A must-read letter: We made the right decision

As published in the Fargo Forum on 10/30/14

Eighteen months ago, we attempted an overnight getaway in Duluth before the birth of our third child – more than a month in advance of his due date. When we noted our baby seemed to be moving little in the port city, we went to a local hospital. After an ultrasound found our baby’s level of amniotic fluid unacceptably low, the physicians in Duluth recommended we deliver the baby there, right away. And so did we welcome Solomon James into the world.

But there were concerns. Our attending pediatrician noted immediately that our little Sol seemed to be having problems with his heart and kidneys, and that he had sustained a brain bleed in utero, the cause of which remains unknown.

Sol’s condition deteriorated quickly, one consequence of this being that we were not even allowed to hold our newborn as the nurses and physicians worked tirelessly to save him, filling him with tubes and needles, platelets and medicine. After Sol’s transfer to Children’s Hospital in Minneapolis, we watched helplessly as our child experienced increasing levels of organ failure. It was only a handful of days before the staff there were telling us that efforts to keep Sol alive were nothing short of heroic and that his death in the hospital would, unfortunately, come sooner rather than later. He wouldn’t be coming home.

The question was thus presented to us: Under what conditions do you want your child to die? Solomon obviously had no living will, and the decision was ours to make as parents. After hours of agonizing discussion, prayer and hand-holding as nights became days in our windowless hospital room, we decided to allow Sol to experience life not connected to catheters and cannulae and asked to hold and kiss him – knowing that such a request would hasten his now inevitable passing.

In allowing our son to experience a short life free of steroids, tubes and injections – to experience love and the warmth of a parent’s touch – we made the right decision.

The rightness of that decision then is why the proposed Measure 1 today is an abomination. It is entirely possible, if not likely, that if this measure passes, parents in such a situation – and their physicians – would be forced to consider the law before love and the needs and dignity of their very sick sons, daughters and patients; would be forced to wonder if their desire to respect life by allowing a child to die in the arms of a mother or father and without the interference of medical gear would be now at odds with a state constitution, which insists that life at any stage of development “must be recognized and protected” regardless of its conditions or quality.

So it is that those who insist on protecting life at all costs simultaneously disrespect the memory of our son and future parents’ efforts to love and honor the preciousness of the life they have been charged with guarding when that life no longer can be saved for any number of reasons. In insisting on life above all else, rather, Measure 1 would simultaneously prevent North Dakotans in a variety of situations from respecting and revering the lives of their dying loved ones – and possibly prolonging the misery of all parties involved. The cruelty of such an irony is almost unspeakable.

Please, friends, do not pass this measure. Don’t intentionally and self-consciously make the sacred, noble treatment of failing life legally suspect in a gray area such as ours where no living will applies and death is imminent but not immediate. Don’t further complicate the already intensely painful decisions North Dakota parents will have to make when and if their children fall ill. For we will all find that rather than cultivating a culture of life in the wake of such a measure, we will have instead inaugurated an era in which life has become objectified, and those of us thrust into such situations find ourselves alienated from our children and each other in our times of greatest need.

We can imagine nothing less holy than this.