Rough Landing

Landing In Afghanistan                                              

Someone once compared having a disabled child to landing in a different country than originally planned. The essay was about planning a vacation to Italy and landing in Holland. Your dreams and guidebooks were for Italy and all its treasures, and Holland, though beautiful, was not what you wanted. You had waited your whole life to see this ancient country with its art and monuments and passionate gesticulating people and your plans were inexplicably ruined. The plane landed in Holland.

You were planning your life with a normal child and your child was not what you expected and life would be different. Your heart would rip open beyond what you thought was possible. A country that you had no interest in going to but if you opened your eyes and accepted this new world its beauty would be revealed. I liked the analogy. It had been faxed to me by our hospital social worker when Lueza was an infant and it was clear that she had sustained a brain injury that wasn’t magically disappearing as I had hoped. The plasticity of the brain wasn’t working out. A catastrophic accident had occurred. There had been a cosmic mistake. God had chosen the wrong person for this test. I was too weak to cope. Because I was so weak and hysterical Lulu would have to be okay. This story kept me walking and talking when I longed to drop to the floor and writhe and rend my garments.

Holland was a gentle place in my mind. I had cycled through the Dutch countryside on a student trip in high school. I knew that they had a high percentage of home births. It was filled with Rembrandt and the sacred memory of Anne Frank. They could all speak English.

I wanted to write my version of this unexpected landing. We hadn’t arrived in Western Europe. There were no tulips. No English was spoken. It was on the other side of the planet from where we were hoping to go. Terrorists had stolen our plane. We had crash-landed in Afghanistan. Our baby had barely survived the landing. Her brain was exploding with seizures. Babies were dying. We donned paper robes and held our wire-covered baby who slept for 6 days flooded with Phenobarbital. She was nourished with my breast milk through a feeding tube in her nose. Her seizures became almost invisible. A little gray ashy color would spread around her mouth and let them know the brain was seizing. I thought Lueza was dying. Screaming brought nurses who explained that it was not death. Her brain was just convulsing and because she was so sedated with barbiturates all that showed was a lowering of oxygen in her face.

Holland couldn’t be this terrifying. Everything was too extreme here. Birth and near death. Baby rushed into territory of hospital with other doomed babies. Giant radioactive machines being wheeled around close to babies. Babies who were see-through and not quite finished. Eyes taped shut. Sporting hand-knit volunteer donated wool caps to maintain their body heat. Language being spoken that was incomprehensible. No guide books for Afghanistan. War was unending. You could die of exposure in the frozen mountains. A terrorist could blow you up. Only way in was through a warplane or a crash landing. But the people were famous for their hospitality. They would share their last cup of tea. The beauty of the land was extreme. People lived there and raised families. The love was fierce. Someday I thought, I would write my version of Lueza’s early days and how it was. It was hard to breathe when I remembered this time. 

Years ago

Today Is The Day

Our first anniversary of Lu's death. I woke up to so many kind messages from my facebook world. I worried that it might be too public and annoy people but in this modern age it is hard to figure out how to mark this day.
If I were Orthodox Jewish we might be revealing the gravestone.
We still have her "ashes" on her dresser in a beautiful stone box that the man at the cremation gave to us. A discontinued line he said. Would we want it?

So it is sitting next to her photographs and birthday cards and all the sympathy letters that we received.
It is next to the tiny notebooks where all of her food and medicine intake was written down. How many times did she have her 'the Vest' treatments. A vest that was hooked up to a machine that would shake her lungs and keep them free from too much mucous. It was a brilliant design for children with Cystic Fibrosis and sometimes kids like Lu needed it.

Yesterday I checked through all her notes again. What had happened in those last 2 days?

Nobody knew. She was uncomfortable. I had seen her on Skype and I was fearful. A low fever. She was hours away from seeing her doctors. Hours away from seeing me.


The Little Mermaid is playing right now.
We will listen to all her music and watch some of her favorite movies and share a meal with a couple of very close friends who knew Lu very well.

The candles are lit.
We talk to her and ask her to visit or at least save us a good spot where she is.

This child

How can you write about this?

