*Today’s article is written by Dave and Nancy Deuel, and is drawn from their new mini-book, Help! My Child has a Disability.
It was a busy time in our lives. Dave tells the story. We had gotten married, and I had finished school and taken my first teaching job. We had moved from the East Coast to the West Coast, had our first child, and were preparing for our second. We were also in the process of buying our first home. With changes coming at what felt like the speed of light, we yearned for a taste of the quiet life.
No one could have prepared us for what came next.
Early one evening, we drove to the hospital. Nancy was in labor with our second child. The nurses welcomed us at the door and seated her in a wheelchair. We joked nervously about a “throne on wheels” fit for a queen. Having turned down the amniocentesis test, due to its risks, we prayerfully anticipated a healthy delivery.
The nurses at Henry-Mayo Newhall Hospital in Santa Clarita, California, were outstanding. They were witty, alert, and lighthearted. Their joking soothed our nerves. The doctor, on the other hand, was all business, as we’d hoped he would be. With the stage set for a perfectly normal birth at an excellent hospital, all was well . . . or so we thought.
When the moment of delivery arrived, I was ready to give our little girl the trendy LaBoya bath. This was supposed to soothe the newborn, as it put her back in a state of liquid suspension, simulating a mother’s womb. The already focused physician was hyper-vigilant. Why couldn’t he just lighten up a little? Aren’t births supposed to be happy occasions? This doctor was stealing our joy! After all, all was well.
But all was not well.
As our sweetheart entered the world, she hardly made a sound. The silence, combined with the looks of panic our doctor gave the nurses, sent a sick feeling to my stomach. Our little girl was in trouble. I was in trouble. What was usually a noisy, happy moment when the pink, squalling little bundle bursts forth making first sounds was a deafening hush.
Although the delivery team reluctantly allowed us to do the LaBoya bath, I held our baby loosely. She was limp, motionless, and blue. Finally, the team whisked her off to the nursery, or so I thought. No! It was off to the Neonatal Intensive Care Unit (NICU). While they struggled to be polite and sensitive to our feelings, their facial expressions and overall quiet showed clearly that something was wrong. I was getting sicker and sicker in my stomach as my wife rested, unaware that anything was wrong.
That night, I drove home praying, numb and scared. Although I still had no idea what was wrong, I knew for certain we were bracing ourselves for something bad. Exhausted, I dropped off to sleep. But just as I did so the phone rang. It was Nancy. She was crying. “They won’t let me see our baby.” In a stupor, I recklessly drove several blocks to the hospital and parked in the wrong lot. As I ran through the front door we had entered joyfully just hours earlier, one of the nurses who helped deliver our baby met me. She stammered on the verge of tears, “I need to talk to you about what’s going on.”
“We had to take your daughter to the NICU because her heart stopped. We were able to revive her, but she’s doing very poorly.” Then she said the words I couldn’t bear to hear: “She may not live.” I raced to see my little girl. There were so many wires and tubes attached to her that I could hardly find her. I looked up to see the nurse watching my reaction. She covered her mouth and ran for the door, crying. My legs felt like they would buckle. “Lord, not this, please” repeatedly crossed my mind.
Making very little eye contact the doctor repeated the nurse’s message, but with much less empathy. “Things are bad. Her heart stopped and we spent twenty minutes resuscitating her. She may not live. If she does live, she may have additional brain damage.” The word additional hit me like a freight train. It was final. The only thing we knew for certain was that our little girl had some sort of brain damage. That point was certain. The doctor also told us that if we wanted to confirm the diagnosis, we would need to do a chromosome test. We had no idea what he was talking about.
After two weeks of waiting, the first chromosome test was thrown out due to accidental contamination. When we were asked if we wanted to do another test, I impatiently responded, “No, you’re not putting my little girl through that again.” So, we moved forward with no clear genetic testing, only a cluster of symptoms that characterized Down syndrome. Our hearts ached.
Our pediatrician called several weeks later to confirm the diagnosis of Down syndrome. Down syndrome. I hated those words. What I hated worse was Down’s baby, or just Down’s. I wanted out. In the vernacular of a former generation, I was the father of a retarded child, or as some would say, a “Mongoloid baby.” That cut deep. What responsible human being would come up with such a title? What sensitive society would use it?
Several thousand miles away from family, alone and crushed, we tried to move forward with life. At church, people genuinely tried to encourage us. One woman asked Nancy sympathetically, “Do you plan to keep her?” Our first thought was, “Well, what else would we do with her?” Someone explained to us later that the previous generation was encouraged to institutionalize children “like this.” “Like what?” I fired back. I had entered the world of language hypersensitivity. I was taking a nosedive.
Our minds sought refuge in Bible verses like this:
Children are a heritage from the Lord.
All children? Maybe not some children. And then there was another verse:
Take delight in the Lord,
and he will give you the desires of your heart.
What we desired was a normal, healthy baby. These verses were not working for us. The confusion was overwhelming. In a particularly dark moment, life seemed like it was over.
But life was not over. A bright new day had dawned for our entire family, although it would take a while for us to realize it. Learning to accept God’s gift would ease the pain and keep us going. But that would take some time and personal growth.
Today, our daughter Joanna is thirty-two years old, reasonably healthy, and quite happy. As a family, our lives are rich with God’s grace. Our other three kids have compassion ahead of their years, and dote on their sister and enrich her life. God has given us the desires of our hearts: children. All children are a gift from the Lord. His mercy lifts parents up and carries them over every rough road. And his light breaks through our darkness.
*Do you know a family affected by disability? Why not gift them a copy of Help! My Child has a Disability.