On a November Saturday

It was the late fall of 1982. The first semester of my junior year at the University of Kansas was almost finished, and my girlfriend’s sorority’s fall service project was to help with the Lawrence Special Olympics bowling competition. They were short on help, so my future wife asked me to tag along.

What follows was what I like to call “God’s audition to be parents of a disabled child.“ We had a wonderful time bowling, laughing, and eating with these young adults. Most of them had Down syndrome, but several others had different cognitive or physical disabilities. Regardless, my future wife and I left that event very happy that we had been involved, and wondering whether we should volunteer for future Special Olympics activities.

Little did we know what God had in store for us.

Helping with that bowling tournament was like being a grandparent. It was great fun while it lasted, but the kids weren’t really “yours.“

But once that disabled child comes home with you from the hospital, things begin to change. Slowly and imperceptibly at first. The first time we went to a Down Syndrome Guild meeting was just after our oldest son was born, seven years and a few months after that fateful Saturday in November 1982. I distinctly remember walking into the Guild meeting room, full of families who had also just entered the world of special-needs children, and experiencing a very familiar feeling.

I was instantly transported back to the 6th grade, when the class of disabled kids was in the self-contained classroom next door to my homeroom.  As they walked by our door, from lunch or the playground, I remember feeling an uneasy mixture of fear and pity. Fear, in not knowing what “those kids“ might do. And pity, at once thankful that I was not among them, and believing that their lives must be something less than mine.

Thankfully, over the years that all changed. It started with events like Special Olympics, where I could actually meet disabled kids, and grow to like them.

And then, I joined their dads.

Within a span of just a few short months, all those kids in the Down Syndrome Guild became my kids. It was impossible to know them all well, but 28 years later, I still know their names. William, Sean, Matthew, another Stephen, Kyle, Paul.

And their parents became some of our very best friends.

How appropriate it is, then, that our son’s favorite activity is….

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I’d love to hear from you about your experiences with a disabled person in your life.  Please take a few moments to leave a comment. It only takes a few seconds!

Perspective, Promise and Presence

There are just two things I want to know when I start hiking a trail.

Where does it go?

And how hard will it be?

For me, the trail is a metaphor for life. For the passage of time. For choices made and not made.

I’m also fascinated by the fact that inverting just two letters in the word “trail” creates a word that is completely different and yet so closely related.

You see, it’s always during the times of trial in my life that the trail of my life is the most obscure. You know, those times when life throws a curve. In my case, it was the birth of a son with Down syndrome. Then, the loss of a career job. And later, a traumatic brain injury to my youngest daughter. For others, it’s a catastrophic illness, or the disintegration of a family.

Perspective

The Bible teaches that God’s perspective on trials is 180 degrees from the world’s view.

Consider it pure joy, my brothers and sisters, whenever you face trials of many kinds, because you know that the testing of your faith produces perseverance.  Let perseverance finish its work so that you may be mature and complete, not lacking anything. — James 1:2-4

How can James possibly expect us to rejoice in our trials? During times of trial, even the next single step is uncertain.

Promise

I’ve always loved the quote from Michelango when he said, as he was staring at a plain rectangular block of marble:

The sculpture is already complete within the marble block, before I start my work. It is already there, I just have to chisel away the superfluous material.

The same is true for each life’s trail, when faced with the apparently impassable jungle of a trial. The trail is already there; it’s been there since the beginning of time. No, it isn’t marked, at least not that you can see; but that doesn’t mean it hasn’t been set out for you by God.

Presence

It’s during the times of trial that God allows us to participate in finding the trail where none appears to exist.  So even though you don’t have a paper map, and the GPS on your phone doesn’t have what it takes, lean on and lean into God. He, through his Word, is your map.

I gain understanding from your precepts; therefore I hate every wrong path. Your word is a lamp for my feet, a light on my path. – Psalm 119:104-105

Waiting for the Light

That’s exactly what it felt like.  Waiting for the light to break through.

So many strange words.

Trisomy 21.

“Chromosomal abnormalities.”

Down syndrome.

For the first two days of March 1990, our world felt very dark. Our first child had just been born with a life-altering, if not life-threatening, disability. In those weary 36 hours, long minutes of numb silence were followed with tear-filled phone calls to grandparents, family and a few close friends. A broader announcement would have to wait.

To wait for the light.

In the 22nd hour of our darkness, we reached the end of ourselves. At the tender age of 27, the young leader of a new family of three, I was no longer able to lead.

All I could do was follow.

After a late night of prayer with an unnamed and otherwise unremarkable hospital chaplain, I laid myself down on a narrow, hard, 1970s-era fold-out hospital room chair, and tried to sleep.

I’ve never slept so well in all of my life. Before or since.

Come to me, all who are weary and heavy laden, and I will give you rest. Matt. 11:28

When does something so ordinary become a miracle? When the Creator of the Universe makes it so.

That wonderful night’s rest was just the light we needed to make the tough decisions ahead of us, as we faced a life raising a son with Down syndrome.

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