Tuesday, November 16, 2010
Friday, September 3, 2010
Just what I needed to hear.
This year we learned that our four-year-old son has a heart condition that may require open heart surgery during his childhood, and will likely require open heart surgery during his lifetime. We also learned that our seven year old has Aspergers syndrome, a neurological difference that means that he will need extra help to learn skills that other kids learn more naturally such as how to perform a gross motor task and how to figure out social interactions. For our son, it means he struggles a lot at school despite being bright and insightful and wise.
When my husband was subsequently laid off from his job ("It's not you, we all think you're great. We just needed to restructure our business," they told him) I was beginning to wonder what the universe was trying to tell us.
So this news from Stephen Hawking comes as a kind of a confirmation: the universe isn't telling us much. Things just are the way they are, we don't need God to explain it.
My second thought about Stephen Hawking's new book was about his disability. I thought, "it's interesting that someone with his disability and long-term prognosis would figure a way that we don't need god, rather than a way that we do. I mean, shouldn't he be wanting there to be a purpose, meaning, afterlife, God, etc.?" A patronizing thought, considering we're talking about Stephen Hawking. But still, it's what I thought--I wondered about Stephen Hawking's suffering and whether it would trouble him to believe there might not be any God at all.
In the last few months as I've researched my children's disabilities, I've done a lot of thinking about this question of why. Why did this happen to my beautiful children? Why me? Was it because of something I did during my pregnancies? Is it because I'm not a good enough person?Are we being punished somehow?
One of my favorite passages is when Job says (21:23-26)
One man dies in robust health,The story of Job is that he is suffering, horribly sick, his livelihood destroyed by misfortune, and his friends gather around him to comfort him, but all they can think to say is, in effect, "God has a purpose," and "Repent -- the righteous are rewarded, the evil punished."
All tranquil and untroubled;
His pails are full of milk;
The marrow of his bones is juicy.
Another dies embittered,
Never having tasted happiness.
They both lie in the dust
And are covered with worms.
So God does come, and says, basically, "Who do you think you are, Job? I'm before everything and stronger than everything, I know more than anyone and can defeat anyone who is against me."
And Job repents, with one of my favorite lines in all of literature:
I spoke without understandingIn my notes from the pub, I wrote, "Job is blameless in his suffering, and he doesn't know shit.
Of things beyond me, which I did not know.
Hear now, and I will speak;
I will ask, and You will inform me.
I had heard You with my ears,
But now I see You with my eyes;
Therefore, I recant and relent,
Being but dust and ashes."
Everyone suffers. It's just the truth. We make ourselves feel better by thinking, it could be worse. We feel sorry for others. We promise, I'll be better and different and then my future will be different. If I try hard enough maybe instead of dying embittered I can die with "pails full of milk."
In the midst of our despair, God may appear to us out of a whirlwind and tell us to shut the fuck up. But more likely we will discover in some mysterious and ridiculously undramatic moment that we are loved, as Job's friends are loved, despite our imperfections and dumb ideas about the universe.
We don't need God, and yet meaning appears. I believe in transcendence, and believe I am dust and ashes. Somewhere between those two beliefs is where I'll have to live.
Friday, May 14, 2010
We're relaxed and smiling after a frustrating, tearful, stressful, fight over whether he, a four-year-old, can swallow an adult-sized pill. At one point I was so angry at his refusal that I almost (almost) threw a plate onto the kitchen floor. In my mind it shattered, but my body carefully placed it on the kitchen counter.
His dad and I tried holding him down and putting medicine-laced yogurt into his mouth and holding his mouth closed. His nose and mouth were covered momentarily and I thought, we are suffocating him. We tried joking, we tried threatening. We had started with bribes and promises of how proud we'd be. We ended up so angry we were shattering.
Finally I became the boss. "Time out until you are ready to take the pill." Confident, no longer angry, I told him he could do it. He did it, and we all dissolved in a pile of hugs and praise and relief. I love you so much, we said. I'm so proud of you. I knew you could do it!
Taking a pill this size is a tall order for someone his age, but I've seen him do it three times, twice during our overnight stay in the hospital this week. I've also seen him take what he calls his "small white pills that are just white and small" -- beta blockers intended to prevent the aneurysm in his ascending aorta from growing larger until it bursts.
