When is it time to die? The Charlie Gard situation

July 26th, 2017

Charlie Gard’s parents have decided to give up the fight. I ache for them in every cell in my body.

Charlie, as most know, was born unable to either see or hear, cannot move or even breathe on his own. Seizures have left him with profound brain damage. Once disconnected from the ventilator, his life will cease within a few moments.

In the not-too-distant past, he would not have lived past birth. Current, and genuinely amazing technological advances, have given him eleven months. Eleven months for his parents to love him even more profoundly than they did before and at the time of his birth.

And now, after a protracted court battle, they will say “goodbye.”

Again, in the not-too-distant past, women routinely bore children who died before they reached five years of age. These multiple childhood deaths are one reason why we think that people from the past lived shorter lives than we do now.

When we average in infant mortality to calculate the “average” age of death, lifespans look shorter. But in truth, people who made it past childhood and survived the periodic wars and famines did live quite long lives. They tended to be healthy into their 80’s and 90’s, seeing a quick decline only at the end.

Our increasingly difficult decisions

But now, we are faced with increasingly difficult life and death scenarios.

Those whose genetic makeup and general life luck who live into the 9th and 10th decades find, instead of a quick decline and quiet death, a long, drawn out dying process. The process too-often quickly depletes their resources and tragically isolates their increasingly exhausted caregivers.

And babies like Charlie Gard who are given a chance to live–which in some cases means an extended dying period–may suffer greatly. We just don’t know because there is no way to peer into their brains.

John McCain’s diagnosis with glioblastoma has sucker-punched the world. This seen-as-invincible man faces an extremely poor prognosis. Glioblastomas kill and kill quickly.

This cancer, as opposed to the many slow-growing brain tumors, literally blasts through the brain, thus its name. McCain and his family have a series of increasingly agonizing decisions in front of them.

My mother’s dying process

In the summer of 2010, my mother, 89 years old and having some physical issues (which she routinely ignored) but mentally sharp, showing not one sign of losing her astonishing acuity, suffered a massive stroke.

During the aftermath, as my brother and sister and I faced the unending number of medical decisions that come from such an event, I began to blog about what we were experiencing and the deep agony of having to make these decisions. I did so just to make it easier for friends and family to keep current without the necessity of multiple phone calls or email blasts.

At that point, few read my blog. But as I continued to write about the challenges facing us, others started reading. They wrote and told me that I was putting into words their own experiences but that they were afraid to speak aloud for fear of condemnation. 

Eventually, several years later, this turned into a book. I named it An Ordinary Death. I called it that because it finally dawned on me that most of us want a simple, ordinary death.

And most of us will not experience it. Despite the fact that death is the great inevitability, few of us have gained the wisdom to know when to say, “it is time.”

We are afraid to talk about death. While a few are speaking out against the practice, almost everyone else seems to have bought into the idea of “life must be prolonged at all costs.”

By so doing, we have turned what is both a sad time, as we lose those we love, and a holy time, as we release them into the fullness of the presence of love, into a circus of IV’s, tubes, isolation, often nightmarish expenses, and fear.

A pastoral response to Charlie Gard’s parents

To return to Charlie Gard’s parents: I admit I don’t know what I would have been saying to them were I their pastor at the time he was born.

Hopefully, I would have spent far more time listening than talking. Ideally, I would have provided these grieving people a safe spot to speak of their agony, their “how could God let this happen” questions, their anger, their sense of helplessness, their love.

Somewhere in there, I would like to think that I helped them to come to terms with the necessity of letting Charlie go. All parents at some point have to let their children go–but most have the privilege of doing so as they enter adulthood.

Charlie’s release comes too soon, as it does for any parent who has gone through the agonies of seeing a child die or experienced a stillborn. Nothing can get us ready for this kind of pain.

No, God didn’t “need another angel.”

But this is life. If we want to live without pain, we must never be born.

Life always hurts. Death always saddens. But we make it ever so much worse by denying that death is inevitable. It is. For all of us.

None of us knows for sure what we will face after this physical life ends. But for those of us who look to Jesus as the one who shows us the fullness of God’s love, we see hope. In our sorrow, as we let our loved ones go, we can envision with them what it would be like to experience absolute love, a place with no fear, no sadness.

Let us never pretend that death doesn’t hurt, or that it does not often come too soon. May we never say, “God needed another angel in heaven” to justify a child’s death. Just writing the words infuriates me.

But let us also learn to embrace death as normal and as necessary. Until the time comes when each of us can have an ordinary death, let us hold our lives with grateful hands, savor each breath offered to us and love with all the boldness possible.

 Christy Thomas blogs at Patheos.

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