually surprises me how much I need to hear them but I really shouldn't be. There is still so much I haven't learned but man am I getting a lesson... Holiday love to you all and wishes for health, merriment and much happiness. xx

Anonymous said...

I came to your blog by Anahita; from the other side of the sea your words and your sadness found my heart and i keep them preciously with me. I keep them in the wind,in the cold, in the good days too...Thougts to you..

Anonymous said...

Prayers for Willa and you and your family. I have no words of wisdom. I found your blog some time ago and just checked it after about an absence of 3 months.
So much sorrow and suffering, too much...
I am awestruck by your strength, wisdom and love for your daughter.
You are not invisible. We hear you and are praying with you.
Is there anything we "out here" can do for you?

Jo Ashline said...

Prayers. Love. Peace. Your family is in my heart this morning, as I ponder my own life and count the blessings feverishly. Reading your post, I am reminded of what really matters. Hang in there Mama. God Bless you all.

Miryam (mama o' the matrices) said...

Found your blog through an old friend, and oh. I am so sorry.

We spent years sharing rooms with kids with cancer, sitting on the edges of their world. It doesn't happen to kids - but it does. But because oh, it doesn't (does), you live in a reality that other folks shy away from, and it's painfully lonely.

I'm sorry. And I'm glad that you have this blog, and readers to take the edge off that loneliness.

Anonymous said...

Can't go under, can't go over, can't go around, gotta go through.

You are in my thoughts.

jen @ only who i am