A Philadelphia reader passes along this deeply moving essay by a Catholic mother of a Down syndrome child, responding to some vandals who stole photos of Down children from a website, and reposted them making fun of the kids and their condition. Excerpt:
This attack was also painful because of the callous lack of understanding of what these photos stand for. Accomplishments in this particular world are hard won. They represent hours of sleepless nights rocking babies who struggle to breathe during bouts of pneumonia and other respiratory infections. They represent long hospital stays, emergency room visits, and anxious hours spent in surgery waiting rooms. They represent days, months, and years of physical, occupational and speech therapy, conferences with school officials, and the effort to make others understand these children’s unique gifts. Even the simplest everyday activities can be a real triumph for children and parents. The amount of love, suffering, pain, and prayers that go into the moments captured in the posters is probably more than many people go through in a lifetime. These children overcome circumstances and adversities that would overwhelm most adults.
But after seeing the online ridicule of Down Syndrome children, I wonder whether the deepest sorrow that pierced Mary’s heart was not the physical suffering of her son, but the cruel taunts and mockery to which he was subjected. It must have been bewildering to her that his tormentors could not see that all the life and goodness, truth and beauty in her Son. Of course our children are not messiahs. But a Holy Cross Priest at Notre Dame reminded us last week that those of us who care for individuals with cognitive handicaps stand on holy ground. Knowing a child with Down Syndrome is like getting a small glimpse of the divine; original sin has been cleansed by baptism, and their souls are barely touched by actual sin. And that’s why we feel that when they are shown disrespect, something innocent and holy and sacred has been profaned.
A few years back, my friend Prof. Ginny Arbery wrote a beautiful tribute to her daughter Julia, who has Down syndrome. Excerpt:
Julia’s life soon began to bring out the excellences of others. She brought our little college community even closer together, a joy to the students and a prize to anyone who held her. Early Intervention trained us to stimulate areas of her brain by waking up facial muscles, working to get her to sit up or to crawl – a task she never mastered, scooting instead with her two hands and bottom.
I would go from teaching the Declaration of Independence and the Federalist Papers, to a large room uptown with five other mothers propping up their floppy babies. Nothing else has ever quite brought home the meaning of “all men are created equal endowed by their Creator with certain unalienable rights and among them are life, liberty, and the pursuit of happiness.”
We were all working for that fullest expression of life and happiness for our babies. I thought about the “prudent” mothers who had aborted their own children with Down syndrome. I grieved for those who, exercising their reproductive rights – a new appropriation of the older notion of liberty, which was rooted in duty – would never know the profound satisfaction of raising such a child.