Politics & Policy

Down with Love

Mother knows best the gifts of a child with special needs.

Leticia Velasquez is the editor of a new book, A Special Mother Is Born, which gathers the inspiring testimonies of parents who were given bad prenatal diagnoses, or found themselves unexpectedly the parents of a child with special needs. Many of them found themselves fighting for their child’s life, often against the advice of doctors. Velasquez talks about the book with National Review Online’s Kathryn Jean Lopez.

KATHRYN JEAN LOPEZ: The book is called “A Special Mother Is Born,” but isn’t the testimony of fathers as, if not even more, important?

LETICIA VELASQUEZ: I found it easier to gather testimonies from mothers, perhaps because it’s natural for mothers to share birth stories. In fact, I did not intend to include fathers’ stories until I came across former senator Rick Santorum’s article “Two Years Worth Every Tear” in the Philadelphia Inquirer. His testimony about his daughter Isabella Maria, born with Trisomy 18 against all the odds, was so captivating that I felt inspired to ask for permission to include it in my book. Soon afterward, I found stories from two other prominent fathers, Dr. Gerard Nadal, contributor to LifeNews, and Patrick Coffin, radio-show host at Catholic Answers. Their stories offer positive portrayals of fatherhood too seldom seen in the media.

LOPEZ: Do you see your book as important for marriages?

VELASQUEZ: Not all married couples will face a prenatal diagnosis of a special-needs baby, but it is certain that all marriages will face major challenges. Life sends us unexpected crises: infidelity, death of a parent, loss of a home or a job, addiction. Learning from the couples who dealt with potentially marriage-wrecking obstacles and emerged from the crisis stronger, more forgiving, and more loving is invaluable. It’s the basis for self-help groups from AA to Retrouvaille. I want married readers to note that the couples who contributed to this book grew closer to God in response to the challenges they faced raising their special-needs child, and, as a result, grew closer to one another. The child who precipitated a marital crisis became a source of healing for the entire family.

LOPEZ: What is KIDS?

VELASQUEZ: The acronym stands for “Keep Infants with Down Syndrome.” My friend Eileen Haupt and I both have daughters with Down Syndrome, and we noticed that there was no group in the March for Life representing one of the most highly targeted groups for abortion; the unborn baby with Down Syndrome. They are aborted at a rate of 92 percent when their mothers receive a prenatal diagnosis. We began KIDS to be their voice. The group began in fall of 2008, and was so well received by the pro-life media that our media outreach now lasts throughout the year and has included EWTN, Canadian TV, and various radio stations, including NPR. Our message is that a doctor can tell you about your child’s diagnosis, but only a parent can tell you about the joy your child will bring you.

LOPEZ: Your book includes a candidate for president. But is there really anything political about your book?

VELASQUEZ: I don’t consider politics relevant when promoting the idea of genetic diversity. If we as a society claim to have distanced ourselves from the eugenic idea of “inferior races,” then naturally, we should make an effort to welcome those whose genetic makeup gives them their unique appearance and personality. This is the spirit of cooperation that inspired Representative Cathy McMorris Rodgers to form the Congressional Down Syndrome Caucus with former congressman Patrick Kennedy. The caucus draws cooperation from both parties as it seeks to educate Congress and advocate for those who, like her son Cole, have Down Syndrome. After all, babies with extra “designer genes” are found in all political stripes.

LOPEZ: There seem to be stories every year about homecoming king and queen teens with Down Syndrome. How do you account for that?

VELASQUEZ: When Christina was born, Father John McCartney, a priest from my parish, called me at the hospital and asked if I wanted to speak with a woman from our parish on Long Island. Mary is an RN and the mother of ten, including Annie, her 20-year-old daughter with Down Syndrome. Mary cheerfully assured me that Annie graduated high school, obtained a job in the local bakery, was a godmother for three of her nieces, and lived a full and happy life. Annie’s biggest problem was obtaining a venue large enough for her 21st birthday party, since our entire town wanted invitations!

