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The Death of a Child and Lessons for a Well-Lived Life
Finding meaning through love, commitment and hardship.
Posted October 14, 2019 Reviewed by Kaja Perina
I did not know the child or his mother, father or brother. I did attend his memorial service. I knew about the boy’s life-long illness from my wife, who is a colleague of the boy’s mother. I’ll call the boy Zack. I will call his mother, father and brother Jennifer, Andrew and Mark. Zack was born with a congenital condition that would cause severe developmental delays. He would be unable to talk his entire life.
It was never clear just how long he would live. There was a one in five chance that Zack could die before the age of two. It was also possible for people with Zack’s condition to live until their 40s. But they could never know. In Jennifer’s words:
We always knew that Zack ‘might’ die, that at the flick of a switch his medical status could change and he could die. He could live until he was 40 or he could pass away unexpectedly within a week. And for sure that uncertainty contributed to our approach to life with Jake and our family.
However, when he was nine years old, Zack’s health took a turn for the worse. In Andrew’s words,
At around 4:30 am on the first night he was inpatient a violet rash like color spread across the right side of Zack’s face. The rash spread rapidly and darkened in color. Within five hours Zack was rushed to the ICU and we were made aware that the ICU doctors had no idea what was happening to our son. By 4pm, Zack was near unrecognizable with swollen, bloated right side of his face including his lips, nose, cheeks and eye. His skin had turned so purple that it actually appeared black.
There can be few things more horrible for a parent than the prospect of a child’s inevitable death – except, of course, for the death of that child. And as Jennifer noted, after Zack’s health status changed, “the window of time continued to shorten over the last 2 years”.
Words with Genuine Meaning
In the Zack’s memorial service, Jennifer told a story of the physician who, when Zack developed critical complications of his condition at age 9, sat down with her and said something like:
Yes. Someday, Zack will die. But that day is not today. And right now, Zack needs his mom.
And that day is not today. This is a profound statement, as it alerts us that despite the certainty and uncertainties of the future, there is the present moment – a moment that has much to offer, both good and bad, and that it is our job, in the present moment, to acknowledge the bad while cultivating the good. And Zack’s joy in the moment – in this moment – is good.
Of course, Jennifer and her husband rose to the challenge of caring for Zack. Zack’s father – Andrew -- quit his job and cared for Zack full time. Andrew took Zack to his 11 physical appointments per week. The family sold their dream home and moved to a location where Zack could have the services he needed. And of course, they did not simply give up their dream home; they had to give up the dream of the life before them. Their life could never match the dream that came with Zack’s birth. The hardship, the sacrifice, and pain was great.
Nonetheless, Jennifer and Andrew devoted their lives to caring for Zack for the 11 years. They were committed to ensuring that Zack’s life was a quality one. When Zack turned 9, his health took a turn for the worse. At this point, faced with the prospect that Zack’s life would not be a long one, Jennifer and Andrew were forced to face the question of how they would address the impossible decisions that would come as Zack’s body began its inevitable decline.
Over the course of 11 years, Jennifer and Andrew provided Zack with the opportunity for a well-lived life. This is remarkable. In addition, although I would not dare to suggest that they have lived a “happy” life in the conventional sense of that term, it is clear to me that Jennifer and Andrew’s past 11 years have been a life well-lived.
A Life Well-Lived
As long as Zack could have quality of life – as long as he was able to experience joy – they would continue with the medical treatments necessary to keep Zack alive. In the last two years of his life, Zack came close to death several times. Organs would begin to fail. But the best physicians in the world were able to turn him around each time.
And each time, as Zack came back, Jennifer and Andrew would experience Zack’s joy – the uncontrollable laughter that he experienced when swimming. Alternating states of hypnotic calm and excitement that came over him when he heard his favorite music.
Zack had learned a handful of words over his life. One of them was “good”. And when things were good, he would say, “good, good, good”. Or he would say that his day was “epic”. He could communicate using a communication board. And so, during the summer, he would joke with his caregivers – “Let’s go out and sled – Just kidding!” Or, on a playdate, reach out to hold the hand of the boy in the wheelchair next to him.
