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  • Writer's pictureJody Glynn Patrick

A child dies ... but can they "live" on?

Updated: Nov 29, 2020

Many years ago, a mother and father opted to take their critically ill child home from Children’s Memorial Hospital, Chicago, so that she could die at home surrounded by family rather than medical staff. Let’s call her “Alice,” a child three years old with terminal cancer. Her oncologist had exhausted all known medical treatments and available clinical trials — and her body’s reserves. Her parents’ desire now was to help her die as easily and painlessly as possible.

In the way of many little oncology patients I met when managing the Chicago Ronald McDonald House, this little girl was precocious as well as precious. When asked her name, Alice recited her full name, adding “daughter of” and then she named her parents and offered her full address. She was special, and all who knew her realized that.

A few weeks earlier, a little playmate barely older than Alice had died. Their treatment cycles had lined up during the previous year, and so they had chemo together every 21 days. She had spiraled downhill very quickly at the same time he did, though of course, she was never told he died.

Alice was released from the hospital with an oxygen mask and morphine pump. A couple weeks later, her parents presented her with a new baby sister – she’d been most anxiously awaiting the birth of this child. It was all Alice had talked about for months. The parents were immensely grateful that she lived long enough to realize this one dream of becoming a big sister.

The decision not to resuscitate Alice was not made lightly. The parents discussed it with their doctor, their Rabbi, repeatedly with each other, and numerous times with me, in my role as friend and ongoing grief counselor. My family actually lived at the Ronald McDonald House and were close to this family, our children were playmates. There was little we didn’t discuss during regular phone conversations. They had not checked out of my life; they had only left The House.

Life went on for awhile much as we all hoped.  Off chemo, Alice felt better and even regained a little strength. Though sleep deprived and greatly stressed, the parents continued to appreciate such small blessings and they tried to establish a more normal routine of sorts, so the father could continue working and carrying the family’s health insurance benefits.

DNR: Decision vs. Instinct

Predictably, one day Alice slipped away in her mother’s arms while her father was away at work… and against all agreements, the mother frantically resuscitated her. A couple days later, the daughter “died” in her father’s care, while the mother was grocery shopping. He, too, resuscitated her.

Both parents questioned themselves and perhaps even each other; their distress naturally grew as their daughter lost ground and her pain increased as the cancer continued to progress. This was not a life any parent wants for a child, and the stress of deciding in a second’s blink whether to let her go or “save” her was taking a great emotional toll.

Alice died again in her mother’s arm, while her mother rocked and sang to her one afternoon. Again, her mother removed the oxygen mask and resuscitated her. This time, however, Alice began to cry. The mother asked her where she hurt, ready to administer morphine via the pump already threaded into her little artery. “I’m crying for you and daddy because you are going to miss me so much,” Alice said. “But it’s okay, Mommy,” Alice whispered. “Neil is waiting for me. He says it’s time to play with him now.”

Alice did not die immediately, even after Dad rushed home to be with them. Later (perhaps that night, if my memory serves me correctly all these years later) the mother was in another room when she overheard her husband’s sobs as he discovered that their daughter – the proudest big sister in the world — had figuratively and peacefully wandered off to join her little friend Neil on that promised playground.

What does it all mean?

In the aftermath of Alice’s death and burial, I was so taken aback by the stories of the resuscitations and messages that, like the parents, I hardly knew what to think or feel or believe. But we all hoped the same thing – that Alice’s little soul could escape our grasp of death’s boundaries.

I’m older now; wiser and even more experienced in the mysteries of death messages and my own Christian faith and understanding of God. I know what the message means to me, now as a bereaved mother myself, following my son’s death years later.

Near-death studies have revealed that before dying, many people see loved ones who have already died, as if they have been sent to help them “cross over”. Christians oftentimes report seeing the visage of Christ. Some people report seeing a beloved pet that has preceded them in death. This child saw a former playmate. Alice was the first child I ever knew to pre-grieve their parent’s suffering or feelings of loss, or perhaps she was just the first with the skills to communicate that to a parent. But it was not the last time I witnessed such a reversal of roles. Nor was it the last time that I had first-hand knowledge or experience with a dying child who tried to help a parent cope.

If we do not get in our own way, with all of the emotional and intellectual baggage that we carry with us, we all might draw at least a little comfort from her words, too. They don’t have to inspire a personal transformation or belief system. Maybe they can just be today what they were then: a gift of love from a precocious and precious child.

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