Friday, May 18, 2007

"Easier to cherish than to describe"

Jerome Lejeune is being considered for Sainthood. As a mom of a child with Down syndrome, I have known about him forever. But I never knew enough, and I am humbled and deeply moved by what I have learned today.

Lejeune's scientific and spiritual fame centres on his 40-year commitment to finding a cure for Down's syndrome (for pedantic reasons now known as "Down syndrome" in North America and elsewhere). At the very beginning of his medical career in the 1950s he found himself drawn to the young, mentally handicapped children, so often segregated in institutions and denied treatment which could have relieved associated health problems. He also felt deeply for the parents who learned that they had given birth to a "Mongol" child ("Mongolian idiocy" was the cruel technical term for the condition) and who fell under suspicion of breeding racial degeneracy. In earlier decades Down's sufferers had been targets of the eugenics movement.

Fellow feeling for these innocent outcasts turned the young Parisian doctor into a research scientist, his mind and heart set on solving the mystery of their condition and relieving their suffering. He would not accept that his profession could turn its back on one whole group of people.

He lived to see the day that the medical community would turn it's back. His humanity was most evident in his words about our children.

"With their slightly slanting eyes, their little nose in a round face and their unfinished features, trisomic children are more child-like than other children. All children have short hands and short fingers; theirs are shorter. Their entire anatomy is more rounded, without any asperities or stiffness. Their ligaments, their muscles, are so supple that it adds a tender languor to their way of being. And this sweetness extends to their character: they are communicative and affectionate, they have a special charm which is easier to cherish than to describe. This is not to say that Trisomy 21 is a desirable condition. It is an implacable disease which deprives the child of that most precious gift handed down to us through genetic heredity: the full power of rational thought. This combination of a tragic chromosomic error and a naturally endearing nature, immediately shows what medicine is all about: hatred of disease and love of the diseased."

How could we go from this to where we are now? How can we in the DS community NOT follow his lead and fight loudly and publicly for our children?

"The patients are waiting for me, I have to find the answer."

However, although he laboured to the last weeks of his life -- exploring the use of folate therapy, for example -- he died in April 1994 without achieving his mission, and feeling that he was "abandoning them".

When my daughter was born almost 9 years ago with DS, I began to see the truth of prenatal diagnosis around me. So many babies were dying. So many families were being told that this blessing was a curse. I was shushed and blacklisted for screaming this from every rooftop, DS support sites did not want this dark discussion brought to light. It was not a good conversation piece, it would scare new parents. I learned to be quiet or risk banning everywhere I went. It is with some pride that I WAS banned by several sites who not only gave newly pregnant moms advice on how and when to abort, but almost pushed them over the edge with one-sided advice on the value of our children's lives. If anyone doubts that the culture of death is alive and well, I would implore you to do a search on "prenatal testing bulletin board termination for medical reasons". It is astonishing how far we have come. In a way, I am almost glad the good Doctor didn't live to see this day. In the 90's the abortion rate was near 90%. What do you suppose it is today?

My child is almost 9 now. There are fewer and fewer of her peers in the world with DS. Someday, we will come to the awful realization that we did not speak up soon enough. It is comforting to know that Dr. LeJeune started speaking up LONG before I did. It is affirming to know that my own little voice mirrors his. It is sad to know that his voice is still now, when we need it more than ever.

In our race to find the perfect child, we are throwing away the 2nd best gift God ever gave us. Having a child with DS teaches you about what really matters in the world. I am sad for the world, that they will never know until it is too late, what they have so easily discarded. In my mind, I can see the hundreds of thousands of broken little bodies as they cross through Heaven's Gate, running into his outstretched arms, accepted and loved for who they are. Finally.

1 comment:

Tammy and Parker said...

Such a great post. May Parker and I link to you?