Lueza always wanted to know "what happened" when her friends from school died suddenly. What happened? People want to know how we knew that she wanted to hear about these stories but it was very clear. She had a very clear way of expressing 'no' and 'yes'. A turn of the head and a loud utterance of 'aye' or a very gentle turn of the head with the eyes a bit down. We could even go through the alphabet. Sound out each letter and eventually we would hit it. She would scream or after she got the 'trach' and couldn't vocalize she would still go whacko and turn her head and show extreme excitement that we had hit it. So there were long periods where we would talk about her 'friend' who had suddenly died. She wanted to know: 'why', 'how', 'when', 'where' and I would tell her the stories over and over again.
She never seemed upset to hear any of it. We didn't understand why she wanted to hear the stories endlessly. Eventually it would stop being an obsession. It drifted off or we would not think of presenting it as an option for discussion. Sometimes a new obsession would take over like being doused in the holy water that a friend's wife had brought from Russia. Holy water and then all the prayers that I knew from childhood and from roles I had played in the theatre.

In her last year, after a long break from death stories she became very agitated one night and in frustration at not being able to figure out what she was wanting to express I went to the recitation of the alphabet. We eventually got to 'R' and a certain vowel sound following it and that was the thing. I had hit it. But I had no idea what 'it' was. It took me another day and the next evening until I realized what 'Ray' meant to her. She wanted to hear about her friend from years ago whose name began with that syllable. After trying all the different why where how words it turned out that she wanted to know 'who told me'. Who told me about this child being near death because this precious child had become ill very quickly and very quickly was on life support near death as the family and friends gathered around at the hospital to say goodbye.
The story for Lueza was simple. I told her that I drove to school on a beautiful May day and that when I pulled into the parking lot one of the teacher's aides was clearly waiting for me. Immediately I knew that something was very wrong. She came to the window of the wheelchair van and told me that this child was going to die that night and the mom, who was my friend and connected to me through a strange coincidence, wanted me to know. This was the story that I told Lu over and over again in 2010. Who told me? Miss Laura told me. And I picked up Lu and took her home and asked our caregiver to stay a bit longer so that I could go into the hospital in San Francisco and join the vigil and say goodbye.

Who told me? My husband called me where I was working 400 miles away and about to load the car to come home. My cell phone buzzed because the ringer was off and he probably paused and made a strange sound and I probably started shouting 'WHAT.....WHAT?????' and then he told me. 'Luezie died'. Just that. She was alone in her room. She was about to get taken to see 2 doctors but she died in her bed. On her futon in front of the giant flat-screen television where she watched her favorite movies.
I remember screaming. And then. Don't call anyone. I don't want her moved. I'll get on a plane.

Lueza would be obsessed with this story. How did it happen? Who told me?

She must have had a massive infection that overwhelmed her body. Sepsis. Something fast and furious swept her away.

Do you see? How can you write this stuff?
Something fast and furious.
I don't know what the fuck happened.
I don't like to use the word 'fuck' in print but I do not have words.
She was swept away by a massive wave.
The doctors said not to bring her to the emergency room because there were too many sick kids and she was so vulnerable.
They knew her well. They loved her. She had been through it all. They just kept saving her.

We all knew that she would have a short life.
Everybody knew.

Lueza loved life.
I have no idea if she was able to think about any of this.
Did she know how delicate she was?
Did she know that her parents were terrified for 9 years?

She never seemed afraid at the hospital. It was like a big social event for her.
She kept me calm.

So now I'm like Lueza, obsessively asking 'what happened?'

Remembering Joy

Didi I already post this joyous photo of Lu? 

It has been so long since I have posted anything. And I still have stories to tell. 

I am finally home after a nine month tour.

Close to her room all the time.

 I have been to a psychic who knew things about her that are impossible to know unless you were her family or friend or teacher.

Sometimes I lie down on her futon and scream and cry until it stops. 

I want to tell you about keeping her close to us after she died at home.

How we carried her to the downstairs extra bedroom where it is always cool.

How I knew what to do. How my friend called the funeral home and said that she could be with us until 24 hours had passed and then she would need to be moved to their place.

We visited her every day. She was in a room on a bed-like table with a little peach colored cotton blanket.

We kissed her and held her hands. We had a few visitors. Mostly our family of helpers who had taken such care of her. Sacred time.

Lueza with Hat and Tiger