It was the best…
Full of fun. Full of festivity. Full of friends, family, food and all sorts of just the right touches and treats in the creating of meaningful moments.
It was my son’s 24th birthday — and a grand one at that.
24 years ago, we found out halfway through our pregnancy that the babe had a specific congenital heart defect that when present in utero, 50% of the time, it indicates the child has Down syndrome.
A couple moments stood out to me from those initial, immediate, and sometimes shocking conversations. One was when the doctor asked us if we’d like to proceed with more testing. In response to me earnestly asking why, he said so that we can be prepared to have a baby with a disability. It struct me as odd at the time — not wrong nor any judgment, of course. But I can remember responding matter of factly back with exactly what I was thinking. “You said we have a 50% chance of having a kid with Down syndrome. I think God’s telling us we need to be prepared.”
Next was when the two doctors in the room looked to each other, not making any eye contact with us as of yet, when one soberly said, “Should we have the conversation with them now?” Then they turn to us, respectfully but bluntly asking if we would be interested in aborting our child. Again, no judgment; it just made no sense to us with a kid we had long started to love.
Somewhere amidst all this unanticipated development years ago I became newly aware of an oft used — and I believe misused — colloquialism. It was just something that got me thinking in a way I previously had not; that’s good for us at times. I speak of this whole idea of “quality of life,” the standard we perceive of health, comfort and happiness experienced by another.
For full comprehension purposes, the term “quality of life” originated in the 1920’s but gained prominence in the 60’s and 70’s, particularly in the U.S. after World War II. It became a common metric in medical and public health research, driven by growing awareness and the need to evaluate health outcomes by more than just the physical. It makes sense.
But my perception of misuse comes less from the metric’s value in public health research than in our sense of assessment capability. I feel like we think we are far more capable of discerning another’s quality of life than we actually are.
Let me be respectfully clear. I am not referencing a person whose life is only viable via artificial means. I also am sensitive to those whose perceived quality of life was at one so-called level and then drastically changes, perceived as incredibly negatively so. I can only imagine the effort and perseverance such takes. God be with persons in said circumstances.
My discomfort instead comes from when we look at another whose life is different than our own or different than what we believe is good and then we assess that their life is somehow lesser — “lesser” meaning less good or not so great or not as important or worthwhile as others. That’s why those doctors asked me immediately after diagnosis if we wished to abort; they perceived my son’s life as lesser.
All due respect to those doctors; many in the medical community became deeply valuable, precious and trusted resources during that time. But to see my son now — what they clearly couldn’t see then — and think his quality of life is somehow lesser is to not know my son. He works, cooks, cleans and brightens the days of many. He takes care of dogs, volunteers in the community, and passionately yells at the TV on college football Saturdays. He is humble, kind, faithful and loves people — many days better and more than me. In other words, at 24, he is thriving.
Thanks, no less, to the many who reached out to extend warm wishes to him on his birthday. He was so grateful!
It was a most wonderful — and always meaningful — day.
Respectfully…
AR
