Patricia E. Clawson
Moments after Darla Jantsch gave birth to her first child on July 1, 1982, she knew something was wrong. As a nurse, Darla recognized that their newborn son had Down syndrome. Her husband, Steve, however, suspected nothing. When their doctor told them in the recovery room, Steve fell apart.
As the reality of raising a child with special needs set in, they cried a good deal. To learn more about Down syndrome, Steve first read that more than 50 percent of babies born with Down syndrome die before the age of one. Now they realize that that information was out of date, but at the time it heightened their concern.
While Darla’s maternal instincts kicked in, Steve was comforted greatly by their pastor, Charles Dennison, of Grace OPC in Sewickley, Pennsylvania, when he spoke with them on their baby’s first evening. Although he reminded them of their hope in Christ, what Steve latched onto were his words, “We will learn more from him than he will learn from us.”
The Jantsches never asked, “Why did you do this to us, Lord?” They never felt it was a curse from God. Nor did they feel that Mark needed healing, as some prayed. “He’s not sick,” said Steve. Mark, however, was born with a hole in his heart. Yet by the time he was old enough to have corrective surgery, the hole had disappeared!
“We learned to appreciate every step of his development, even when he could only lift up his head fifteen degrees,” said Darla.
Mark was taught in special education classes with mainstreaming for non-academic activities. The Jantsches appreciated that his public school trained him for employment. Mark could sometimes be a “pill” in school due to inappropriate behavior, prompting countless meetings with staff to strategize how to help him, said Steve. At times he had shown too much attention to girls and needed to be redirected when to give people hugs.
Steve describes Mark, now 32, as loving, helpful, kind, and a joy to be around, as well as stubborn, immature, challenging, and one who doesn’t adjust well to change. He needs guidance on hygiene, dietary habits, interacting with others, and appropriate entertainment. Mark is high functioning with mild to moderate mental retardation. He lives at home and cooks eggs, does laundry, and goes to work on a bus. Every morning they pray with him. Each summer, he enjoys helping in the kitchen at the Presbytery of Ohio Youth Camp and going to the lectures. He has become a fixture at the camp.
At the time of Mark’s birth, Steve and Darla struggled with the concept of infant baptism. If salvation depended on the individual’s belief in God at the age of accountability, “What if Mark never grew up and professed faith?” Steve lamented. That question helped to confirm their belief in infant baptism.
Now an elder at Grace Church, Steve points to Mark when he teaches high school students about infant baptism and salvation: “There’s the symbol of grace within the covenant. We don’t presume, but trust in the promises of God and pray for him. Mark professed his faith and the session was content with what he was saying: ‘Jesus loves me.’”
The Jantsches chose to hold Mark back in Sunday morning instruction until his sister became old enough to attend. If Sunday school teachers and others asked how they should treat Mark, Steve told them, “He’s a kid. Treat him like any other kid. Expect he’ll need to be disciplined.”
The opening exercises before morning instruction involved children reciting the catechisms and Bible verses they had learned that week. While most of the kids moved directly from the Children’s Catechism to the Shorter Catechism, Mark went through the Children’s Catechism four or five times and then got through two-thirds of the Shorter Catechism. Since Mark reads at a third-grade level, the Jantsches helped him with the memory work weekly, paraphrasing the difficult phrases.
Mark made a profession of faith at sixteen. “My concern was that I didn’t want Mark treated too differently, but he needed a simpler set of questions,” said Steve. “We rehearsed the questions and answers until he could recite them. When an elder asked a question, he answered with a great deal of feeling. He was willing to own it.” Today when Mark passes an ambulance on his bus ride to work, he prays for the person inside. When he reads the newspaper, he brings up items for prayer.
Although not theologically astute, Mark loves to go to church and serve by putting up the hymn numbers in their wooden holders at the front of church, setting up chairs and tables for fellowship meals, and reminding the ushers that they need to get to the door to do their jobs! “He is responsible and (because of the Down’s nature of liking routine) he is dependable,” said Steve. “He’s strongly OP.”
Mark takes notes during sermons. Recently he told a minister he didn’t preach long enough because he had only one page of notes. At the evening service, the congregation recites a question and answer from a catechism or a section from a confession. On Sunday afternoon, Mark prepares for that by reading the text and then going to the hymnal index to find a hymn that deals with it. At evening worship, he’s the first to request a hymn. “Mark is more consistent with his devotional reading than the rest of us,” said Steve, adding that Mark often makes them late because he won’t leave until he finishes.
“Mark has taught us to reflect more on what is important to God in this life as we see how Mark deals with life,” said Steve. “Simplicity, patience, empathy, and forgiveness are all heightened by his being who he is, more so than if he didn’t have Down’s.”
When Mark’s future loomed, the Jantsches worried what would happen to Mark when they were no longer able to care for him. Their three younger children, Hannah, Peter, and Caleb, comforted them by saying, “We’ve always known we would take care of him.” Their children require any future mate to get along with Mark. Darla explains, “We as a family have an awareness that God is in control and takes care of all things.”
This has become all the more important since Hannah recently gave birth to a little girl with tuberous sclerosis, a rare genetic disease that causes benign tumors to grow in vital organs. Newborn Elise has tumors in her heart and brain. “We’re sad that she will have health issues, but we’re not frantic,” says her grandma, Darla.
“Our trust is in God, not in the things of this world, even our children,” echoes Steve. “Our confidence is that ‘He works all things for good to those who love him.’ Maybe we don’t see it right now, but God sees things in eternity, and we are to think his thoughts after him. We must have a heavenly perspective on all things in our life. Earthly family is not permanent, but heaven is. Faithfulness is what is important from the perspective of heaven. Our faithfulness in raising our children is what counts.”
What advice would Darla give to parents of children with Down syndrome? “Trust God and treat them like you treat your other children.” Steve adds, “Praise the Lord for another covenant child. Be open with the church about their struggles and joys.”
“Mark has been a blessing,” said Steve. “He has joy in doing his work and recreation and enjoys life. I have dissatisfactions and I learn more from him about enjoying things. Everyone needs a Mark.”
The author is the editorial assistant for New Horizons. New Horizons, January 2015.