Jonathan Takes Lead

“It’s not fair.” Jonathan says this a lot these days. He has watched his siblings grow up, learn to drive, get their first cars, go off to college, get married, and determine the courses of their lives while he experiences stricter boundaries. We take pains to allow Jonathan to do what he can. But some things he cannot do. He can drive the lawn tractor and the ATV’s, but he can’t drive a car, at least not on the road. (Although his older brother did let him drive on the road a few years ago—an experience Jonathan never lets us forget.) He can’t go away to college, yet he did get to go away to a special residential school for a few years—and we refer to that as his college experience. He probably will never marry. And what is most difficult for him is that he seems to have so little say about the course of his life.

We try to let him make choices when he can—what he wears, how he spends his day (for the most part), what activities he wants to participate in. We even let him hold his own monthly services in our barn where he claims Senior Pastor as his title. But he can’t rewire the barn, or buy scoreboards, or put up signs at will, which are all things he would like very much to do. Nor can he be on the nightly news (although he has managed to do this four or five times now) or invite police and firemen to our home, or send letters to public officials containing our bills, insurance cards, and other personal information. He also can’t drive across the country to comfort victims of shootings or disasters. (He has tried to get someone to drive him to Newtown, Connecticut, so he can comfort and help those involved in the Sandy Hook Shooting that took place a few years ago.) A noble desire, yes; realistic, no. But these are the kinds of things Jonathan wants to do.

His least favorite word is “no.” He longs to hear more “yeses” in his life. And try as we might, we never seem to produce enough of them.

One day last summer, he brought me a note that said: “not fun special need—–upset me.”

He knows . . . and to him “it’s not fair.”

Something else he finds “not fair” is that he rarely gets to lead. As I said, he lays claim to the title of “Senior Pastor” at his barn church meetings. He even signs his name, Senior Pastor Jonathan. Perhaps he wants to be more like his dad. But I also think he wants to lead.

All limitations change, however, when we hike. When we are out on the trail, Jonathan gets to be in charge. So, as we begin our journey, he takes lead. He simply moves out front, and I let him. If I inadvertently get ahead of him, he gently takes my arm to get my attention, points to himself and says, “Leader.” Then I step aside, and as I do, I feel a sense of pride. This is Jonathan, full of purpose and dignity, being who he wants to be. I am discovering that he is capable of leading and that I actually enjoy following him.

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The Trailhead

Every hike has a starting point. Many are marked with signs inscribed with the word, “Trailhead.”

Jonathan’s trailhead, at least the one I am cognizant of, was somewhat rocky at the outset. He came into the world after a long and arduous labor and delivery. From his first breath the attending nurses looked concerned. He had low muscle-tone, which was the reason his delivery was so difficult, and his doctor and nurses weren’t sure what else might be wrong.

By the time we were ready to leave the hospital, his doctor explained to my husband and me that no one knew what challenges Jonathan might face, but what we needed to focus on was not what might be wrong with Jonathan, but on how much was right.

We took him home from the hospital with one aim—to love him. We cared for him the best we knew how, and we prayed he would surpass his doctor’s prognosis. During his first year, Jonathan endured a barrage of tests to find out if there was a diagnosis that would fit his condition. Nothing concrete emerged. He was simply labeled with “pervasive developmental delays.” We were told Jonathan may never walk, or talk, or even grow for that matter. After all, he was only twelve pounds at one year.

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But Jonathan did grow.

And eventually he learned to walk, and even to run.

And now, he hikes—long distances, almost every weekend.

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His trailhead started out rocky. But eventually it lent itself to Jonathan’s uphill stride. He walks without a hitch. His gait is steady and confident. He never seems to have a misstep. He is cautious, but not slow or fearful, at least not as long as his feet are firmly planted on solid ground (but that’s for a later blog).

For now, suffice it to say, Jonathan has gone well beyond some of his doctor’s early predictions. He has traversed farther than some thought possible.

And, about him never learning to talk—he does talk. I am just learning to listen.

Why We Hike

Hiking is defined as walking for a long distance, particularly in the woods or countryside.

Jonathan loves to hike.

He likes the quiet of being out in nature apart from the noises of a bustling household, a crowded car, and talkative people.

He especially wants to escape talkative people.

You see, Jonathan’s biggest challenge is talking. He has other challenges. He was diagnosed with pervasive developmental disorder as a young child and he has experienced learning delays throughout his lifetime. But the challenge he struggles with most is not being able to speak clearly. That is what he wishes he could do like everyone else.

But because he can’t, at least not intelligibly enough for most to understand, he enjoys the quiet of walking.

Every Saturday he lets me know he’s ready for a hike. I know what he is saying. I know him well enough to understand. He wants some time alone with me, time when I’m not distracted with talking to anyone else, time when he won’t have to compete with talkers for my attention, time when I will just be with him.

So, we hike.

I go willingly, almost eagerly these days, because I want to spend this time with him. My life, although full, has a little more room in it now that my other children have launched into their adult lives. Now, I have more time for Jonathan.

Now, he can have more of my undivided attention.

And now I am ready to find out what he is thinking. I want to learn by watching him as he thinks and feels and engages with his environment.

What is he thinking about? What does it feel like to be Jonathan? What makes him happy; what makes him sad; what makes him feel alive? Why does he laugh, cry, or get angry?

In this blog series I hope to find answers to these questions. I will begin with what I know about Jonathan’s story from my perspective, the things I remember from his earliest days. But Jonathan is not a child anymore. He is an adult, a young man. He no longer needs or wants me to define his life. He defines it for himself. I hope to discover more about who he is and what he wants out of life from his perspective.

This is my aim as I hike with Jonathan.

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We live in a fast paced society. Walking slows us down. Robert Sweetgall