2015 Bridge School Benefit Concert

Clouds of Patchouli oil. Marijuana vapors. Garlic fries. Plastic hand-buckets of icy beer. Disabled adults in wheelchairs flying around faster than bicycles. Tiny men that ended at the waist strapped into massive electric wheelchairs controlled with straws or joysticks or an arc-shaped leatherette headrest that housed the steering and acceleration. A stage covered in rock stars, music engineers, guitar handlers, pop stars, folk singers, a legendary producer and severely disabled children in wheelchairs. Children without speech but with wide ranging vocal pyrotechnics. Shrieks and laughter. Grunting. Inquisitive moans. Hands and arms twisted with spasticity and athetosis. Draped in drool scarves and medical equipment hung out of sight and sometimes delivering liquid feedings straight to a gastrostomy tube. Portable oxygen tanks just in case. Medical tubing snaked into backpacks hanging from the hardware of the child’s seat stuffed with diapers and cans of formula. Medications for seizures. Parents and children who survived catastrophic diagnoses. Brain damage from birth injuries, in-utero infections, encephalitis, genetic tricks, brain malformations and accidents. Joyful students and former students. Accompanied by parents or caregivers, friends and siblings. Sharing the stage with musician artists in front of 20,000 fans. Neil and Pegi Young at the center. The annual Bridge School Benefit concert weekend at Shoreline Amphitheatre in the San Francisco Bay Area.

Pegi Young started the school about 30 years ago with another parent. Both had sons with significant physical disabilities and were unable to speak. Pegi was married to Neil Young and so began the annual Bay Area ritual of the Bridge School Benefit concert.

I saw a review of this concert in 1997 in a discarded section of the New York Times at Einstein Bros bagel shop across the street from United Cerebral Palsy where I brought Lueza to preschool. My morning ritual. Travel from Upper West Side of Manhattan to east 23^rd street. Try not to think about killing myself. Calm down Lu in her classroom and cross 23^rd street to medicate myself with strong coffee and buttery toasted poppy bagel. And there’s a review about a Neil Young concert to benefit a school for disabled children. And they’re describing not only how great the concert was but the stage was covered with students. They were part of the concert stage. Children in wheelchairs with computer devices attached for communication. Speechless children learning to ‘speak’ via machine. They were describing kids like Lueza.

We moved to California about 35 months later. Lu started Bridge School in late August of 2000 and 2 months later we went to our first Bridge School Benefit concert.

I want to make this short.

It was ecstatic. Pushing Lu up the hill to the special entrance for students and rock stars. Special passes around our necks. Dora in our arms. A light rain falling. A lineup that included Foo Fighters. Who? Dave Matthews Band. I had maybe heard of them. Red Hot Chili Peppers. Definitely. And the lesbian identical twins Tegan and Sara. From Canada like Neil Young. Dora and Lueza discovered Rock and Roll. I rediscovered it. We all fell in love with Dave and Dave. Grohl and Matthews. Their music. Their generosity at being there. Their handsome beauty. It was bliss.

This year was my 5^th concert without Lueza. Usually I’m there with Dora but this year she started music school in Boston and I didn’t fly her out. Jacek didn’t want to come.

I spend most of my time on the stage behind the kids. Some of them are former classmates of Lu’s. Many are the new and current students. And there are always the ‘big kids’ who are in their thirties. Many of the children have died since we moved to California. Many more are thriving and happy. I’m still here loaded with laminated VIP passes from the past 15 years and photos of Lueza around my neck. It is a love zone. For the students and their survival and joy. For the artists that make this phenomenal music. For Bridge School. And in gratitude for Pegi and Neil Young.

She May Be Lying Down But She may Be Very Happy

This is what my husband Jacek (yat-sek) said to me when Lueza was a baby and we didn't know how severe her birth injury would be. Would she have a limp? When would she walk? Would she be like Daniel Day-Lewis in 'My Left Foot'? I was starting to get hysterical as I contemplated all possible scenarios and I whined to him: Will she always be lying down???????
To use the word 'whining' is not friendly to myself, I was terrified for our baby, but my hysteria was a problem at times…….
Jacek was calm.
He doesn't even remember this moment.
She may be lying down but she may be very happy.
Everything shifted.
I could breathe.
We would be okay.

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.