How a Grumpy Old Man Paved the Way for Me to Love My Disabled Son

 

I watched Pete heave his aged frame from his walker, gripping the handle with one hand, using the other to keep his pants from tumbling to the floor while he reinserted his belt into its loops. I knew that Pete did not want help. He still possessed enough pride to put his own pants on. An airport security agent walked down the aisle, navigating belongings strewn across the floor. He came to Pete’s shoes, gave them a kick, and exclaimed, “I don’t know why people leave things laying all over my floor.” For a brief second, my heart was torn between the desire to demand an apology, and the realization that verbally chastising a security official was not going to get us on our airplane. I stayed in my seat, but that incident marks the moment in my life when I became an advocate for persons with disabilities.

Despite one or two bright spots, I have been very uncomfortable around people with disabilities for most of my life. I responded to my discomfort by attempting to eliminate it. I never deliberately mistreated someone with a disability. I just pretended they didn’t exist.

Several years ago, I took a study trip to Israel as part of a graduate degree program. In our group of about forty people was a man named Pete, a pastor. Pete was far from what you’d expect a pastor to be. He had retired into the pastorate after a career in the Navy, and his demeanor was more suited to calling down hell-fire on those swabbing the decks than it was to declaring faith, hope, and love from the pulpit.

Pete suffered from a number of health issues, and used a walker to get around. It had a flip-down seat that would convert it into a sort of wheelchair. Together, a handful of us pushed and pulled Pete across the Holy Land. It wasn’t always easy. Even at their peak, ancient cities were not designed with accessibility in mind. Their ruins sometimes proved a challenge for the most mobile of us. Pete somehow managed to take it all in stride, while still clearly articulating his displeasure with the state of his mobility. When the terrain proved too difficult, he would find some scenic vantage point and sit quietly while the rest of us continued exploring. But, if there was any possibility that he could make it up that three-thousand-year-old cobblestone ramp, he was going to give it a try, a try laced with all the grunts, grumbles, and complaints he could muster.

There is a city called Hazor. A few thousand years ago it was an impenetrable fortress overlooking a broad valley. An enemy challenged the king’s ego, and he marched his army out of the thick walls to fight below. Today, you can see the intact stone walls still ringing the city, and the blackened remains of the palace that was burned to the ground while left unguarded. When I met Pete, I was drawn from my carefully prepared defenses against those with disabilities, and while I played in the valley, my prejudices were destroyed.

One morning, a few members of our group began complaining about Pete’s grumpy disposition. I lost my temper. On paper, this was an adventure Pete could not do, but he did it. The fact that he was unpleasant while doing portions of it made him human to me. Yes, he was grumpy. This was exceedingly difficult for him. He had good reason to be unpleasant, but he still did it. At some point I realized that his disability caused more discomfort for him than it did for me. I acknowledge that is hardly the “Aha!” moment it seemed to me at the time. Pete altered my perspective on those with disabilities. These were not anomalies of nature, difficult to understand, and best avoided. These were normal people accomplishing hard things, doing their best to overcome the obstacles they faced. Not only could I understand that, I could honor that. We should all demonstrate such courage and determination. Today, I look back on those weeks spent pushing Pete around Israel, listening to his colorful commentary, and consider myself privileged.

If you want evidence that there’s a God who is active in the world, try this on. Four months after I met Pete, my son Isaac was born. Isaac has a disability. He uses a walker to get around. It has a flip-down seat that converts it into a sort of wheelchair. He is not always happy with the challenges that he must overcome, but he tackles them nonetheless. We had to make changes, in attitude and lifestyle, as Isaac unapologetically elbowed his way into our hearts, but discomfort with who he is has never been one of those struggles. Pete already burnt that palace to the ground.

 Further reflections on our my journey parenting a child with special needs can be found in Just Breathe.

