I am very proud of my oldest son, and very pleased with the man he has become.

I need to make that absolutely clear. Because what I’m about to say could sound like sour grapes.  That’s not at all what I’m saying.  But I’d be less than candid if I didn’t at least acknowledge that, as a dad, I had to deal with some disappointments as a result of having a son with Down syndrome.

Most fathers dream of their oldest sons starting for the high school football team, going to college, maybe someday taking over the family business. I wasn’t an athlete in high school, so I didn’t necessarily carry those expectations.  I also didn’t own a family business, so I didn’t worry about that too much, either. However, I did do well in school and earned a law degree.  My wife is smart, driven, and an incredibly hard worker.  Before kids, I thought that my oldest son (or daughter) would follow in our footsteps.

It is amazing how your point of view changes when faced with something like Down syndrome.

Many of my other young adult friends had normal sons.  I had to come to terms with the fact that my oldest son was not going to have many of the same experiences that my friends’ sons would have.

I’ve often heard the birth of a child with special needs is like a death.  As parents, you mourn the child that you thought you were going to have. It may seem to a morbid way to look at things, but I think it’s very instructive.

In my experience, it’s the fathers that are the most susceptible to feeling this way about their disabled sons.  Will my son be tall? No, probably not. Will he pitch for his high school baseball team? That probably won’t happen either. (Stephen used to tell people that his dad could throw a 98-mph fastball. Sound like a movie plot?  It is. More about Stephen’s affinity for sports movies later.)  So, if he’s shorter and slower, could he play offensive line on the football team, or even wrestle?  Well, many kids with Down syndrome have skeletal and neurological issues that prevent them from participating in those kinds of sports, and most of them won’t have the talent to perform at that level, either.

The same will be true for just about any other activity that normal kids do. Children with Down syndrome often can do the same things other kids do, just not with the same speed, quality, or skill, all of which are the very attributes that dads take pride in as their sons grow into adult men.

I felt each of these things as a young father of a child with Down syndrome, even in the first couple years of Stephen’s life.  I even remember telling my wife that I could even see myself favoring our other children (assuming they were not disabled) over Stephen.  And looking back, that could have very easily happened, had we allowed it.

Having Stephen as our first child came with some very significant advantages. We lived for two and a half years with Stephen as our only child. Much of our lives were built around Stephen and his needs, such as early intervention, doctor visits, etc.  And thankfully, his early needs were not all that great. We were blessed to live a relatively normal life with a happy, healthy, fun-loving son.

Our other children were born into Stephen’s world, not the other way around.  If anything, the needs and desires of our non-disabled children ran the risk of being superseded by Stephen’s needs.

My point is this. It was okay for us to mourn the loss of the child we thought we were going to have, but we didn’t want to miss celebrating wonderful child we did have. Like any other child, our Down syndrome child had talents, abilities, interests, and personality quirks (and I do mean quirks) that make Stephen his very own person. Believe me, it’s been as much fun finding out who Stephen is as it has been with our other three children.

If you really must have athletic competition, there’s Special Olympics. The competition at the Special Olympics is as spirited, if not more so, than any other sports competition  at any level. These kids love their sports, they love to cheer each other on, and they love to win.

At your lowest points (and they will come), you may wonder if you did something to deserve having a disabled child.  In fact, we poured over books like When Bad Things Happen to Good People by Harold Kushner, looking for answers to that question. Every time, we came away unsatisfied.

I think about the question that Jesus’ disciples asked Him when they came upon the blind man at the gate. The disciples asked Jesus whose sin caused the man’s blindness. Jesus responded that it was not the blind man’s sin, or anyone else’s sin for that matter. The man was born blind for the glory of God. I firmly believe that this is the very reason Stephen was born with Down syndrome. His having this disability glorifies God in a way that could never have happened were Stephen born without Down syndrome. Yes, non-disabled children can glorify God in many wonderful ways, but Stephen glorifies Him through an innocence and love that are striking, even to those who are meeting him for the first time. God has also given Stephen an astounding knowledge of and love for God, especially considering his mental and emotional age.

No, my oldest son will not follow in my footsteps. But considering Stephen’s impact for Jesus with everyone he meets, I am also not able to walk in his.

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