Sunday, August 4, 2013

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.


What a great piece! Thanks Louise. The ultimate question is "Would you do it again?", "Do you regret?"

Part of my published research involved asking 332 parents of children with trisomy 13 or 18, conditions which cause early death or survival with severe disability questions like "What is the overall effect of the child's life" and "If you were faced with a prenatal dx, would you continue the pregnancy?" Despite the parents admission to the effort and financial challenges of caring for their child, they overwhelmingly responded that the overall effect was positive and they would do it all again.

These conditions were first identified 60 years ago, and nobody had ever asked the parents their perspective. The literature is filled with negative presumptions and guidelines regarding the "unacceptable morbidity" of the conditions and recommendations to allow natural death. One author, (From the Netherlands) even wrote that it was not enough to let these children die- perhaps a proactive approach to causing their death should be considered. (The Netherlands developed the Groningen Protocol years later which permits active euthanasia for certain infants.)

I think we are at a critical time in humankind. We will soon have the ability to feasibly offer whole genome prenatal testing for hundred of genetic conditions, withholding fluids and nutrition from disabled children is permitted and gaining acceptance and legalized euthanasia seems likely. It is imperative to really explore and understand the value of fragile lives from those who love them and not make assumptions and risk losing special lives that might just be the greatest teachers for all that really matters.

Thank you Erik!

Beautiful writing. Beautiful people.

I want to express gratitude to the author Eric for writing such a beautiful piece and sharing it with us Bloom readers.

It takes great skill and talent to put into words sentiments that are only vaguely formed in our own heads. Thank you for that.

Beautifully written, Eric. It reminds me of the article I recently read in the Atlantic that talks about the results of a study showing that meaning in life has a higher correlation with good Heath than even happiness (as we traditionally define it).

Wonderful article. Thank you.

Thank you for sharing this beautifully written article. Eric Fischer perfectly and poignantly expresses what I feel about parenting my son. I will share this as widely as I can, thank you!

Wonderfully written. So many are quick to make judgments and decisions about our children before meeting them yet alone living a moment in our shoes. My special needs son is worth every ounce of frustration, fear, anxiety, gratitude, excitement, and most of all love.

You said it all; you said it so regrets! It was a wonderful statement about our lives, Eric!

I'm glad this has resonated and appreciate the comments here as well as on the Pediatric cannabis group, the Ohtahara group and the severely mentally and physically compromised children group (all on facebook). While new posts are not planned I have decided to leave access to my blog and links, for those interested.

It amazes me the more I read from BLOOM how all of us parents have the same feelings and go through such similar experiences. It's really inspiring to read because it gives me such a feeling of connection when so often I feel so alone in our experience. I can't thank you Erik and Louise for sharing this thoughtful piece.

Like Eric I too worry about policy makers and bioethicists who dominate theoretical discourse about the delivery and future of health care. I take strong exception to much of what is written. In fact some of the ideas as Eric points out couched in reasonable language is quite frightening. Think utilitarian philosophers like Julian Savulescu and Dominic Wilkinson. But there are good bioethicists doing important work. Anita Silvers, Rebecca Garden, Leslie Francis, and even myself. What we really need are voices of opposition from outside the academic community such as what was written here.

I am not a parent of a child with disabilities, but my brother was profoundly physically & mentally handicapped. He was only with us for 10 years, but what a blessing he was! I would not be the person I am today without Todd having been in my life! He was the one individual who had the most influence on me. I have been a teacher for children with severe/profound disabilities since 1986 & couldn't imagine spending my life doing anything else. I have been told more than once by people from all areas of my life (including my boss!) that they don't know how I do what I do every day & that they certainly could not do it! The intrinsic rewards that I receive by working with & loving these children is more than I can explain! I am doing this by choice...most parents did not choose to have their lives revolve around a child with disabilities. May God bless the parents who are given this unexpected gift!