People with Down Syndrome have a gift for socialization and they often attract fans. I see it in my Christina, now a third grader, who is enthusiastically greeted by name by everyone in her elementary school.

LOPEZ: Do parents of children with special needs become activists of some sort more often than not?

VELASQUEZ: I do see this as a growing trend, thanks to the Internet. Blogs and Facebook groups run by parents of special-needs children are popping up every day, and we are well connected. Take, for example, the ads currently in Target and Nordstrom that feature Ryan Langston, a little boy with Down Syndrome. I consider this groundbreaking event a direct result of parents’ getting photos of their children out there. The reason they do it is that it helps a mom facing a prenatal diagnosis if she can say, “Oh, yes, he’ll look like that boy in the Target ad!” It is our way of including our children in society.

LOPEZ: I’ve heard some griping that Down Syndrome kids get more help/attention/press than others. Is that a real concern?

VELASQUEZ: Really? I think we are just catching up to other groups that have done a fabulous job at getting the word out, like the autism community. And in this world, attention translates into research dollars and treatments that make our children’s lives healthier and fuller.

It’s been estimated by Dr. William Mobley of UC San Diego that within a decade a drug will be available to help our children’s learning and memory be completely normal; in fact, clinical trials have already begun in Roche laboratories in New Jersey. We advocates see an urgent need to spread this good news, as new, non-invasive prenatal tests like MaterniT21 are hitting the market now that may be taken by women under 35 who are not normally screening for Down Syndrome. Because most babies with Down Syndrome are born to younger women simply because younger women have more babies, we fear a sharp increase in the abortion rate of babies with Down Syndrome once MaterniT21 becomes widely available to them.

The more attention we can call to promising research and the positive aspects of life with Trisomy 21, the more women will choose to give birth to their babies. Last fall, Dr. Brian Skotko of Children’s Medical Center in Boston conducted a survey of families raising a child with Down Syndrome and found a 99 percent rate of happiness among parents and children. This helps put to rest the misconception that such children suffer. We hope that the new test, taken in the tenth week of pregnancy, offers women an increased opportunity to inform themselves of the truth; there has never been a better time in history to give birth to a child with Down Syndrome.

LOPEZ: A lot, if not all, of your testimonies are from Christians. Can a parent raise a child without faith?

VELASQUEZ: Sure, it’s possible. Poet and atheist George Estreich describes his journey raising a daughter with Down Syndrome in his book The Shape of the Eye. But when I read the exquisite descriptions of his agony of soul, I am tremendously grateful for the light of faith that infuses our suffering with meaning, and pierces the lonely nights in the hospital with glimpses of heaven.

LOPEZ: Is it by design that so many of your contributors have strong faith, or have become close to God through their child?

VELASQUEZ: I did seek stories from those parents whose faith I admired, but it was far more common to find stories of strong faith among special-needs parents than not. Our children are such powerful examples of unconditional love, it follows naturally that, by parenting them, we are led into a deeper encounter with God.

I used to admire those holy elderly women at Mass, gently guiding their 40-something children with developmental disabilities to receive Communion, and think I could never be like them. Now, a decade later, I find myself a better mother with a more mature faith. In 30 years, I could be one of those saintly women I admired from afar, thanks to Christina, my elevator to heaven!

LOPEZ: Why is Jérôme Lejeune important?

VELASQUEZ: Not only was Dr. Jérôme Lejeune the award-winning geneticist who discovered Trisomy 21, the cause of Down Syndrome, in 1959, but when he saw that his discovery formed the basis for prenatal testing resulting in the 92 percent abortion rate, he dedicated his entire career to finding a cure for Down Syndrome. The scientific community vilified him for his testimony around the world defending the dignity of human life from conception to natural death. Dr. Lejeune had difficulty obtaining research money, and even received death threats, but he never wavered. He never lost hope and was such a magnificent witness that he became a coworker with Blessed John Paul II to establish a culture of life in society. The Pope called him “Brother Jérôme” and wanted him to found the Pontifical Academy for Life, a project that Dr. Lejeune was working on when he died in 1994. In 2007, his cause for canonization was opened: I hope that he will be a patron saint of those with Down Syndrome. His family formed the Jérôme Lejeune Foundation in Paris in 1996 to continue his research and treatment of those with Trisomy 21. Now the group has come to the U.S., where they fund 30 research projects to ameliorate the cognitive delays of Down Syndrome.

