FIREFOX Users! I have no idea why the colors get weird and I am saddly too stupid to change it. Don't strain yourself... Just ask someone who CAN read it to translate it for you!

Wednesday, April 27, 2005

Did you know...

that poison control in California gets at least one call a day regarding those little packets of silica gel found in shoe boxes and hand bags and stuff? Did you know that the glue on those packets will turn little lips an alarming shade of white? And did you know that at the tender age of 4 the printed words DO NOT EAT might as well say TASTY SNACK?

Neither did I 'til just this afternoon.

Instant Message Confusification

Penny says:

Penny says:

Penny says:

J says:
huuy to you too!

Penny says:

J says:

J says:

J says:
hyunka! kng... kng...

Do you suppose he'll ever figure out that he was talking to Number Three daughter and not me?

Sunday, April 24, 2005

The Worst Day of My Life

If you have not read the previous post titled Number 1 (a), that is where I described the diagnosis. This is how I got the diagnosis.

Something about the baby was not right. She was not making eye contact and she was not... right. She was wrong.

I was honestly afraid that someone had hurt her. Shaken her. Dropped her. I suffocated on my something-is-wrong-with-the-baby-ness. But I am not her mother. So I had to employ collateral parenting tactics.

I started with suggesting that the baby needs to see the doctor. Which met with the monosylabic response "Soon." I then advanced to the baby needs to see a doctor NOW. Which was met with "Appointment is on Weds." So I queried at what time? Because I am attending this appointment. Which was met with:

"You are the only one worried about this. Everyone else thinks she's fine. CC thinks she's fine and CC is a NURSE!"

(Dashed in the face with freezing cold water. CC is Number 1 (a)s other grandmother. Not only does my own child not take my advice but she listens to this asinine, vapid, idiotic, clueless excuse for -- that was a tough one)

Then I discover that there is no appointment. There's a maybe we are gonna walk-in tomorrow, maybe not. That is when I shifted gears from collateral to full-frontal parenting. I said "We will go to the hospital tomorrow. I want you and the baby in the car by 9 am." and so we went.

We got bumped to the head of the line. Others waiting looked at us with venom. "Why do they get to go first?" Don't they know that going first in the emergency department is BAD news not good?

The doctors paraded through, each towing along a new one. They whispered. They consulted. They decided she needs a CT scan. and an MRI. and an EEG. She needs to be admitted. She needs an IV. She needs blood work.

She needs.

There is very uncertain talk about the CT scan showing some abnormality. No one tells me what this means. I ask "It is consistent with injury?" they say could be. She needs an MRI.

For an MRI to work properly the patient must lie very still. It is impossible for a two month old baby to lie very still with out sedation. In order to sedate the baby she must be NPO for 8 hours. Are you familiar with this medical code? NPO? Nothing by Mouth. No food.

Can you imagine not feeding a two month old baby for 8 hours? Turns out it was far worse than even that.

Number One Daughter went home at midnight. She nursed the baby and then went home to sleep. I started to resent her for that. Here is her child, her precious fragile innocent dependent, about to experience the worst time of her small life. and her mother left her.

So I stayed.

From Midnight to 2 am she was a normal baby. She slept and she snuggled and stayed warm and happy. At 2 she mentioned that she was hungry. Between 2 and 3 or so she was distracted with the pacifier and Granny who sang in her ear. Around 3 she began to demand. Her cries were angry DO NOT IGNORE ME cries. Her body was stiff, she pulled my hair.

Around 4 she was despondent. Her cries had turned from demanding to wails of pain and fear. She would not take the pacifier. She would not be distracted. So began a cycle of crying until there was no sound left in her, just hiccups and hitches and whimpers. She would sleep fitfully until she had regained enough strength to cry again.

We walked, towing the IV stand and disconnected from all the blinking monitors. Angry nurses would admonish me "She has to remain connected to the pulse-ox machine!" and I would say "yes, of course, so sorry." and then unplug her when they'd left.

We rocked, I sang, I whispered promises and apologies and prayers.

"A pony. Granny will buy you a pony and we will make your mother clean up after it!"

Hush, hush, little baby, I'm so sorry.

We went on like that until 11:00 am when they finally sedated her for the EEG. Eleven hours with out food or water. Nine hours of pure torture with no way for her to understand why it was necessary, why it did not mean that I did not love her. No way to possibly understand anything but abandonment and hunger and fear.

There are no words to express the depth of my pain. Of my helplessness, impotence; of my own fear.

When they finally sedated her I felt like I had been in battle. My body filled with unused adrenaline. Wrought with sleeplessness and pacing while holding her. My back bent. My feet throbbing. My heart broken.

My heart broken.

It was shortly after the EEG that the neurologist showed me her CT scan. Pointed out the defects. Patiently explained what it meant. Explained that she could go home as soon as she was awake enough because there was no longer any rush. We are no longer at the head of the line. She can have an MRI weeks from now, it makes no difference if we wait. Because nothing is changing. There is nothing to repair. Nothing to fix. Nothing to be done.

I went home that afternoon, while she was unconscious. I stood my battered body in the shower and cried. Cried until my eyes were swollen and the water ran cold. Taking not one speck of pleasure in the knowledge that I had been right, something was wrong with the baby. And not a bit of smugness knowing that I was the one who stayed with her while CC slept in her bed. Because even though it was the worst thing that has ever happened to me, even though I have never felt such pain before, I would not trade one second of it for careless, selfish sleep.

Some things are worse than pain.

Saturday, April 16, 2005

Number 1 (a)

I have dreamed about her. Mostly she was skipping and singing. Dark hair and blue blue eyes. She was gonna call me Granny (even though its the most archaic grandma name I know I was gonna love it).

In my closet is a book called What's in Grannys Purse? We we're going to sit and read it together. Read it so many times that we could say the words with out looking. And when she graduated from high school I was going to say "Do you remember when I taught you to read? The book we read?" and she would say some of those words and remember. Remember how much I love her.

We were going to hold hands.

She was going to call me when she hated her mother and I was going to remind her how much her mother loves her.

We were going to share secrets.

I was going to clap and cheer when she walked. Tell my friends how amazing she is. Secretly compare her to everyone else's little girl ...

I still dream about her. In my dreams she rolls. and walks. and sees.

But we are never going to know that little girl. She died when the doctor showed me the CT scan. Explained what the vacant places in her brain mean. Schizencephaly is schiz -- like broken, fractured, divided -- and encephly -- brain. She has a fractured brain. Polymicrogyria. Poly is many, micro is small -- too small, and crumpled and wadded and wrong -- gyria. What is gyria? Twisted. Dizzy. Sick.

I do not need to be a doctor to see that her brain is broken. To understand what these awful words mean. INSULTED. The teeny little bit of her that was to become her brain was insulted. Destroyed. Given bad instructions. and then it grew a bad brain.

I was holding her yesterday when I felt her first clonic seizure. Evidence of her defect leaking out of her brain and into her body. A body which will likely never walk, let alone skip. Housing eyes that will never see me, let alone read our book together.

But if you kiss her, really smootch her, she will grace you with a smile which says "I am in here, some bit of me is left in here." and I can't decide if that is the greatest tragedy of all.

I wonder if she will dream, too. I hope we hold hands in her dreams. Like we do in mine.