Friday, July 31, 2009

Good Things

This week, as I ate lunch with a fellow worker, a oolleague burst into the lounge:

"Come to the program, Oscar walked in." she said.

Oscar had a large portion of his brain removed when he was just a few months old, because of uncontrollable seizures. I began seeing him after this invasive procedure. His mom was so very young, just 17 years old. She came from Mexico to join her husband, and this was their first child. Mom had no idea what was going on with her son who was treated at Childrens' Hospital in Oakland. I did my very best to tell her how to position him, how to exercise his limbs, and where to place objects (to his right side), while she struggled to care for him, to take him to his appointments, and to clean and cook. One day I got there and noone was home. I called Mom. She answered after a few rings, saying "I am in hospital, I have just given birth." I had no idea she was even pregnant!!!!!!!!! And then there were two boys to care for! Oscar suffered from right side neglect (he had no idea he had a right arm and leg, or that he could turn his head to the right.) He made fairly good progress, learning to turn his great big blue, black-lashed eyes to his right, and to reach for a toy or his bottle with both hands. But it seemed he would never be able to sit without help, let alone stand up and walk.

I saw Oscar for several months until he began attending our Great Beginnings Program.When Oscar left the program, at three years old, he could stand briefly using a walker, and with the help of someone at his side, guiding his every move. And now, five months later, in he walked!

All of us were so excited, we smiled and exclaimed and hugged him wiping away our tears. His mom said that one day at home he simply got up and walked, alone, without the walker or anyone's assistance. He walked up to every one of us, and then him and his mom said goodbye and they walked away, leaving us grinnning uncontrollably.

Sometimes, in my darkest moments, something wonderful happens that makes everything worthwhile.

Sunday, July 26, 2009

To Blog or Not to Blog

I suppose if I am to keep a blog, then of course I must blog.

I have been coughing and coughing all day - my sore throat began a few weeks ago, with a general feeling of malaise. Because I work with little kids, who are really like petri dishes, becoming ill is an occupational hazard! When I first began this work I seemed to constantly be ill; colds, flus, coughs, viruses - but since then my resistance has improved. The good thing about not feeling so well is that I have to rest, and then I find time to write.

I am imbibing hot teas loaded with ginger, garlic ,and lemon, as well as chicken soup supplied by my neighbors who themselves were recently ill. I gave them some of my emergency supply of frozen chicken soup, and today they gave me their stash, fortified with set-my-mouth-on-fire peppers.

Yesterday I was out at lunch with family members. I spread butter on warm, crusty sourdough bread and was about to take a spoonful of cream of artichoke soup when the volume around me seemed to fade and go flat. It was like when one listens to music on speakers, and suddenly one speaker stops working. This strange sensation lasted quite a while. I ate my food and strained to listen to what was being said in this new world of one dimensional sound. After lunch I bought Sudafed, took one and in a while full volume sound returned. This 'flat' sensation returned today. I am sure the cough and my hearing and my sore throat are all connected.

Of course this makes me think about my 'wee ones.' So many of them have recurring ear infections, especially the ones with Down Syndrome. They also have hearing problems and have tubes inserted into their ears to drain the fluid. It is fascinating seeing them respond to sound after they have the tubes put in. Their bodies move to music and they look in the direction of voices and sounds.

Our bodies and their workings are miraculous. In Mexico City I saw the exhibition Cuerpos Humanos, the controversial display of human bodies which has been shown around the world. For me it was somewhat akin to a spiritual experience, seeing all the systems and their interactions. The three little bones through which the vibrations of sound are conducted look like beautiful delicate miniatures lovingly carved out of translucent mother of pearl. When everything works as it should, we take it for granted, for the most part. It is enough that one tiny thing go wrong for us to appreciate each perfect little system.

So today I drink my fire inducing fluids and contemplate the mysteries of the body.

Saturday, July 18, 2009

I Have a Big Problem

Before I begin blogging in earnest, it goes without saying that all the names of the people with whom I work have been changed.

I have been working with Carmela and her family for over a year. I was initially referred to her five month old son because he was diagnosed with spina bifida and hydrocephalus, and has a shunt from his brain to his stomach.

The first time I went to the room in which she lived, a man was there along with Carmela and two older girls who played on the paved path outside the door. They had to play there, because the 'home' was a room in a house, with its own entrance. I learned that Carmela and her three children lived in the room which she shared with another woman whom apparently worked as a beautician. They shared a shower, toilet, and tiny kitchen. The family ate in the same room which served as their bedroom, living room and dining room. The little boy's crib took up much of the space, and a chest of drawers and crates overflowed with clothes and shoes. The older girls colored on the cement with chalk. They looked exactly like the man, and so did the baby boy who had the most adorable smile. Of course I presumed he was the father, but I never saw him again.

Carmela was from Mexico, and like with all my families, I got to know her slowly over the course of our time together. We spoke in Spanish, but she attended ESL classes, and was hoping to get her cosmetology license, like her roommate. She was in her late twenties, and already the mother of two girls of eight and five. I never saw them much, because they were in school, but the few times I did see them I was impressed by their behavior and their intelligence.

Carmela told me that she had prenatal care for all her children. When she was six months pregnant with Gabriel, the little boy, she had an ultrasound and the doctors told her and her husband that he had spina bifida and hydrocephalus. What is more, they thought he also had Down Syndrome. Of course they were devastated, but there was no doubt they would have the baby. Her husband left her and the girls two weeks' after the diagnosis. Within a month he was living with another woman. He did pay child support for the girls, but Carmela was alone, pregnant, worried, and very depressed. Other than a brother who lived in Fresno, she had no family in the States.

