So many questions. Most of which had to do with Stephen’s life and what he would be able to do. Would Stephen be able to read? Would he be able to tie his shoes? Would he speak well? Would he be sickly, or would he have relatively good health?

The vast majority of these questions would be answered only with the passage of time. Other parents of kids with Down Syndrome and local support organizations like the Kansas City Down Syndrome Guild introduced us to a number of excellent resources that told us much of what we needed to know, like the fact that Stephen would be more like other children then he would be unlike them, and that he would learn everything the other children learned, but at a slower pace.

The question of the biological outcomes of children with disabilities is best left for the doctors, clinicians, and therapists. What concerns me the most are the moral reasons why children with disabilities deserve to live, and to have meaningful and fulfilling lives.

If you are expecting a child with a disability, I encourage you not to make any rash decisions concerning the pregnancy.

If you’ve recently had a child with a developmental disability, I hope you’ll see that God’s plan for your child does not involve being locked up in an institution, but rather that he or she be permitted to have, like you, an abundant life in the Lord Jesus Christ.

Abortion Was Not the Answer

With advances in modern medicine, individuals today are faced with decisions and dilemmas that were unthinkable even 100 years ago. In the face of ever-advancing technology, how does the Christian apply ancient truth to current science and still make it relevant and applicable?

In short, by following the Word of God. The basic building blocks of truth in Scripture are as true today as they were when the Bible was written thousands of years ago.

They will be true forever.

Even back in the late 1980s and early 1990s, tests were available that could identify whether babies in the womb had Down Syndrome, and those tests could be performed before the 20th week of the 40-week pregnancy.  We declined those tests, because we had already decided that their results were irrelevant. We were having this baby, regardless of the outcome.

We believed that our child, even while he was still in the womb, was loved by God, just like the rest of us (John 3:16), and that he was made in God’s image, just like the rest of us (Genesis 1:26).  He was “fearfully and wonderfully made,” and God knew him while he was still in the womb, just as God knew the prophets before they were born. And just like He ruled over Sally’s life and mine, God ruled over Stephen’s life as he developed and grew in his mother’s womb. Because of that, we believed that only God could say whether Stephen would be born alive.

An Abundant Life.

We chose to help Stephen have an abundant life, just as Jesus came so that we could have life and have it in abundance.  This choice gave Stephen not only the opportunity to thrive and flourish (of which he has taken full advantage!), but it improved the quality of our own lives. Had we chosen differently, we might have missed out on the innumerable joyous moments that came along with his early years. I can personally testify that the cuteness factor of his baby pictures is off the charts. Allowing ourselves to fall in love with Stephen for who he is, without focusing on the difficulties we might face as a result of his disability, freed us from the burden of sorrow, worry, and shame. And as a result, we were amazed by his progress each and every day. Most days we didn’t even remember that he was disabled. He was just Stephen.

Avoiding Self-Pity

Due to medical conditions, Stephen stayed another ten days in the hospital. On our last night at the hospital before we went home without him, the hospital hosted a steak dinner for the parents. The dinner was excellent, with a well-cooked steak, baked potato, salad, and dessert.

The other couples were excitedly chatting about what had just occurred and what life would be like going forward. Sally and I felt oddly excluded. The reality was not lost on us that we were leaving our baby at the hospital, and that his life would look much different than the lives of their newborn children.

So, we ate with quiet resolve not to feel sorry for ourselves, but to wait on God to see what He had planned for Stephen, and for us.

Statements by friends and family that were intended to be comforting only added to our discouragement. “God only gives special kids to special parents.”  “Those kids are always so loving. You will really appreciate that about him.”

We understood how difficult it is to comfort someone when you have no experience or knowledge about the situation they’re going through. However, we didn’t believe then (and don’t today) that God chose us to be Stephen’s parents because we were better parents than anyone else. And, at the time, having a child with a developmental disability didn’t feel much like a gift from God.

We also thought that saying that all kids with Down Syndrome were better at showing love was an easy stereotype. We thought Stephen would likely be a loving, considerate person even if he didn’t have any “chromosomal abnormalities.”  We still hold that opinion today.

In a moment of raw honesty, I told Sally a few weeks after Stephen was born that, while I did not feel it then, the day would probably come when I would think that having Stephen as my son was the greatest blessing of my life.

Today, after 25 years of being Stephen’s dad, it was clearly the most prophetic thing I’ve ever said.

One thought on “Answering the Tough Questions

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