Love: It defies measure

Imagine my surprise and delight when I received this story by Eric Fischer, dad to Segev, 15, in Israel. Many of you know Eric as the author of I am a broken man/You can't break me, a personal blog that Eric recently closed. Eric was born in Holland and has lived in many places. He's trained in traditional Chinese medicine and shiatsu and is an intuitive bodywork therapist. Thank you Eric for this important piece! Louise

Love: It defies measure
By Eric Fischer

I have to wonder at the audacity with which we are judged by others. 

Of course it happens to us each day and we may even be guilty of it. But nowhere is it more alarming than when we feel our children’s lives deemed unworthy because they are severely disabled. 

As a parent providing round-the-clock care for my son for 15 years, there are many constants in what has become our tiny, hermit-like life. Unfortunately, judgment is one of them.

It may come in the form of "What is the point?" when discussing the care of my son. "Isn’t he suffering?" is asked, sometimes in tandem to suggest that I've had no reason to be taking care of him all these years. “You have no life," is the nail in the coffin.

It seems incomprehensible, even to those well-intentioned, that my life providing 90 plus hours of care to my son each week is as fulfilling as it is difficult. That in the process of this caring there is a place for personal growth: an opportunity to experience a connectedness at the deepest level of our humility, an opportunity to define our humanity.

Each day my son has countless seizures and multiple respiratory therapy sessions. He must be fed and toileted and given a large number of medications. Surgeries have left him scarred and debilitated as his paralyzed body slowly collapses in on itself.

Strangely, the practical difficulties this presents don't disturb me nearly as much as the ignorance expressed by people who feel the need to project negativity on our lives. This includes doctors who counsel "You should think about having another child, don’t bother with this one,” to bioethicists who maintain that a sick child, if also disabled, doesn't possess a life worth living.

For years I remained calm when these comments were made. After all, we're all mature adults, simply discussing matters dispassionately, aren’t we?

I tried to convince whoever I was speaking with by gently pointing out the good moments in our life. I never invoked the "sanctity of life" dictum, so frowned upon by academics. In The Netherlands they've already found a way around the "sanctity of life" argument: the bioethics of utilitarianism hold sway and, without a public referendum, the term "unbearable suffering" has become the catch-all to justify doctors encouraging parents to agree to "assisted dying" of newborn disabled children.

But this view is based on more than one omission. We are human beings, still caught in a process of development and indeed, in need of development. As evolving beings we need to progress in some of our most lofty virtues, such as caring for one another and the understanding it brings of our inherent equality as humans. The ethics behind discounting the worth of a disabled, ill child suggests that we are only equal when we are "the same."

I no longer attempt to defend my position in these discussions. Instead, to those who judge my son's life as meritless I say: "Try it." Raise an extremely physically and mentally compromised child and then, and only then, tell me what you think. You can't express opinions with deep, life-and-death ramifications when you lack basic knowledge of the subject.

Of course most people won't have the opportunity to try this kind of "extreme parenting." So the next best thing, for those who want to develop an informed opinion, is to speak to parents who are raising, or have raised, these children. Yes, speak even to the parents who have lost their child. Ask them about their experience and I dare you to find someone who weighs in solely with regret. Ask them if it was worth it. Ask them if it contributed something real to their lives.

I don’t think many parents, when their child is given a strange look at the park, enter into a discussion of bioethics with the perpetrator. And I find everyday people who give “the look” are not usually in the least bit nefarious. 

However, I am worried about policy makers, bioethicists who sit on medical boards, like the ones in Great Britain, Belgium and Holland, or someone like Peter Singer in the United States. These people cloak their bias in reasonable-sounding arguments: as Horace called it, ecipimur specie rectie (We are deceived by the semblance of what is right).

Many people are dazzled by our information age's ability to express the human genome in a series of ones and zeroes in a computer. But we can't reduce our love of and care for a child to a number, to a quantity of human worth.

Caring night and day for a disabled person changes us. Allowing it to change us is an exceptional and worthy endeavour, especially in light of the fact that we naturally recoil from change. Change makes us uncertain, and parents willing to partake of this life are the very definition of courageous pioneers.

"Given the chance, would you do it again?" is a question asked of parents like me on forums and in news story comments. It's often used as a trump card to silence those who defend the value of children like ours.

Would I do it again, if given the choice? Allow my life to be turned upside down and inside out? To lose financial stability, any semblance of certainty in life, and comfort? To see aches and pains and chronic fatigue turn to ailments? To watch others continue their lives with social connections, vacations and friends?

Would I choose to suffer the heartache of those moments when my son’s life seemed to slip away, only to marvel and be filled with gratitude as he bounced back, again and again? And until when? Would I choose to share in those simple moments of connection, when life is reduced to its most valuable elements?

Yes. In a heartbeat, I would.