Carmela was obviously depressed, but she had to continue for the sake of her children. Gabriel did not have Down Syndrome, but he had to have a shunt put in his brain to drain off the excess fluid, that would be there permanently. The doctors were not sure just how he would be affected by his spina bifida, but they hoped he would be able to walk.

One morning he was sleeping and Carmela had the TV on. The reception was choppy and erratic, but this morning we could see the pictures for the most part, and the sound reception was okay. She was watching "Casos Realidad de la Vida," one of my favorite programs. Apparently viewers send in letters of real life situations, and these are reenacted. Mostly they are heartbreaking stories with something to be learned from them, for example, to listen to your child if they tell you someone is mistreating them, or to leave an abusive husband, or not to treat someone different like a pariah. I don't exactly remember the contents of that particular program, but it had to do with an alcoholic father. Carmela had tears in her eyes. During the commercial break she told me she was the only girl. Her father was an alcoholic, and although he never physically abused his children, they never had any money for food, because he bought drinks with whatever he earned. She and her brothers were forced to beg for food. Her mother cleaned homes, but she was not well. Carmela never went beyond grade school and she realized the importance of an education. Besides her ESL classes she went to nutrition classes because she wanted her children to eat healthy food. She wanted to move out of the room because she felt very badly that her children lived in these, to put it mildly, cramped conditions. Somehow she scraped enough money together to buy a car. She cleaned homes, and registered for classes at the local college.

Carmela was always petrified that the ICE would come to her home. (Immigration and Customs Enforcement) a not so known branch of Homeland Security. She hoped that they wouldn't take her because of Gabriel, and she had letters from doctors attesting to his medical condition.

The first time I saw the ICE was early one afternoon as I was driving to a family in South Richmond. I saw police with ICE inscribed on the back of their jackets. They stopped cars. I had no idea what was going on, but it felt ominous and my stomach churned as I was waved through the roadblock. I saw a woman and child walking to a police van. I have seen roadblocks in Israel, and in South Africa I saw black men being herded into vans for not having their pass books with them. I thought of Nazis rounding up Jews, But I did not know about the ICE. They are looking for illegal aliens, and since these raids began, families have been separated, parents have disappeared. Apparently the undocumented people are taken to detention centers, usually along the border. Children are not allowed to open the door to anyone, and parents are even scared to send their children to school. Carmela had heard that there were raids that morning. She showed me a pamphlet sent out by the community asking people to come to demonstrations against these raids.

Thank goodness they have not yet come, but Carmela has yet another thing to fear. Eventually she found a small home to rent in North Richmond. Now the four of them lived together in two rooms, with a separate kitchen and bathroom. Friends gave her furniture, and she fixed up this new place nicely. Gabriel progressed well, and was now crawling, instead of hitching himself along on his backside. Her daughters were doing well in school.

One morning when I arrived, she sat on the sofa, then looked at me and said "I have a big problem."

Now what could it be? She didn't leave me a long time to wonder. "I am pregnant," she said.

My head reeled with many questions and my own judgments came to the fore.

The father, she said, is the father of all her children. The one who left and lives with another woman. Apparently, when he came to pick up his kids, he slept with her! Furthermore, his girlfriend was pregnant also.

How could she let him take advantage of her? How could she allow herself to become pregnant? What about birth control? Why does she not have an abortion? What the hell is wrong with him? Has he no sense of responsibility? I looked at this from my vantage point of being an older, educated, self sufficient woman. She is an uneducated, poor single mother who has no self worth. Abortion is totally against her religion, it is out of the question. I had to agree with her, she does have a really big problem. I asked her whether there was anyone she could speak to, and she said she would speak to her daughter's counselor because she needed to know how to tell her children of this latest development.

The following week she was not at home when I arrived. I called and she apologized for not calling me, she had an urgent event come up. It turned out that nature had intervened and she had a spontaneous miscarriage. Sometimes I do believe in a God.

On a subsequent visit again she said "I have a big problem."

I knew she meant it. What now. The ex-husband lost his job, and his house. He had no money for her or his children. Now she had to apply for welfare. Over the next few weeks she told me about the social worker who was never available to help her, and that her application for welfare had been refused, apparently because of computer errors. She spent her days going to school, taking care of her kids, and going to all the necessary offices, including one for free legal aid.

It is now school vacations and her girls are at home. When I arrived for my weekly visit, Gabriel was in his stroller, and the girls had on their coats. Carmela appeared from the back room donning a coat. "I'm sorry," she said, "But I have a big problem."

Yesterday they went shopping at Food Max and left their car in the lot for a long time, because they also went to the welfare office. When they returned they found their car had been towed! "The ICE took it." Said her youngest daughter. That wasn't true, of course, but she had no money to pay for it, so they said goodbye to the car. Now they walk to the various offices, and they had to leave now as she had an appointment with the social worker.

Because Gabriel was doing well, we agreed that he should attend our early intervention program. It would be good for him to learn from his peers. Carmela was initially hesitant, knowing it would be difficult to part from him, but she went to look at the program and decided it would be best for him. He would be bused back and forth as they no longer have their car.

Working with Carmela and her family, I realized I have a big problem in that I cannot change her circumstances. I can work with Gabriel, and be supportive to Carmela, but I cannot solve her many problems. I cannot transport them in my car to the offices, as this would not be legal. I can ask for numbers of agencies who can provide help, but that is the limit of what I can do. I really admire her courage, her realisation that she has much to overcome, and her fortitude in the face of ongoing struggles. I can let her know that I admire her, and I do this.