He needed to take this pill to get rid of strep throat, and he needs to overcome strep so we can restart him on a new beta-blocker, because his small white pills caused his blood pressure to drop so low he couldn't stand up.
So today it is the big pill, tomorrow we'll add a new beta blocker and watch for signs of dehydration and over-medication--the combination that landed us in the hospital for an overnight this week. After a week, the big pills will go away, and we'll slowly increase the beta blocker and hope the next time he gets sick his body can handle it and he won't need iv fluids. When he went faint in my arms, floppy and unable to answer questions, I thought it was his heart--I thought, it's happened. His heart has exploded. I called 911. But it wasn't that. It was just his medicine was too strong and he had a case of strep throat.
My son's aorta is enlarged because the heart valve that controls the blood flowing through his aorta isn't shaped right. When we learned this a couple of months ago, the echocardiographer showed me what his brother's (normal) aortic valve looks like: with each heartbeat three flaps open wide, hugging the aortic wall; then snap precisely shut, intersecting in three ridges that look like the emblem for Mercedes Benz. But our four-year-old has two flaps inside his aortic valve. The third is fused in place, leaving two valves flapping open and shut imperfectly, like slightly leaky fish lips.
This morning I took him to his pediatric cardiologist, a specialty you know exists but can't quite picture until you shake her hand. My son and I sat in the waiting room with serious-looking parents and children at play, and my son played peek-a-boo with a little baby in a stroller. She smiled and gnawed her cheerios, and her mom flashed a worried and distracted smile, then asked her father, "Why are they taking so long? I hope nothing's wrong."
I looked at her worry and saw my own. I thought, here I am, a mother among mothers in a pediatric cardiology waiting room. I said something to my son about going to get a treat at the coffee shop afterwards, and the other mother looked up and said, "There's a healing garden on the eighth floor. You should take him there and he can pick out a stone to bring home with him." I said, "Oh, a healing garden? What a nice thing to have here." With weary warmth, she agreed, "It's a good place." Our eyes connected in a way that scared me. I looked away.
We rode the elevator upstairs. The doors opened and I read, pediatric oncology. I noticed flyers advertising support groups for parents of children with cancer. Things could always be worse, I thought. Beautiful flags decorated by children decorated the hallway. "Think positively!" one said. "Hope, Peace and Love" offered one. Another challenged me, "Live Strong-- I Do!"
The healing garden is a peacefully landscaped balcony with glass walls overlooking the city skyline, Charles River, and Longfellow Bridge. You can see the Red Line subway trains move in and out of the Charles Street station, and you can see the Citgo sign that overlooks Fenway Park. My son threw pennies into the water of a polished-stone fountain and I made a wish on each one. My first wish was too small--I want him to make it to being a teenager without needing surgery. He wanted another penny, another wish, so I wished, "I want him to grow up and become a man and have a family." A third penny, "I want him to be happy."
My son drew a scribble and I wrote in the guest book--our names and "pediatric cardiology patient and his mom feel thankful for this place." My son selected a stone--smooth and brown with layers worn away to reveal black rings like a topographic map. He handed it to me. It was bigger and heavier than I thought it would be.
Wednesday, February 17, 2010
I was interested in the way that the community balanced the values of duty or obligation against the dictates of individual conscience. I was also interested in how concretely they put their feminist values into action. Like many utopian communities associated with Unitarian Universalism, they believed in compensating women for their labor outside the home, but remarkably, they also compensated mothers for the raising of infants and for household tasks. While there were gender divisions--men didn't take up pots and pans--women did assume leadership within the community and carry out work traditionally assigned to men.
Abby Price was one of their most outspoken leaders, and she had a lot to say at major national feminist conventions, particularly about the way that economic injustice led to moral ills such as prostitution. Really, really gripping stuff--ahead of its time in so many ways.
Anyway, I wanted to share my conclusion from the paper because I used it as an opportunity to diverge from the academic issues into the question of why someplace like Hopedale matters. The paper had some errors but got an A (stands for Awesome, btw). I learned a lot.