Sometimes to Love What You’ve Got, You’ve Got to Mourn What You Don’t

 

I had dreams of having sons, big dreams of hikes and bike rides and swimming holes: journeys and adventures that grew larger and more daring with the boys. There were things I wanted them to do and places I wanted them to see, places on top of mountains. Some of those dreams have come true. My sons spend hours in the backyard rummaging under bushes, returning to the house muddied, jubilantly displaying whatever critters they’ve found. We’ve hiked to beautiful vistas, camped in forests and on islands, caught turtles and frogs, even rescued a one-legged duckling. Still, mixed in among all of those great memories is one perennial reality: these adventures are not what I had dreamed.

We’ve got four sons: Jacob, Caleb, Isaac, and Adam. With the arrival of each baby, the dream was put on hold. Babies don’t hike or ride bikes. They grow in other ways, and their developing capabilities become adventures in themselves. There is a blossoming excitement watching a child wake up to the world and experience those magical moments of learning to walk, run, swim, and ride a bicycle.

 When Isaac was born everything seemed fine. He did all of the things a baby should do. He cried, slept, rolled over, sat; but then he stopped. He didn’t crawl, didn’t cruise, didn’t walk. He’d sit on the living room floor as his brothers ran around him, and cry.

My wife took him to the pediatrician for his nine-month check-up and returned with the alarming news that Isaac was nearly blind. Somewhere between six and nine months he had developed cataracts in his eyes. While the diagnosis was frightening, the solution was simple: remove the cataracts and Isaac would be able to see. He would need to wear glasses, might need some vision and physical therapy, but he’d bounce right back to “typical.” We sat with a physician who told us by the time Isaac turned five no one would ever know there had been a problem. That didn’t happen.

Therapy ran from weeks to months with little progress. It took six months for Isaac to transition from sitting to laying, a year for him to crawl. Appointments grew from follow-ups with the ophthalmologist to consultations with neurologists, geneticists, and developmental specialists. Eye check-ups grew into MRIs and biopsies. Eventually, we sat in a room with a doctor who told us it was time to formally accept what we all knew: Isaac had cerebral palsy. Somewhere, in the midst of those chaotic days, a dream died.

I need to be clear. I don’t regret Isaac. I don’t regret the journey we are on, not one teardrop, not one hour sitting in a waiting room, not one second with my stomach perched at the back of my throat, fearing the doctor’s next words. Isaac is a gift. I don’t regret him; I celebrate him. But he was far from what I expected.

The dream died quietly, unnoticed. While we raced from appointment to appointment, it sat neglected in some dusty corner of my mind and slowly faded away. One day, I found a few minutes to breathe, went looking for some excitement, some inspiration, and found that my dream was dead.

Isaac is vastly more valuable than any imaginary potential I held in my mind, but to fully embrace what life with him meant, I had to mourn the dream that would not be. That doesn’t mean I resent Isaac. He was just new and unexpected, and to embrace the new, I had to say goodbye to the old. I had to accept that something in my life had changed, something had been lost, and I had to mourn that loss. I wasn’t going to through-hike the Appalachian Trail or ride the Continental Divide with my sons (I never said the dream was realistic). Even a hike to one of my favorite local overlooks seemed daunting. I had to bid those things goodbye, feel the slow ache in my heart at the loss of a thing loved; and then turn my back on that dead thing, look toward a new life, and love it for what it was.

Family life with Isaac is still an adventure. We go on hikes and bike rides, but they are shorter and harder than the dream had promised. Instead of supplies for an extended adventure, I carry my son on my back. My waistline is slimmer, and my thighs thicker from riding up hills with an extra forty pounds on my bike. As with so many other unexpected changes in life, the loss of the old thing has cleared the way for something new, never desired or imagined, yet far more significant that what came before.

Further reflections on our my journey parenting a child with special needs can be found in Just Breathe.