LOPEZ: A contributor or two cites Saint Gianna Beretta Molla? But isn’t hers too high a standard to ask parents to measure themselves against? She died for her child. No mother has to do that.

VELASQUEZ: Certainly the Church never demands that of a mother; that is why Saint Gianna was declared a saint, hers was heroic virtue. Having outstanding role models is not extraordinary, however. When athletes want to excel in a sport, they will put up posters of Olympic athletes for inspiration. Saint Gianna is a role model for us because she was a contemporary, educated, happy woman and an Olympian in the field of motherhood. We imitate her self-giving love when we go above and beyond what we thought motherhood entailed. That’s why in the book I refer to “the extraordinary vocation of special motherhood.” I believe that we special-needs moms have been called by Our Lord to a deeper vocation to motherhood, like Blessed Mother Teresa, who was called by Christ to abandon her convent of 20 years, to serve the poorest of the poor. Yet, where there is an extraordinary challenge, there is extraordinary grace. God doesn’t call the equipped, He equips the called.

LOPEZ: How can we help doctors? So many parents in your book got little encouragement from their doctor, instead having to beg to give their child a chance at life. One doctor even lied to the parents about the possibilities for the child living much beyond birth.

VELASQUEZ: Doctors may appear to have an agenda, but it’s most helpful to assume that misconceptions can be overcome with information. They should be encouraged to educate themselves through conferences like the one I am giving about the latest research — whether it be medical research or improved educational methods, so they can help their patients give truly informed consent when a diagnosis is given. They also need the encouragement of seeing our families living fulfilled lives with a child with special needs; in many cases they have not seen families like ours. I recently interviewed Princeton bioethicist Peter Singer, who admitted he had no exposure to people with Down Syndrome. I am hoping that a family with a child with Down Syndrome befriends him so that his eyes can be opened to the joy such children bring.

There are increasing numbers of outreach programs to medical students from members of the special-needs community. One of them at the Boggs Center in New Jersey has a medical student spend a day with a family raising a child with special needs. These relationships can offer the doctor a different perspective than was taught in medical school. Offer to chat with your obstetrician’s other patients who are expecting a child with a disability, or give them a copy of my book. There is also a beautiful free pamphlet available through the National Down Syndrome Society called “Understanding a Down Syndrome Diagnosis.”

LOPEZ: What should someone reading this that has just gotten a troubling prenatal diagnosis for a child do?

VELASQUEZ: Seek out a support group like Prenatal Partners for Life or the others listed in my book, contact me through KIDS, or talk to their pastor. One of the things that disappointed me was that although my family members were practicing Catholics, not all of them were ready to support me when my daughter was born. Sometimes our loved ones have to go through their own journey from denial to acceptance, and often it’s the mother who leads them, as the child leads her.

If she has decided that she is not up to raising a child with Down Syndrome, she should know there is a registry of over 200 parents waiting to adopt a child with Down Syndrome in the U.S. at the Down Syndrome Adoption Network.

LOPEZ: What should someone reading this who is at wits’ end caring for their child with special needs do?

VELASQUEZ: Realize that you are not alone; we all go through circumstances where we feel overwhelmed. Seek out help from a local or online support group, case manager, or your child’s school. There is more help available to parents now than ever before —whether it’s behavioral-management tips, respite care, monetary grants, or just someone who can accept you and your child, put a hand on your shoulder, and say with complete sincerity, “I know how you feel.”

— Kathryn Jean Lopez is editor-at-large of National Review Online.


The Latest