Tuesday, January 16, 2007

One Year Ago Today

One year ago today, we received the news that Froggy had Cystic Fibrosis. It was the worst day of my life. This picture was from the day she was born, the best day of my life.

Last night in a somber mood, after Froggy and FD went to bed, I stayed up til 1am writing this essay.

One Night in the Hospital

The little boy on the other side of the curtain was a new intake, and our new roommate. Soft-spoken and sweet, he was ushered in with a herd of women; aunties, grannies, mamas, and sisters. It was two o’clock in the morning and by the shrill volume of their voices, they must have believed they were at a horse track, cheering Casino Wheels into the homestretch. An interpreter loudly translated the boy’s diabetic specifications, HMO policies, schedules, diet, and meds. These were his needs.

What we needed was sleep. It had only been a week since we were given the devastating news that our four-month-old baby girl had Cystic Fibrosis. It was one of those diseases you read about in the mail. They send a picture of a cute kid, with a slightly pathetic smile and a letter from his dad begging you to give money for the cure. This was us now. We were the family in an envelope, begging for a cure.

Before we had a chance to accept this reality, we were admitted to Children’s Hospital. Our little girl was very sick. She needed a blood transfusion, enzymes to digest food, and vitamins pumped directly into her veins. We were terrified and coping, but more than anything, we needed sleep.

The little boy on the other side of the curtain watched cartoons while the women in his life fought for every detail of his care with loud, cheetah calls. On the television, a coyote chased a roadrunner, with "mmmeee meeps, and beee beeps." I put the pillow over my head and dreamed of anywhere else but here. It was the middle of the night, and yet in a hospital, this was just another hour of fixing someone’s glucose, skinned knee and cancer.

It’s hard to feel sorry for other people when you’re struggling with your own stuff. I needed rest. My baby needed rest. And I didn’t care about this kid, his loud aunties, or the obnoxious interpreter. I grabbed my tiny babe, a couple blankets and left the room, giving everyone a dirty look as I left. It was a look that meant, “Did you ever stop to consider there were people sleeping on the other side of this curtain?” If there was one time in my life where I was allowed to be selfish, this was it.

We followed the yellow-painted feet to the dark side of the hallway, where the respirators never rest. These patients were in isolation and had their own rooms, and I silently envied them. At least they were getting some sleep, even to the hum of metal lungs.

After 10 rounds of circling the fifth floor, we slipped into the elevator, and it hit ‘down’.

A hospital main floor is like a mall after closing. It holds the ghosts of the day and never really feels empty. When I was a Bluebird in Campfire, the local mall in Des Moines, Iowa, let 400 girls spend the night. It was a dreamland for an eight-year-old, like Barbie coming to life, or magically being given the ability to fly. We ate eggrolls, cherry slushies and watched the movie “The Dark Crystal” at three o’clock in the morning. The best part of a mall at 3am is that you aren’t supposed to be there. And as I walked the halls of Children’s Hospital, twenty years later, I felt that same excitement of doing something forbidden. We had broken out of our room, and this place was ours.

We passed the McDonald’s, lobby, coffee stand, and nodded to the janitors as they politely turned off their vacuums for my sleeping baby. They gave us the “sorry” look, and I appreciated their empathy.

The room I finally entered was about the size of a utility closet. It had an alter, bible and place to kneel. There was even a stained glass window and the light illuminated the dollhouse church like an Alice in Wonderland cathedral. It felt surreal and peaceful. I couldn’t help but think that I was supposed to be here. For some reason, the intake, lack of sleep, this place was what I needed.

On the table I found a book and a pen attached with a metal string. I thought it was a guest book, like at a wedding or funeral, or perhaps a list of everyone who had faith. You just sign in as a good Christian and you’re free to go, even if you skip the reception.

But this was a book of prayers, written by people, who like me found themselves alone in a utility closet church, wondering how in the world we ended up here.

The first passage went something like this:

Dear God,

I know I haven’t been a good Catholic, but my baby is sick. She has cancer. We don’t know if she will make it. Dear God, please do not punish her. She has done nothing wrong. If you are mad at me for not believing, please take me.

This was another one:

Dear God,
Please do not let my sister die. If you have to kill someone, take me. I’m older.

And another:

Dear God,
I don’t understand.

And another:

Dear God,
I have always believed in you. You are a good God and I know you will do what is best. But please don’t let my daughter die...

And this one broke my heart the most:

Dear God,
Our baby has suffered so much in this life. I know you will take better care of her in the next one...

I sobbed. And then I sobbed some more. My baby awoke and I had to control it, like putting a lid on a fire hydrant. I hadn’t cried since we were admitted and now it was all coming out in a giant gush of emotion. I was afraid the janitors could hear my sobs over their vacuums.

I didn’t write anything in the book. But I did pray. I said over and over, “please God, please God, please God” and I didn’t even know what I was praying for. For my baby, for the little boy on the other side of the curtain, for all the babies in the hospital who were dying, suffering, and for all those mommies whose worlds came crumbling down with one look in their child’s face. The sorrow I felt for myself lifted. This was not just about us.

In other people’s prayers I found heartbreaking peace. I was not just praying for my own baby, but for everyone’s baby. I ached for them too. And somehow that was comforting.

We took the elevator upstairs to the fifth floor, where our roommate was sleeping. His television was on –the coyote still chasing the roadrunner. His aunties, mamas, grandmas and sisters had gone and he suddenly looked tiny in this hospital bed without an entourage. He was just a boy, small, alone, and sick.

I felt responsible for him. He wasn’t a disruption, he was somebody’s baby.

The next day I introduced myself, and told our new neighbor if there was anything he needed, we were happy to help.


Anonymous said...

beautifully written. (as always). jcn

Anonymous said...

Bless you, Elise, those memories bring tears to my eyes. . . thank YOU especially for sharing.

monika said...

oh Elise, my tears are still running as I write this; you are an amazing writer.

I ache for you, for what you went through, and for what other mothers and fathers are going through every day.

Somewhere I read that when you have a child, it is as if your heart migrates outside of its protective cage of ribs, and beats on the outside of your chest, raw and vulnerable.

I am so happy that Froggy is doing so well.

Jeff said...

Aww, Elise...

That was so heartfelt and touching :`-)
I'm happy you were able to regain perspective on the situation and I know that whatever God you believe in will make the choice that is best. I hope "froggy" is always on the good side of things and never stumbles. However, in the event that happens, I'll be thinking the biggest get better thoughts for you two! I'm sure Mieke will post something, but I'll check back here from time to time!

Casey said...

I linked here from Mieke's blog and I wanted to say your story, your emotions...they have touched me greatly. I have tears in my eyes as I think of all you have been through to this point and I am reminded again how very precious each and every second with our children really is.

Thank you for sharing. And thanks to Mieke for sharing and linking me here. I will be back to follow your journey and to cheer you on.

Robin said...

That is beautiful. (I'm here via Mieke's blog too.)

Anonymous said...

You communicate so well the depth of emotion the rest of us can only imagine ---- unless we've also walked through that fear. Thanks for showing us in words what your heart went through. Froggy is so lucky to have a mom with such a tender heart. Aunt B.

Froggymama said...

Thank you everyone. It's so therapeutic to share our experiences, and I appreciate your support and love!

Kristal said...

That was a beautiful post. Thank you for sharing. I've posted about your story/fundraiser on my blog. I hope it helps.