So, there was joy. Such joys might be simple ones, but they are joys nonetheless. Perhaps because they were uninhibited, Zack’s simple joys were more deeply felt than the those of healthy children or sophisticated adults. In this way, through difficulty and pain, we can say that Zack’s life was nonetheless a life well-lived.
Caring for a Sick Child
But it is not Zack’s painful but well-lived life on which I wish to focus. No—it is the well-lived life of Zack's parents and family.
There are several classes of reactions that we tend to have when we think about pains of parents who face the task of nurturing sick children. When we observe parents like Jennifer and Andrew – parents who devote their lives to their sick children – we tend to look at them with admiration. We often idealize them – we see them as selfless or saint-like beings who sacrifice their own lives for those of their children.
This form of idealization, I think, commits dual errors. First, it implies that there is a correct way to react to the sickness of a child. It implies that the ideal course of action for the parent of a sick child to be is a selfless hero. We might say, “she never complained”, “she did the right thing”, and so forth. This, of course, creates impossible standards for any parent to live up to. It suggests that somehow, if one cannot or is not able to put aside one’s pain for one’s child, that one is somehow less than ideal. This is unfair. The other error that this form of idealization makes is a kind of dismissing of the pain and suffering of the parent. The ideal that the ideal parent rises above the pain implies that it is possible and desirable for a parent to rise about such pain. This, I think, is also unfair.
The other reaction we have is just the opposite. Instead of idealizing the parent of a sick child, we pity that person. We think that the horrors that she or he is suffering must be unbearable. And while there must be deep truth in this, our pity communicates that such a life must be so bad as to not be worth living. And this, also, is unfair.
Three Other Lives Well-Lived
Idealization and pity are natural reactions as we observe parents endure what we find unimaginable. At this point, I must admit to a bit of idealization of my own. I must admit that I do idealize Jennifer and Andrew. But not because they rose to the occasion of caring for their son, although they did that. And not because they endured what I experience as unendurable, although they also did that.
I idealize Jennifer and Andrew because they have done something that I regard as rare and impossible. During the 11-years they spent caring for their son, it seems clear to me that Jennifer and Andrew also lived a good life. Their life was well-lived?
How could this be possible? It almost sounds as if I am saying that there was something good about Zack’s illness. No – I am not saying that. I don’t see good in Zack’s illness.
Jennifer and Andrew were able to live a good life because, through such suffering and pain, they were able to choose life. They were able to see that each moment that they had with Zack was a gift to be lived. They were able to see what most of us take a lifetime to learn – that it is love that defines a life.
Jennifer and Andrew always knew that Zack was going to die. This did not make anything easier, and certainly didn’t make anything easy. But they also knew that Zack wasn’t going to die today. And so, for each moment, as much as possible, Jennifer and Andrew chose to act out of life-affirming love. To choose to act out of love is to choose to give of oneself to the other (in this case, Zack and his brother Mark) – and not to sacrifice oneself or give up oneself to the other (although Jennifer and Andrew did more than their share of sacrifice).
And so, I am idealizing Jennifer and Andrew – but I want to do so without romanticizing their life. I am idealizing them because they are living an authentic life seeking to affirm life through deep hardship. Their authentic life has been one in which they have neither denied nor made a virtue of the loss, pain and suffering that they endured over the past 11 years. Instead, acknowledging and living through their pain and suffering, they nonetheless affirmed life by seeking joy and meaning through their capacity to love.
Jennifer and Andrew did right by their sons. They gave Zack a well-lived life as they continued to nurture – with a sea of loving assistance -- Zack’s brother, Mark. But they also show us, I think, that living well does not mean living without hardship and pain. Living well is hard. And while I do not wish Zack’s, Jennifer’s, Andrew’s and Mark’s life circumstances on anyone, I do wish that we can learn how to live the difficulties of our lives in and through love in the ways that they have modeled for us.
