Those Who Walk in the Borderlands

I read with some interest a few weeks ago  a newspaper article about the survival rates of micro preemies. It’s the sort of thing I follow, given Gabriel’s birth at 25 weeks, and the decisions we made for him.

I don’t often have the 3 am angst now. Sometimes. The medical files live in a drawer, a large envelope filled with notes and jargon. So much emotion reduced to clinical-ese. I haven’t pulled them out in years now.

And yet.

Adulthood is binary. The choices we are given to make, the decisions, the best guesses, we make them and we cannot make other ones. In the middle of life and death, in the mine field that ethicist muse about and politicians pontificate on, there are real families. Real couples. Who try and weigh everything they know, believe, value and hold to be good and right and true. And they do the best they can with what they have.

You go into that place, those rooms, those situations with what you have. With whatever moral framework you have developed, with what life lessons you have acquired, with what ever you have managed to cobble together as some sort of truth framework.

And all of it falls short. When you are given the power of life and death and all you can think is that you didn’t ever want this power and you want to go back to the innocence that you had, when all you can think is that you do not want to be there, making these decisions. When all you know is that you would trade your life for your child’s in a heart beat, and that decision would be easier. There are no good choices in those places. This is not a place of right and wrong, good and bad.

You do the best you can. And it will never be good enough.

In the middle of the article was this quote:

The other extreme, he says, are parents “who say, ‘we want a perfect baby … we cannot accept these potential complications. We don’t want any resuscitative efforts. We’re OK with just compassionate care.’ “

Oh, Doctor Victor Han, Canada Research Chair in fetal and maternal health and chair of the division of neonatal-peri-natal medicine at Western University in London, Ont.

Oh specialist with so many letters behind your name. Oh specialist who is filled with learning and devoid of knowledge.

Let me tell you, oh learned doctor, what I wanted. I wanted a little boy who would be five now, and in kindergarten. I wanted a little boy who would play soccer in the field across from my house. I didn’t care if he was ever any good at it, but I wanted him to be able to run and shout, to feel the sun on his skin. I wanted a little boy I could read stories to, a little boy who could dig in the garden. I didn’t care if he had to use canes, wear glasses, needed speech therapy. I cared that he could feel happiness and know love.

I cared that he would never walk and may well be in constant pain. I cared that he would never leave a hospital, that I would never be able to bring him home. I cared that he would never be able to feed himself, perform his own personal hygiene. I cared that he would never go to school, never hold a book.

You see, you say in the article that you don’t know what the answers are. You say that it’s a grey area. You refer to borderlands.

And yet, one of your kin walked into our hospital room. 2 am Sunday December 9th. And in that grey area, in those borderlands, you told us that we had to make a choice. There was just us in that room. Who we were, what we valued. What we thought life was and why it mattered. I guess, in that place, at that time you asked us to define perfection. What we could live with and what we couldn’t live with out.

What you spill ink on, we spilled tears for. We didn’t write an academic paper, we signed orders and consents and then an agreement to cremate our son. With our hearts breaking, ill equipped and broken. We made what choices we could with what we had.

Call the decision whatever you want in your academic lectures and papers. Tell others that we pursued perfection and make us out to be heartless monsters. Take the grey areas and make them black and white.

But spare some kindness for those who have walked in the border lands and had to leave someone there.

You can add up the parts
but you won’t have the sum
You can strike up the march,
there is no drum
Anthem, Leonard Cohen

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9 Responses to Those Who Walk in the Borderlands

  1. a says:

    What an absurd statement. Devoid of knowledge, indeed.

  2. March is for daffodils says:

    Oh, that is infuriating. I know so many people now who had to make that choice – that terrible, awful, worst of all choices choice – and it sickens me to think that people will read this article and imagine the parents who just want perfect babies…I’m an academic, too, and I don’t think that this type of language, this way of describing – from a distance, from a place of superiority, with a total lack of compassion – should be allowed or accepted anywhere.

  3. Erica says:

    Thank you for this response. I guess it’s not impossible that those parents, the ones who insist on perfection, exist somewhere, but I have a hard time believing in them.

    I still remember that team of doctors in my hospital room. I remember how hard it was to set aside my own desire to hang on and think of what would be best for this new little person that I loved so much. We wanted more than bodily survival for him, but perfection never entered into it.

  4. Julie says:

    As a NICU nurse for the last eight years, I have never met parents who have chosen palliative care because they wanted a perfect baby. They ALL had their perfect baby already. We do the best we can with what we are given. Palliative care is a choice made from a place of deep, unadulterated love. And that is itself some kind of perfection.

  5. loribeth says:

    “There are no good choices.” Isn’t that the sad truth. 🙁

  6. HMC says:

    Goodness–this post resonated with me. We, too, had to make a decision about whether to fight to keep our daughter alive. While I was in labor, we prayed that we would make the right choice, and in the end, it was clear that her heart was not strong enough. So we let her die in our arms as we sang to her and kissed her tiny, precious head.

    A few days before her funeral, my mother-in-law took me shopping for a black to dress to wear, because I refused to wear maternity clothes, and nothing else fit. While we were at the mall, a bus pulled up, and some developmentally disabled adults began to unload. My mother-in-law–in a moment I’ve still not completely forgiven her for–said to me, “My friends and I are all so glad that you don’t have to raise a handicapped child.”

    She so didn’t get it: I would have taken my daughter in any way, shape, or form. Handicapped–whole–perfect–imperfect: none of mattered to me then or now. What mattered to me was that we make the right choice for our child, and in the end, we decided that it would likely cause her pain that would be unlikely to result in a positive outcome. She would suffer. And she would likely die anyway. That was the bottom line.

    It’s a terrible decision to make, and not one that you ever want to have to make, and one that you hope no one else has to make.

  7. Christa says:

    I’ve read your blog for a long while because you are a good writer, not that I know you or had been through this. But less than a month ago, we were there too in that hospital room having to make that decision. And for me, it was hard to believe the medical facts, because our baby looked perfect to me — despite obvious anomalies, a number of tests, and lots of medical data. But we had to weigh the data, and make what we though was the best decision for him, appearances of perfection to the contrary, to let him go. And god that hurts; that our child was not stolen from us by death, but that we had to walk calmly towards it. Walk away from surgeries, possible interventions. Many things that could be done, maybe. So no, not black and white at all.

  8. He sounds like a complete ass. There are too many of them around. YOU know the truth of your situation, as does every parent who has faced similar situations (I have). Our babies ARE perfect, as Julie says.

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