A Very Brief Primer on the Questions of Omniscience, Omnipotence, and Immutability

I recently had a conversation with a friend about what it means that God “never changes.” He was raised in the church, but never really talked through these issues. He knew that God is all-knowing (omniscient), all-powerful (omnipotent), and never-changing (immutable); but really, what does that mean? For him, and you, here is a very quick primer on three ways Christians have answered that question.

These are broad overviews of four ways of thinking. They are generalizations, each of which represents a dozen related viewpoints with their own nuances and variations. Before someone jumps in with a “well, actually. . .” If you have that level of study, this piece of writing isn’t for you.

Also, there are many more answers to this question than the three I present here, but I believe these three answers fall well within traditional Christian orthodoxy. There are folks within each view who think all the others are going to Hell, but I let my umbrella provide a little more dry ground than that. And, yes, each view has a dozen or more Bible verses to support it. These are all “biblical.”

Calvinism

Regarding omniscience, Calvinism argues that God knows everything, because he determined everything that would happen in advance. Every moment of every day, every decision, has been decided ahead of time. God knew what you would have for breakfast today before you were born. God knows everything because he has planned everything to work together toward his end goal.

How does this impact omnipotence (all-powerfulness)? God possess all power, he created, directs, and controls everything. He has all power.

How does this impact immutability (unchanging)? God never changes in any way. His character remains the same, always. God never questions himself, never changes his plans, never changes his mind.

How does this impact human free will? Calvinism asserts that humans have free will to make their own decisions, but – I’ll be honest – I’ve never heard a really compelling explanation of how.

 

Arminianism

This view also affirms that God is all-knowing, but rather than dictating every moment and every decision, God’s knowledge extends to every possible outcome of any decision. While he may not know what we will do, he knows what will happen regardless of what we do. Also, while we have the freedom to choose any path, God’s encompassing knowledge often allows him to predict our actions, while still allowing us the freedom to choose.  For example, I know that my son will never ask for pancakes for breakfast, because he hates pancakes; yet, he has the freedom to request pancakes whenever he wants.

To summarize: God’s knowledge extends to every possible outcome of every possible decision, spanning all of time. His power allows him to work with our freedom to direct history towards his final, decided outcome. All paths eventually lead to him, so we are free to take any path we want. God’s character does not change, nor do his plans. He does demonstrate some flexibility in the way his plans are achieved.

Open Theism

Open theism also affirms that God is all-knowing, all-powerful, and unchanging. God possesses knowledge of all that exists and has ever existed. However, the future has not happened yet. It doesn’t exist. It is impossible to know what doesn’t exist. Therefore, at any moment in time, any decision a human faces, there is the possibility that God will be surprised. As in the Arminian view, God knows everything about us. He is often able to predict what we will do in a given moment, but we still have the freedom to choose. More than that, he doesn’t know where this decision will lead us.

Being all-powerful, God is able to respond to our decisions on the fly. He can adjust and adapt his plans to work towards his goals; but we have the power to resist and frustrate those goals. God doesn’t get what he wants all the time. While I don’t fall into the open theist camp, I think this is a compelling answer to the problem of evil and pain. God has a plan for where he wants the world to go, but gives us the freedom to make our own plans. We are invited to work with God to make this world a better place; but allowed to be selfish jerks, and he works with that as well.

This is a dynamic view of God, his character never changes, but his plans are constantly changing. This is a God who has the knowledge and power to adapt to the situation.

 

Throwing Down My Marker

Because some folks in the world can’t read an author without knowing where they stand, I’m in the Arminian camp, with some sympathy for Open Theism. However, I don’t believe this is a salvation critical issue. While I might have strong disagreements with those in other camps, or even within my own camp, these are all members of God’s family.

Conclusion

The picture attached to this post is AI generated. It's a picture of the sun setting over Bryce Canyon. Bryce Canyon faces east. It's impossible. That's what this post is, a discussion of impossibility. It is fun, maybe even important, to discuss the attributes of God, but in doing so we need to remember we are discussing things we can't understand. A seasoning of grace is vital.