Special Needs, Special Gifts - Lent

by Nancy Valko, RN

Last October during National Down Syndrome Awareness month, a new test for detecting Down syndrome as early as 10 weeks into pregnancy was announced with great fanfare by many news organizations.1 Routinely mentioned was also the sad fact that around 90% of babies diagnosed with this condition are then aborted. Indeed, although more people than ever identify themselves as pro-life in public opinion polls, there is still majority support for abortions in the so-called “hard case” of birth defect.

Ironically and also in October, a new study was published in the American Journal of Medical Genetics2 on how the vast majority of people with Down syndrome and their parents viewed their lives as happy. For example, 99% of people with Down syndrome said they were happy with their lives, 96% of siblings expressed affection, and 97% of parents said they were proud of the child with Down syndrome.

These statistics might surprise the average person but not those of us who have had a child with special needs. And while Down syndrome has become the template of public attitudes toward abortion for unborn babies with birth defects, Down syndrome is only one of thousands of conditions that can result in special needs.

When I was a young student nurse, I had part of my training at Cardinal Glennon Children’s Hospital here in St. Louis. I met many parents who were caring for children with a variety of problems, some devastating or even lethal. I was amazed and inspired by the parents I met but I knew for sure that I could never do what they did.

When I started my family, I wondered how I would cope if one of my children was born with special needs but I was reassured by the old axiom that “God never gives you more than you can handle”. Since I didn’t think I could handle a child with special needs very well, I decided I was “safe”.

But in 1982, with the birth of my daughter Karen, I discovered the real truth about the old axiom: God is always ready to give us the grace, joy, and love to deal with any situation.

This is why I was so honored to be asked to contribute to an extraordinary new book titled A Special Mother is Born: Parents Share How God Called Them to the Extraordinary Vocation of Parenting a Special Needs Child by Leticia Velasquez. Leticia is a talented Catholic writer and mother of three girls, one of whom has Down syndrome. She is also the cofounder of Keep Infants with Down Syndrome (keepinfantswithdownsyndrome.blogspot. com/).

This book is not only a memorable collection of stories about families responding to a variety of conditions affecting their children but also a great resource for parishes, pro-lifers, educators, health care professionals, parents, and virtually anyone whose life has been touched by a person with special needs. The book can be purchased at aspecialmotherisborn.blogspot.com/ as well as other sites such as Amazon.com and Barnes and Noble.

One thing I have learned over the years is that special needs are not limited to children at birth. Some of our children are affected by conditions or problems that can occur long after birth. But the truth remains the same: God is always with us.

With permission from Leticia, the following is my contribution to her book.

Chapter 15 —The Hospital Visit

I didn’t have a plan for this.

It was 1982 and I just stayed awake, crying and smoking five packs a day in my hospital bed after my daughter was born. The fact that Karen had Down syndrome was a shock but the news that, according to the cardiologist, she only had two weeks to two months to live because of an inoperable heart defect was unbearable.

At the time, I had a 5-year-old son and a 3-year-old daughter excitedly waiting for their new sister and a husband recovering from depression. I was sure we could all adjust to the Down syndrome but I couldn’t imagine any of us capable of watching our baby die. In desperation, I asked the nurses if they knew of anyone who had gone through the death of a child. No one knew of anyone like that but one nurse did suggest a co-worker who took in foster children. I couldn’t understand how that nurse could possibly help but, as I said, I was desperate.

Anna came in late one night and I poured my heart out to her. I admitted that I was afraid to get close to my baby because of the pain of losing her and I agonized about letting my other children get too attached to Karen. And, of course, I was worried about my husband’s depression spiraling out of control.

Anna told me that every time she gave up a foster child to adoption, it was like a little death to her because that child was gone, possibly forever. Then she told me something surprising. She told me that she could tell I was the kind of person who would automatically give my heart to my child. I remember thinking at the time that she had more faith in me than I had in myself.

Then she told me something I would never forget. Anna said that giving my heart to my child was a no-lose proposition. “If Karen dies, you will have the comfort of knowing that you gave her everything possible and, if she lives, you will have the comfort of knowing that you didn’t waste any time”, she said. Anna also told me to trust God.

Those words were like a healing balm because they were so true and just what I needed.

It turned out that the doctors were wrong and 3 weeks after Karen was born, we found out that her heart defect was indeed operable. Unfortunately, Karen died at 5 1/5 months from complications of pneumonia and just before her open-heart surgery. But her short, precious life did indeed prove the wisdom of Anna’s words.

Not long after Karen died, I went back to the hospital to thank Anna for her advice. But even though I had graduated from nursing school at that hospital and knew the nurses there, no one could remember Anna or even anyone like her.

I finally talked to the supervisor, an old friend who came to see me after Karen was born. She was positive that no one like Anna was there at the time but — and this made the hairs on both our necks stand up — she suggested that perhaps Anna was an angel.

Of course, we’ll never know for sure but Saint Ann is not only my namesake but also the mother of the Blessed Virgin herself. And I can certainly imagine Saint Ann speaking those same words of wisdom to one of her suffering children like me.

Notes:

1 “New Test for Down Syndrome Raises Hopes and Questions” by Andrew Pollack. New York Times. October 17, 2011. online at: nytimes.com/2011/10/18/business/sequanons-test-for-down-syndrome-raises-hopes-and-questions.html.

2 “Self-perceptions from people with Down syndrome” by Brian G. Skotko, et al. American Journal of Medical Genetics. October 2011. onlinelibrary.wiley.com/doi/10.1002/ajmg.a.34235/full.

Nancy Valko is a registered nurse from St. Louis, president of Missouri Nurses for Life, a spokesperson for the National Association of Pro-Life Nurses, and a Voices contributing editor.