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If you missed me in person, here I am reading at the ‪#‎ListenToYourMother‬ show in San Francisco. http://bit.ly/29HYgaS  Ariela didn’t want me to write about her, but here’s one story she really liked.

More than a Cookie

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It’s Girl Scout cookie time. I bought a couple of boxes a few days ago. The Scouts were in a prime spot, outside Lunardi’s Supermarket. Location is everything. I remember standing in front of Safeway with Ariela and her troop. She used her communication device to call out to customers, “Girl scouts cookies. Would you like to buy some Girl Scout cookies?” Her digitized voice sounded like a girl’s version of Stephen Hawking. People stopped. Then another member of her troop would swoop in to close the sale. Continue reading

3 Lessons from Pre-K

iguanaI read a story in Huffington Post last week about teaching kindness in kindergarten. Who could argue with that? Comments came in with praise for the program.

The story brought back memories of my daughter’s pre-K class. We had just moved to a small town in Massachusetts. It was late in the school year when I rolled Ariela into class. The teacher must have told the children that Ariela could neither walk nor talk, but that she could hear and understand everything they said. I saw the children at pick-up and drop-off and the few times I volunteered in the class. Many of them wanted to help. They brought her the crayons and gave her a turn at petting the class iguana. They understood that she needed extra time to do just about anything. Lesson #1: Patience.

The more the kids got to know Ariela, the easier it was to be friends. The talkative ones did all the talking and the quiet ones moved the puzzle pieces and sat next to her during story time. Ariela had all the qualifications of a good friend. She was a good listener, never complained, let you chose the games, and could be trusted to keep a secret. She would never abandon you. One little boy made a ceramic dragon for Ariela in art class. Lesson #2: Thoughtfulness.

Ariela had a one-on-one classroom aide. There were at least three during Ariela’s year and a half in pre-K and eight in the three years we lived in that small town. Some of Ariela’s aides were better than others. I’m not sure how well the aides modeled kindness. One of her aides was arrested for disturbing the peace. Another wouldn’t take Ariela outside for recess, because it was too much trouble to put on her parka and hat and boots and mittens.

Those aides could have used a lesson in kindness. They had only to look to some of the children for guides.

At the end of the school year, Ariela’s pre-K class joined a class from another school for playground activities. A boy from the other school stared at Ariela. He tilted his head and watched from a distance. He probably had never seen a child in a wheelchair before. “How can you be friends with her?” he asked a girl in Ariela’s class. “She can’t even say hello.”

Ariela’s classmate became visibly irritated with the boy. “She can too say ‘hello.’ She says ‘hello’ with her eyes.” Lesson #3: Acceptance.

A Question for Stephen Hawking

I just saw The Theory of Everything. I put off going, afraid to see things I didn’t want to see. And, yes there were scenes that felt similar to experiences with Ariela – the regression, the first wheelchair, the choking, the loss of speech. Then, Gary reminded me about the time Ariela met Stephen Hawking.

November, 1998: Thousands came to hear Hawking speak in San Jose. Preceding his lecture, he asked to meet with a much smaller group of students who used assistive technology for communication. Ariela’s teachers had briefed her on Stephen Hawking. She was excited to meet the celebrity scientist. We arrived early. Doormen at the Fairmont Hotel greeted her at the door. We rolled her down a long corridor with flocked wallpaper and crystal chandeliers. The pomp and grandeur of the place wasn’t wasted on Ariela. Dressed in a new outfit and patent leather Mary Janes, she felt like she was a celebrity, too. Questions for the professor had to be submitted in advance, and her question had been selected.

There must have been about one hundred students of all ages in the conference room that afternoon. Ariela was one of the youngest. When her name was called, Hawking rolled toward her. I had pre-programmed Ariela’s communication device with her question. All she had to do was hit her switch with her chin. She paused. I hoped she wouldn’t take too long. We all waited. Then, she hit her switch, and with her synthesized voice she asked, “When you were in the fifth grade, what was your favorite subject?”

It took Professor Hawking a few moments to respond. He had a small communication device mounted on his chair. It looked like he used one finger to scan through what must have been thousands of letters, words and phrases and another finger to select. “How old are you in the fifth grade in the U.S.? We have a different system in England.”

