Bargaining: Possible Outcomes, Part 1
After hearing the doctors’ recital of possible outcomes (in “Just Like Any Other Baby,” Mar. 15), I remember reviewing them in my mind and gauging them one by one. I looked at what might be the effects on our family life. And I thought about what I could accept with what degree of ease—and what I could not accept.
Obviously, the outcome was not up to me and would manifest itself whether I could accept it or not. That’s why I think of these reflections as described in Kübler-Ross’s stages of grief as bargaining. “Okay, I can deal with this, but that—absolutely not.” I did not offer God any deals on what I would do for such and such an outcome. This was more of a self-assessment of resiliency. But it felt like a bargaining process. It seems a natural way to look ahead after a big reality check: to examine what’s involved with each scenario and how well am I equipped to handle it.
Possible outcomes
Part 1:
Blind
Can’t walk or talk
Part 2:
Cerebral palsy
Developmental delays
Part 3:
Learning disabilities
“Autistic-like behavior”
Mental retardation
“Theo might be blind.” This didn’t seem likely to the doctors, so I didn’t give it as much thought. Also, it became clear fairly soon that Theo could see. Well, if he were blind, that would be a lot to learn about. There would be school for the blind, learning Braille, and finding out about all the accommodations needed for adult life. I didn’t doubt that I could cope with a learning process like that.
I didn’t think specifically about how sad that would be for Theo to be without sight. Any of the outcomes would be sad. The whole thing was sad. Our baby had been born healthy and now might have any number of big problems. I remember this being described as the loss of a dream. The image I’d had of the unknown baby joining our lives—boy or girl, because we didn’t know ahead—was changed from endless possibilities to the certainty of issues—which we couldn’t know yet! But a sort of ghost image of a healthy baby persisted, along with the ghost of the girl baby I’d been persuaded I would have. These ghostlike babies hovered on the edges of my consciousness for days after Theo’s birth before fading.
“He might be unable to walk or talk.” I took these possibilities separately. Not being able to walk: Well, that meant a wheelchair and related accommodations needed for transportation, self-care, and so on. At that time, Theo’s father was walking with a cane, using a wheelchair only for ease in getting through airports. He expected that later in life he would need a wheelchair more and more, and that’s what has happened.
This reflection brought up the thought that our family of three would now include two people with disabilities, which left me, not an athletic or particularly high-energy person, as the “normal” one. Which was “more than I bargained for,” perhaps? Actually, we had known and discussed the risks before trying to have a child. There’s no rule in life guaranteeing that if you have one person in a family with problems that everybody else would be fine. We had heard of partners, for example, who both contracted cancer and died within months of each other. “These things happen, we don’t know why . . .,” as the Catholic sister had told me at the hospital.
Because of my age, we thought of problems related to that the most; namely, the increased risk of Down syndrome. We asked ourselves under what circumstances, if any, we would terminate a pregnancy. In talking about this, the emotional life came to the fore—the ability to feel pleasure in life, to relate at least in some way to others. I liked what Mother Teresa had said, that children are “born to love and to be loved.” We knew the inspiring story of Helen Keller, who had lived a positive life with her teacher and companion Annie Sullivan, in spite of being both deaf and blind.
By this standard of some degree of awareness and ability to enjoy life, the possible outcomes, had we known them before birth, would not have applied as a reason to end the pregnancy. That meant that we had already decided that we would accept any and all other issues in becoming parents.
My husband, though theoretically prepared, of course was struck forcibly by the reality of now being a father with disabilities to a son with disabilities. He reacted with anger and initial despair; I moved into the bargaining phase, turning over each issue one by one.
“Might be unable to talk”: People who can’t talk may still be able to have relationships, emotional connections, and some way of communicating. But I didn’t dwell much on this possibility, unknown territory for me. Theo had no birth defects or obvious physical issues, so an inability to talk veered toward the cognitive arena, and I veered right away from that.
Next: “You’re Theo’s Problem”: How to Civilize a Young Man
Next related post: Bargaining, Part 2