Parenting a Child with a Life-Altering Illness or Condition
“Like they tell you on the airplane: first, put on your own oxygen mask. Then, you’ll be able to put your child’s on them.”
Bad things happen to good people. We know this, but when something happens to a child, when they are diagnosed with a serious illness or condition, their illness also “happens” to their parents or caregivers. Caregivers often must put the rest of their lives on hold to attend to the sick child. But those of us in that role must also take care of ourselves so that we are strengthened to give that care.
Realities of a New Baby
“A new baby is an amazing miracle, radiating promise, evoking some of the most intense feelings of love. And at the same time…completely exhausting.”
We welcome new babies into our communities with rituals and ceremonies. We dedicate ourselves, as parents, family, and church members, to helping to raise this child to feel valued, loved, and able to fulfill their potential. Rather than seeing them as tainted by original sin, we see them as whole and beautiful, just as they are.
They are human, though, and just at the beginning of their becoming. They are, as the behaviorists say, “developmentally appropriate.” Which means incredibly needy, unable to adequately communicate, and completely dependent on their parents. Especially at 3 am.
Domestic Abuse and Intimate Partner Violence
“Let love be genuine; hate what is evil, hold fast to what is good; love one another with mutual affection; outdo one another in showing honor.”
—Romans 12:9-10 (NRSV)
In his letter to the new Christian church in Rome, Paul advises a community struggling to maintain positive and loving relationships following a period of upheaval. His words resound through the ages as an admonition to treat each other with respect and affection, to honor one another.
As Unitarian Universalists we take this advice seriously. As a community of faith we covenant to honor each other even in disagreement and to recognize the inherent worth and dignity of every person.
In a relationship that includes one partner exerting undue power and control over the other, these admonitions and shared wisdom seem to be distant dreams. One party is habitually dishonored and the other loses a piece of humanity by terrorizing the other with threats and, too often, real violence.
Missing God
“As our faith expands, we can find new, more complex ways of perceiving the unknowable.”
For many of us, it proves impossible to limit religious thought to a narrow creed. The more we learn, the more difficult it becomes to restrict ourselves to the definition of ultimate reality, or God, that we grew up with, or held when we were young. James Fowler writes about this in Stages of Faith: The Psychology of Human Development and the Quest for Meaning. But as we progress through different stages of faith development, we may find that certain concepts we felt we had outgrown still hold meaning for us. One of these concepts may be “God.”
Living with Mental Illness
“The struggle itself toward the heights is enough to fill a man’s heart.”
—Albert Camus
Sisyphus was a Greek god famous for his trickery and deceit. When he died he was condemned by the gods to roll an enormous rock to the top of a mountain every day for all eternity. Every day he would roll it up the mountain and then the rock would roll back down to the bottom.
Albert Camus likened Sisyphus to an absurd hero; because he knows what will happen after the rock is rolled to the top, yet he remains content in doing so. What the gods intended as punishment, Sisyphus does not see as such.
Our faith teaches us that we are seekers. There are no definitive answers. There is no correct path. In this way, our faith demands a lot from us. Our faith does not give us a savior, we must find our own.
The same is true of mental illness. It is a journey. There are no definitive answers. There is no correct path. Our illnesses demand a lot from us. There are no universally guaranteed medications or treatments; we must find what works for us.
The Spiritual Act of Complaining
Our culture rewards those who wear an ever-positive attitude. But sometimes, what is honest and right is to express our hurt and anger…to admit “this stinks!”
Optimism is often held up as a cardinal virtue. No matter the situation, we feel we should be plucky, searching for that silver lining, and courageous. With lips trembling, we bravely say, “I’m not going to have a pity party.” We stiffen our shoulders and brace for a hit, a plastic smile on our faces.
Yet the religious faith of Unitarian Universalism is based on authenticity. We encourage people to be their genuine selves in our churches, rather than mouthing things they don’t believe, or pretending to be something other than what they are.
Surviving Suicide
That which we sow we shall reap:
when we sow our thoughts we reap our actions;
when we sow our actions we reap our habits;
when we sow our habits we reap our character;
when we sow our character we reap our destiny.
—Hindu proverb
Many of us have long since mastered the art of despair. Many of us have fallen into despair’s trance, memorized by thoughts of suicide.
In some religious circles, the act of killing oneself is a subject of great controversy. Some traditions use their power to shun and shame those who have committed suicide and have the audacity to condemn souls into further despair in the afterlife—as if they had such power. These demeaning beliefs are just as harmful as the religions that turn their back on those in this life. As Unitarian Universalists we seek to build a new way, based on acceptance and love.
Claiming Atheism
“When I became convinced that the universe is natural—that all ghosts and gods are myths—there entered into my brain the joy of freedom. I was free: free to think, to express my thoughts; free to live for myself and those I loved; free to investigate, to guess and dream and hope; free to reject all ignorant and cruel creeds; free from the fear of eternal pain; free from sanctified mistakes and holy lies; free from devils, ghosts and gods. There were no prohibited places in all the realms of thought; no following another’s steps; no need to bow, or cringe, or crawl, or utter lying words.”
—Robert Ingersoll
A study conducted by the University of Minnesota found that atheists ranked lower than “Muslims, recent immigrants, gays and lesbians and other minority groups” in ‘sharing my vision of American society.’ Atheists are also the minority group most Americans are least willing to allow their children to marry.
This kind of prejudice makes it difficult for those of us who have rejected traditional religion, or perhaps were never taught conventional religious concepts, to be open about our beliefs.
A Child in the Hospital
Sleep, my child and peace attend you, all through the night. I who love you shall be near you, all through the night. Soft the drowsy hours are creeping, hill and vale in slumber sleeping , I my loving vigil keeping, all through the night.
—Traditional Welsh Lullaby, Adapted by Alicia Carpenter
Making the decision to have a child is momentous. It is to decide forever to have your heart go walking around outside your body.
—Elizabeth Stone
When your child or infant is in the hospital, ill or injured, you may feel like all of life’s “knowns” are turned upside down. Suddenly unmoored, you may be struggling to regain some control over your life as you seek to protect your child. You may be wondering how this could have happened or why?, wondering “What did we do to deserve this?” or “Where is God?”
You did nothing to deserve what is happening to you and your family. Your child did nothing to deserve the suffering he or she might be experiencing now.
The Deep Thanksgiving of Our Souls
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I have wonderful neighbors who delight in garish inflatable yard decorations. We love these neighbors, but would question their taste if they did not question it for us.
One day, as we walked past their front yard and saw them plugging in the rotating Winnie the Pooh, Tigger and Piglet inflatable Christmas globe, they turned to us, grinned, and said, “That’s right—we’re THOSE kind of neighbors.” They also told us that they might have held off on the Christmas decorations if they’d only been able to find anything for Thanksgiving.
