September 20, 2012 was the one-year anniversary of the repeal of Don’t Ask, Don’t Tell. This discriminatory policy prevented gay, lesbian, and bisexual service members from serving openly in the American military. This meant that for the first few years I was with my spouse, she couldn’t speak openly about me or our relationship. She went to military functions alone, didn’t attend family events on base, or talk with her fellow service members about her personal life.
This also meant that when we married in June of 2011, she was at risk of being discharged simply for marrying the person she loves. Fortunately, the repeal went through, and now she can serve openly.
You know who you are.
You put your own life on hold, move across the country to sit by the bedside.
You process the hospital bills, pay them, know they matter more than the car you had thought you needed.
You explain patiently, one more time, to the one who won’t remember.
You make 100 phone calls searching for a kidney donor.
You hold the shaking body through the nightmares, even in your sleep.
You take time to find the one food she will still eat.
You rub ice chips on his lips, and then chapstick.
You find hours you don’t have, rush to the hospice. You’ll sleep later.
You know who you are.
You couldn’t do anything else.
It is your privilege and your duty to be right where you are.
For the parents, who remember with longing when you could hold that child in diapers, sending out mothers’ or fathers’ intimate care,
“Only the broken heart has the ghost of a chance to grieve, to forgive, to long, to transform.” –Christina Baldwin
I don’t know of anything that has changed me as radically as becoming a parent. When the babies were born, everything changed. Many of the changes were expected—sleepless nights, a focus on the endless cycle of feeding-and-changing, a new identity and priorities, a different relationship with my spouse, and then more sleepless nights. There were unexpected changes, too, and these required more than a modified sleep schedule or a safer car.
As I gained the understanding that my son Adam was developing differently from his twin brother and most children, when I began hearing from medical professionals that his potential and possibilities in life would be “significantly reduced,” I began the process that would change how I see the world and myself. For a time, all I could do was feel my loss and honor my grief.
How on earth can we bring a child into this broken world?
That’s the question that worries me. For as long as I can remember, I’ve wanted to be a father. When I met my wife three years ago, it started to become a reality. The first time we met, I talked about wanting a family. Of course, at the time, she had a boyfriend, so I wasn’t talking about starting a family with her! We were married less than a year later, and knew that we wanted to have our own children soon. Last summer, we got pregnant, and in the next few weeks we’ll welcome our little 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.
“There is beauty in the struggle.”
—Brandi Carlisle
Our Universalist tradition teaches that we are all children of God, regardless of the particulars of our human condition. The love of the divine—or the acceptance of the universe, if you prefer—comes to us unconditionally, for better and worse, in strength and in weakness, in health and in illness.
In our theological landscape, illness, including mental illness, is nothing for which an individual should be blamed or shamed. No blame or shame for our human condition. There is great assurance and comfort in that.
But doesn’t our theology hold a fuller revelation?
“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.
“Caregiving is a defining moral practice. It is a practice of empathic imagination, responsibility, witnessing and solidarity with those in great need. It is a moral practice that makes caregivers, and at times even the care receivers, more present, and thereby more fully human.”
—Dr. Arthur Kleinman, Harvard Medical School Professor and primary caregiver for his wife, Joan
Based on what we know about Alzheimer’s disease and the observations we may make with “eyes to see but do not see” and “ears to hear but do not hear,” we could erroneously conclude that the potential and purpose of persons with Alzheimer’s is all used up. In order to discover their potential and purpose, we must look at them with the “fresh” eyes of one who is looking for the holy. Then, it is up to us—those who know and love persons with Alzheimer’s—to reveal their value so the rest of the world can also see and appreciate them.
“You don’t have to see where you’re going, you don’t have to see your destination or everything you will pass along the way. You just have to see two or three feet ahead of you.”
—Anne Lamott, Bird by Bird: Some Instructions on Writing and Life
What do we want for our children? There is no one answer for all of us, and our individual answers likely change as we watch a child change and grow into a person with particular wants and needs.
But at a very basic level, I believe there are some things most of us would agree we want for our children—love and happiness, perhaps, are a good place to start. Sure, we know that no life escapes heartbreak or sorrow, but our hope is that the scales will tip in the direction of love and happiness.
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Quest for Meaning is a program of the Church of the Larger Fellowship (CLF).
As a Unitarian Universalist congregation with no geographical boundary, the CLF creates global spiritual community, rooted in profound love, which cultivates wonder, imagination, and the courage to act.