For nine years now, March 21 has been designated World Down Syndrome Day, as it signifies the triplication of the twenty-first chromosome. And October’s Down Syndrome Awareness Month will be the thirtieth since the event was recognized by former American president Ronald Reagan.
Leticia Velasquez
For pro-lifers, these occasions are tinged with sadness, especially given the new availability of non-invasive prenatal blood test screening for Down’s syndrome and other chromosomal anomalies, as early as 11 weeks’ gestation. I learned more by sitting down at Toronto’s fourth annual Dynamic Women of Faith event with advocate Leticia Velasquez, a co-foundress of KIDS (Keep Infants with Down Syndrome) with a background in social work and teaching.
In the U.S. and the U.K., 92 per cent of unborn children known to have Down’s syndrome are aborted – but until now, only a small number of mothers have been tested. The new impetus is for universal screening. “This test will be giving women the diagnosis before they are maybe even announcing their pregnancy, before they’re feeling the baby move, before they’re really showing, so they will be more distant from the child, and more susceptible to negative comments,” says Velasquez. In 2007, American disability rights advocates secured bipartisan legislation so that parents faced with adverse prenatal diagnoses receive positive information about their children’s prognoses, support groups, and the adoption option. Meanwhile, Ontario coolly lists resources at www.prenatalscreeningontario.ca while nudging parents about the availability of abortion at 17 to 23 weeks; the clear bottom line is financial.
Velasquez wants social recognition for “genetic diversity.” The link between Down’s syndrome and Alzheimer’s disease could yield clues for the treatment of both. And because people with Down’s syndrome are rarely susceptible to cancer, current trisomy 21 research offers hope for future cancer treatment for others. Meanwhile, people with Down’s syndrome are uplifting their families and communities: “I’ve never found a culture that couldn’t use more joy,” Velasquez says. “I’m Type A, so I needed this!”
Velasquez remembers receiving the news about her little Christina, now 11, directly from Our Lord Himself during Sunday Mass, when she was four months pregnant. “You’re going to have a child with Down’s syndrome … I want you to receive this child as a gift from My hand, when you receive Me.” She answered, “Yes, Lord, as long as you bring my husband along for the ride.”
Spouses frequently come to acceptance at different rates. Special needs diagnoses may be harder on fathers, who don’t have the bond of pregnancy. Ultimately, Velasquez watched her daughter become the apple of Francisco’s eye. Her book contains a counterpoint story from molecular microbiologist Dr. Gerard Nadal, who confronted his wife Regina’s denial. Her “reflexive self-blame” brought their marriage nearly to its breaking point – until both parents learned about authentic spousal love through the gift of their child. In the end, love won. “What marriage couldn’t use more sacrifice and love?” asks Velasquez.
Despite the interior voice that had spoken to her, Velasquez herself struggled with uncertainty. “I was very doubtful that God could do that to me, because I wasn’t special enough, I wasn’t holy enough, patient enough.” Seeing an 80-year-old mother patiently caring for a 40-year-old son, she thought that woman must be a saint. Except that the woman wouldn’t have been a saint when her child was born – she’d grown into it only by accepting God’s call and becoming more giving. “Now I feel blessed, I feel chosen; ‘why me?’ becomes ‘why not me?’”
Velasquez’ compassion extends to those parents who “bought the lie” that abortion would be in the best interest of their special needs children – and are filled with regret when they see the reality of children with the same diagnoses who are thriving. “A doctor can tell you all the negatives, but a doctor usually cannot tell you all the positives.” There’s no substitute for personal connection with mentoring families who can offer support and reminders that children are not their diagnoses. She wants special parents of unborn and newborn children, biological or adoptive, to know that they’re not alone.
“There (are) some trials involved. It’s a little bit more labour intensive to have a child with Down’s syndrome, more doctor’s visits, more close attention to their education, but the rewards are just amazing.” Healthier siblings may enjoy reinforcing the early intervention activities during the week, grow up to be considerate and generous, and frequently discern careers serving people with special needs. Velasquez, her husband, and her other children “are all becoming people that look into the soul rather than people judging by the shoes someone’s wearing or their car.” A survey by Dr. Brian Skotco found that, far from the perception that they are inevitably “suffering,” 99 per cent of adults with Down’s syndrome were happy.
“If God calls you to either work with these children or give birth to one of them, He will give you the grace of your station in life, the grace to deal with the challenges and the grace to see the beauty also.” Special needs children, says a colleague of Velasquez, are “teachers of our souls.” Velasquez explains: “Sometimes our best qualities are brought out through … others asking things of us, and that’s a good thing.”
Velasquez has seen Christina relate directly to the Lord, without words. Maybe special needs children “have the purity of heart to see what we can’t see, and maybe they’re here to teach us. Instead of how many more points we score on the IQ test, we could look at who’s having a better relationship with their fellow man and who understands God more.”
