The chronic sorrow of loving a special child

Parenting is hard to do - harder when the child is born with disability, or when he or she is adopted.
By Chong Siow Ann, Published The Straits Times, 5 Jan 2016

Rosemary Kennedy was born at home on Sept 13, 1918, and although the labour was seemingly uneventful, the nurse in attendance ordered Rosemary's mother to keep her legs closed as the doctor was not yet there on hand to complete the delivery. When she was finally allowed to emerge into the world some two hours later, it was believed that the delay had somehow caused damage to her brain.

She was the third child of the wealthy Joseph P. Kennedy and Rose Fitzgerald, who went on to have six more children. Rosemary's siblings included John F. Kennedy, the 35th United States President, and two US senators, Robert Kennedy and Edward Kennedy.

By her early childhood, it became obvious that Rosemary had intellectual disability: her developmental milestones were delayed and she had difficulties reading and writing. Her father described her as suffering from "backwardness" and was fearful that the stigma attached to this would affect the family's reputation and he strove to keep it a secret. He became even more fearful when she developed into a comely albeit rebellious young lady. Envisioning a sexual scandal that would ruin his sons' political prospects, Joseph Kennedy had her undergo a prefrontal lobotomy at the age of 23. The procedure, which entailed drilling two holes into her skull and inserting an instrument to sever some neural tracts in her brain, left her severely debilitated, hardly able to talk, and unable to take care of herself.

After the disastrous lobotomy, Rosemary's parents did not want to see her and she was shunted to a private psychiatric institution in New York, then to a Catholic facility in Wisconsin where she died decades later at the age of 86.

"Parenting is no sport for perfectionists," writes Andrew Solomon in his book, Far From The Tree: Parents, Children, And The Search For Identity - a meticulously researched and moving work on how parents deal with their "exceptional" children, including those with Down syndrome, autism, and multiple disabilities.

Most would-be parents have some reasonable fantasies and expectations of their unborn child: that it would be healthy of mind and body, would grow and develop into an independent, decent and productive adult - perhaps a flattering facsimile of themselves, and that the experience of parenting would on the whole be rewarding with its bounty of joy, pleasure and satisfaction.

But when the child deviates drastically from that idealised image and when those cherished fantasies are irreparably shattered, parents may react with despair, mortification and rejection.

"Little is more gratifying than successful and devoted children, and few situations are worse than filial failure or rejection," commented Solomon. "Parenthood abruptly catapults us into a permanent relationship with a stranger and the more alien the stranger, the stronger the whiff of negativity... we must love them for themselves, and not for the best of ourselves in them, and that is a great deal harder to do. Loving our own children is an exercise for the imagination."

Loving and doing whatever possible for one's own disabled child is daunting enough but what if the child is not one's own flesh and blood?

LOVING A STRANGER INTO THE FAMILY

Grace (not her real name) was a senior registrar in the surgical department of the general hospital where I was posted as a fledging house officer after graduating from medical school. We - all the junior doctors and, I suspect, a number of the senior ones as well - were terrified of her. She had high and exacting standards when it came to surgery and patient care and had no qualms telling off anyone who fell short while fixing that hapless person with her level gaze - all of which breathed life into that phrase about not suffering fools gladly.

But she is also the embodiment of the cliche of that beloved individual whose forbidding and apparently acerbic exterior belies a vulnerable and tender kindliness.

When she was a young doctor, her mother brought home a premature baby with fair skin and almond-shaped grey eyes. The baby named David had been abandoned by his biological parents and Grace's mother decided that she would provide foster care to this unwanted baby. As David grew, so did the host of problems: he was developmentally slow and had learning difficulties. By then, he was diagnosed to have Prader Willi syndrome - a rare genetic disorder with a number of physical, mental, behavioural and emotional manifestations, including a constant gnawing insatiable hunger which, in time, would lead to obesity and diabetes.

From infancy and throughout his life, David was plagued with a myriad of development and medical problems. Clinic visits, sessions with physiotherapists and hospitalisations were a way of life. Despite this, Grace and her mother went ahead and signed the adoption papers - making David part of the family and assuming all the unceasing responsibilities that came with that - all of which fell on Grace's shoulders after her mother became incapacitated with illness.

"David never grew to manhood," Grace said. "Physically he looked like a child, though bigger with a large body and small feet and hands." The years were interspersed with numerous, various, and wearying surgical and medical travails and other crises which Grace bore willingly and uncomplainingly.

David himself never lost that effervescent capacity to enjoy simple things: going to church and singing, if not always tunefully but always "from his heart and soul", watching cartoons and playing with soft toys even when he was an adult, and loving - in that simple child-like manner - his adopted mother and sister and all his pets.

As he grew older and despite Grace's unceasing efforts to curb his weight, he became so heavy that he could not walk and had to be lifted from his bed with a pulley.

On his last birthday, his 37th, as with his previous birthdays, Grace organised a party in her Housing Board flat and we celebrated it in his bedroom with a television set, a stack of DVDs of cartoons (a favourite was the Disney animated movie Ratatouille, about a young rat which appreciates fine food), and his clutch of soft toys on the shelves and on his special hospital bed.

To be in that room and seeing the interaction between Grace and David was - in Solomon's words which he used to describe a couple with their severely disabled son - "to witness a shimmering humanity".

CHRONIC SORROW

Studies have shown that taking care of children with disability takes a toll on the physical health of parents, leading to more rapid ageing of the body and possibly dying younger. There is the emotional toll as well.

Mr Simon Olshansky, a counsellor for parents with disabled children, wrote of the "chronic sorrow" from the "child's unrelenting demands and unabated dependency. The woes, the trials, the moments of despair will continue until either their own deaths or the child's death".

But this is not invariably or universally true. Studies have shown that some parents found that the experience had brought the family closer to one another, taught them what is important in life, and made them more empathetic and resilient.

Grace has an abiding Christian faith and she sees David as a gift that came with a purpose. "David was sent to earth with a mission to enrich the lives of those he came into contact with and he grounded us in the basics of love," said Grace when David died in August last year.

A mother of two children with multiple disabilities said in Solomon's book: "People always regale us with these little sayings, like God doesn't give you any more than you can handle. But children like ours are not preordained as a gift. They're a gift because that's what we have chosen."

There is something remarkable about this love for such children: an unconditional selfless love for their mere existence, and not for who they might have been or have achieved, and not for some expectation of a reciprocal return of care in the future; but loving them quite simply and purely for what they are and despite what they will never be.

All things said and done, there is also something numinous about such love that brings to mind a line in Gilead, Marilynne Robinson's classic novel: "Love is holy because it is like grace - the worthiness of its object is never really what matters."

The writer is vice-chairman of the medical board (research) at the Institute of Mental Health.