Hopedale’s Relevance Today
The Hopedale Collection of Hymns and Songs for Practical Christians contains a hymn by Abby H. Price which reads in part:
Intemp’rance be demolished,
See the light, how it breaks,
And oppression all abolished,
See the light;
Let earth’s poor sons and daughters,
See the light, how it breaks,
Drink free salvations waters,
See the light;
Come of Savior! hasten on,
Make earth a happy home.
When she prayed, “Make of our earth a happy home,” Price evoked the love of an egalitarian family as a model of hope for the wider world. Violence, domination, and individualism make for unhappy homes and unjust political systems. While Hopedale’s interpretation of these “family values” would necessarily have been challenged to include same-sex partnerships and other family structures not recognized during this time period, it is clear that the underlying foundation of love, equality, respect and mutuality are the ingredients of joyful homes and a better world.
Beyond Hopedale’s boundaries of geography and time, feminists have struggled to address inequality at all levels of human interaction. The battles that were easiest to win were those that were fought on male terms—opening male spheres to women while demanding few changes to the way women and men organized and ran their households. Feminist victories in demanding support for children and mothers would have affected women of all economic classes, but these reforms have been much slower in coming. Opposition by men to granting women the right to vote was overcome long before women earned the right to be free from violence in their homes. As a society we have yet to embrace our responsibility to children. While social safety nets do exist, they are tattered. Our politics continues to idealize an elitist construction of motherhood that encourages affluent and highly-educated women to stay at home with their children or pay for expensive private childcare and preschools, while offering shoddy subsidized childcare and demonization to poor women, judging them as bad mothers for “leeching” off the welfare system to provide for their children’s basic needs.
Contemporary platitudes claim that “children are our future,” yet today we fail to provide children with the richness of opportunity and nurturance provided at Hopedale over a century and a half ago. It is hard to imagine what it would look like if the boundary between home and workplace were as fluid as the boundaries between family and community at Hopdeale—if baby swings hung from the doorways of meeting rooms and teenagers were invested with the responsibility of providing moral instruction to younger children. It’s nearly unthinkable that mothers might be compensated by their community for the labor involved in nursing and nurturing infants. And it is considered both radical and self-serving to call for free communal childcare for all parents, in order to maximize their contributions to the broader workforce, while offering flexible hours to parents to allow them to maximize the time they spend raising their children.
Paradoxically today, all kinds of individualistic decisions are justified through reference to our children—we close our doors, buy “safer” SUVs and speak of “doing what’s best for my family.” With the best of intentions and often with painful deliberation, parents blessed with resources and therefore options are confronted with choices that force us to weigh our individual children’s needs against broader community goods. We could learn a lot from Hopedale, which did not romanticize childhood or use child-raising as an excuse for indulging in selfishness. Parents were also not expected to be any more selfless than other members of the community. They were not expected to sacrifice their own fulfillment at the altar of raising perfect children, nor to sacrifice their children in the name of personal fulfillment.
If the residents of Hopedale failed to multiply and replicate their experiment, they did multiply their beliefs through the most common means—their children themselves. While most of Hopedale’s children grew up to lead rather ordinary lives, their memories of Hopedale are among the community’s most evocative and moving documents. Some stayed in the community, others moved on. Lucy Ballou Heywood and her husband devoted themselves to the task of editing Adin Ballou’s unpublished works and distributing them to libraries around the country. Hopedale’s children kept the community’s ideas alive.
It would behoove those of us who work for justice, peace and equality to do so not only through our public efforts, but through the most basic means by which we can transmit moral lessons into the future: our children. As we face new ecological and political challenges, our children will be saddled with the work of solving problems we and our parents set into motion. On the most literal level, the future depends on the values we instill in the next generation.
As we face our future, we must recognize that individualism and freedom must be balanced against the values of sacrifice, duty, and interdependence. Children are both a physical gift to the future, and among our greatest teachers of these values. Freedom means nothing to a parent cradling an infant who is not hungry, has a clean diaper, and is not in pain. Sometimes babies cry, and sometimes we must learn humility about the limits of our power. We are humbled, and also strengthened by our children. Not only my children, but all children are a gift from God sent to teach us about sacrifice and love. We owe it to them to learn this lesson.