I suppose I was a bit awestruck by the man and the event. Forgetting that Ariela had a button on her device to say her age herself, I jumped in and answered for her. “She’s ten.” To this, Professor Hawking answered, “Science. That was my favorite.”

The movie is beautifully executed. His story is told without sentimentality. It portrays the man as the very real person he is – exceptional and flawed, as we all are.

“We are all different, but we share the same human spirit. Perhaps it’s human nature that we adapt and survive.” Stephen Hawking July 18, 2013.

On the Border

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“So, Jack, is it safe?” I asked my brother.

“Yes,”he answered. I detected a bit of annoyance in his voice. It wasn’t the first time I had posed the question.

When Ariela was alive, I would never have considered risky activities. But without her, what have I got to lose?

I had been to Juarez, maybe twenty-five years ago, before anyone heard about drug wars. I went to see a tiny pediatric orthopedic clinic where my brother was volunteering. Back then, FEMAP’s Hospital de la Familia was a two-story building with about six beds all in one ward, closet sized rooms where Jack saw his patients, a small pharmacy, and little else. In spite of drug wars and ever-present poverty, the little hospital that could is now four stories, 110 beds, an OR (operating room), a NICU (Neo-natal intensive care), X-ray, and a nursing school. And, in the past three decades, my brother has crossed the border every month and treated over 7,500 children.

Anna, the executive director, gave us a tour. “Some of our equipment may be outdated, especially by U.S. standards.” This is a hospital for people living in poverty. Patients and families pay on a sliding scale. FEMAP started with family planning and women’s and children’s healthcare. Today, their programs provide healthcare, education, mobile medical units, nutritional counseling, and even microloans.

About a month ago, I sent Ariela’s medical equipment and supplies to FEMAP. Pulse oximeters and nebulizers and enteral feeding bags and C-PAP machines and therapy balls and medications, opened and unopened, that I don’t want to remember. Plus boxes of braces and orthotics from two orthotists, John Allen and Joe Muller, who wanted to help.

“Everything you sent is being put to good use,” my brother said.

“And the wheelchair? Is it here, at the hospital?” I admit to wanting to keep her chair. Her essence was in that chair. She traveled everywhere in it, out of the house and out of the country. The seat and back were custom molded to fit her frame. Paint splatters covered the arms. It had been recently repaired. Good as new. Looking at it kept her close to me.

Jack hesitated.

Rosy, our friend and a school administrator in New Mexico, nodded. “It went to a girl in my school district who is from Central America. She can go to school, but because she is undocumented, she doesn’t qualify for Medicaid. She can’t get a wheelchair. When the mother saw Ariela’s beautiful chair, she wept.”

I don’t know anything about the girl who has Ariela’s wheelchair. I can’t imagine the great risks that mother took to bring her child into the U.S. and the risks she lives with every day. Her child deserves a nice chair.

November 17

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Today is Ariela’s birthday. She would have been twenty-seven. We always celebrated with a party and presents. I don’t know what she liked better — being the center of attention or getting all of the presents.

When she was in elementary school, we invited her entire class to her parties.

My mother would never let me leave anyone out. Even Evelyn Miller who had cooties. “You’ll invite Evelyn or there won’t be any party,” my mother said. “Remember, you went to her party.”

Nowadays, it’s amazing how many people don’t reciprocate. Even kids who came to Ariela’s parties year after year. The little girl who lived four houses down. The twins in her Girl Scout troop. Maybe those girls didn’t have parties.

One girl in her class always included Ariela. For one birthday, a long white limousine drove everyone to a restaurant atop a skyscraper in San Francisco. I hear that girl moved to New York City. I’m sure she’s building skyscrapers now.

Ariela had lots of bowling parties. Duck pins when we lived in Massachusetts. Ten pins in California. She took friends to the San Francisco aquarium on two birthdays. Another year to the opening of a Harry Potter movie. At twenty-one, she invited her friends to a nightclub. A few years ago, a friend threw her a surprise party. A lot of great parties, just not enough of them.