By BILL CLARKE, Commentary | Published April 11, 2018
“Parenthood is about raising and celebrating the child you have, not the child you thought you would have. It’s about understanding that they are exactly the person they are supposed to be and that, if you’re lucky, they just might be the teacher who turns you into the person you are supposed to be.”
– Joan Ryan
There is a vast community of parents, young and old, who were given a unique cross to carry in life. God selected them to be the parents of children with special needs. I know whereof I speak: Two of our five children were born with severe disabilities. No one, except the parents and immediate family, can possibly understand what it is like to raise a disabled child.
This is a particularly challenging problem for those seniors who still have the responsibility for an aging adult special needs son or daughter. The concern is obvious: what will happen to their children when they are gone?
Every parent of a special needs child experiences an enormous personal trauma when their child is born with a disability or develops a life-altering disability. We pray for and expect to have healthy, normal children, but every now and then a special needs child comes into the world and forever changes a family’s life and priorities.
Let me take you back to the birth of our first son to provide an insight into what parents of special needs children experience when they learn that their child is not normal. Like all new expectant parents my wife, Patty, and I were excited and anxious to have our first baby. Patty, a registered nurse, experienced a beautiful pregnancy. We went to natural childbirth classes together. We did exercises. She blossomed into a perfect picture of motherhood. There is a beauty in a woman in the latter months of pregnancy that transcends the discomfort and anxiety.
We were ready and anxious when the contractions started. Back in those days husbands were not allowed in the delivery room, so I waited anxiously in the smoke-filled, stuffy waiting room with the other expectant fathers. Finally, the nurse called my name and announced that we had a baby boy. I was ecstatic. I called Patty’s parents with the good news—it was their first grandchild. Then I called my mother. They had not yet brought our little boy to the viewing room, so I went back to pacing back and forth.
Suddenly I looked up and saw our doctor, whom we knew well from our parish, in full delivery garb, walking down the hallway … and he was crying. I jumped up and ran to him. I said, “Doctor Matt, what is wrong? Did something happen to Patty or the baby?” He wrapped his arm around me and exclaimed, “Patty is fine … but your baby was born with a congenital anomaly.” That’s “doctor speak” for a birth defect.
I cried out, “What? What do you mean?” Without having any time to think of a softer way to describe the condition, he said, “Your baby was born without eyes!”
It hit me like a ton of bricks. I was dazed … I never heard of such a thing. We stood there in the hallway crying and hugging each other. I asked if Patty knew. He said no because they didn’t discover the condition until they tried to put drops in his eyes. Then they took extra time to clean him while they moved Patty to the recovery area.
We then faced the daunting task of telling Patty. We walked into the recovery room, and Patty knew instantly that something was wrong. She cried out, “Is the baby all right?” I sat on the side of the bed, embraced her and whispered, “No, honey, our little boy is not all right … he was born with a congenital anomaly.” Just like me, she replied, “What do you mean? What is wrong with him?” I then repeated the same crushing thing that Dr. Matt had said, “He was born without eyes!”
Patty exclaimed, “Oh, my God! Oh, no!” I hugged her tightly as Dr. Matt and the delivery room nurses stood silently with tears streaming down their cheeks.
We cried for several minutes … then a remarkable thing happened. Patty pushed me back, looked deep into my eyes and said, “Bill, it is not his fault … it is all the more reason to love him! Now, bring me my baby!”
From that moment forward Patty’s supreme act of faith directed us to accept the will of God and begin a lifetime of challenges and rewards for being parents of a special needs child.
Every year in the world an estimated 8 million children are born with a serious birth defect of genetic origin. The global report on birth defects from the March of Dimes, “The Hidden Toll of Dying and Disabled Children,” reveals that at least 3.3 million children less than 5 years of age die annually because of serious birth defects. Another 3.2 million who survive may be mentally and physically disabled for life.
How does a parent overcome the shock and disappointment of having a special needs child? There is no one answer. It takes deep faith, prayer, perseverance and the help of family, friends and sometimes, professional counseling.
In the Archdiocese of Atlanta, we are fortunate to have a disabilities ministry that serves the spiritual and support needs of special needs people and families. This ministry is headed by Maggie Rousseau, a mother who lost a special needs son and has since become a strong advocate in helping other parents and families.
The challenge for seniors with special needs children is that many of the children survive to become adults. There comes a time when the parents and families are no longer physically able to care for their children in a home setting. They need physical, psychological and practical support. If you need some guidance about a special needs family member, contact Maggie at 404-920-7682 or firstname.lastname@example.org.
The most difficult thing that parents of special needs children experience is the sadness that comes from knowing that their child will never be able to experience some of life’s simple pleasures. It prompted my wife and me to express our feelings in a poem called, “The Exceptional Child,” which we share as a reminder that we are blessed.
Pray for all of God’s special people and their parents and families. We are comforted that our two special sons will achieve their eternal salvation because God will welcome them as one of his own very special, exceptional creations.
Bill Clarke, former business executive, teacher and senior citizen, emerged from his third retirement to serve as the associate director of professional development for the archdiocesan Office of Formation and Discipleship. To send Bill your thoughts on this and other topics, send an email to email@example.com.