Life and death

by Julie Lunn

As I write, the tragic case recently hitting the news headlines, of baby Charlie Gard, has drawn to its deeply sad conclusion. Charlie was born with a genetic defect; he had a rare mitochondrial disease that causes the body’s cells and organs to shut down, so that he had brain damage, was deaf, blind, and unable to breathe or move by himself. Earlier this week Charlie’s parents, Connie and Chris, conceded to Charlie being allowed to die in a hospice, and now baby Charlie has died: the close of a long journey, even if a relatively short one chronologically. This journey has taken the parents from a battle with the courts, seeking to permit them to take their son to the US for experimental treatment; to an agreement to allow Charlie to die when Charlie’s condition deteriorated and the treatment, which was always extremely limited in its possibilities, no longer offered a possibility of meaningful life; through the fight to allow him to return home to die, but because of the difficulty in providing the necessary ventilation requirements at home, coming to the agreement that Charlie would die in a hospice. Yet, even this was complicated, Charlie’s parents wanted him to be kept alive in the hospice for a week or so, to spend some final peaceful time with him, but there were financial and practical constraints – the need of finding and possibly funding a team who would support him during that time. It wasn’t possible and shortly after being moved to a hospice, Charlie died.

This case has given rise to emotionally charged, emotively expressed feeling and language, even as far as death threats being issued against staff at Great Ormond Street Hospital by some ‘supporters’ of Charlie. There have been numerous opinions expressed about the state ‘playing God’; about court and medical control overriding the wishes of parents; about suffering and the inability to cure all illnesses; about the right to life and the right to be able to die in dignity, without the prolongation of pain; about parental needs and desires, and what is best for the child.

The issue has been rife with ethical dilemmas and the difficulty is, it is possible to empathise with the various positions. Of course the parents wanted their child to live, and be well, and flourish; of course the needs of the child are paramount: was he suffering? What sort of life would he have lived, even if the hoped for treatment had enabled him to do so? Of course doctors are committed to doing what is best for each child they treat; and how hard for the judge to make decisions which determine the future lives of all those intimately involved. Many became involved in the debate – Donald Trump, the Pope, journalists, contributors to Twitter and Facebook with opinions on all sides.

For the parents, Connie and Chris, their reality is that much has had to be relinquished, and the decisions they have had to make have been from a place of deep grieving and loss.

It is a characteristic of our generation that we find such relinquishing, such powerlessness difficult. We want it all. We want to be able to control, to make things happen; and the advances in science, medical treatments, and understanding about living a healthy lifestyle, offer so much more hope for that generally.

But the reality of human life is that we can’t have everything the way we want it. We can’t have life without death. Death is a reality of our existence. We have pushed the experience of death as far away as we can. The Christian gospel, however, is about death and resurrection. Jesus does not avoid death. Indeed, his death and resurrection is the central focus of our faith, the means through which salvation comes to us.

We need to be able to relinquish; yes of course to love and to care and to fight for the best, but also, when it is necessary, to relinquish, to embrace death, and to grieve, trusting to the resurrection life God offers. The work of relinquishing is, according to Richard Rohr in Falling Upwards, the work of the latter half of life. The first half of life being about accrual, gathering to oneself; the second half is about letting go, relinquishing, simplicity. There are no set ages when these stages take place. For Charlie’s parents relinquishing their son has come very early in life. But the spirituality of relinquishing is something we all need to embrace.

Nothing can prepare us for the sort of relinquishment that faced Connie and Chris Gard. Yet, ultimately, we are all called to relinquish all to God. This spirituality of letting go of power, of the desire to control, of simplicity, lies at the heart of who we are and what we believe; ‘I am no longer my own, but yours.’