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July 1, 2020

Seashell

It’s been a rough morning. My seven-year-old autistic son has had two meltdowns back to back before 10 AM.
9 min read

 


 

It’s been a rough morning. My seven-year-old autistic son has had two meltdowns back to back before 10 AM. He was displaying not only great frustration and anger, but also (more heartbreakingly) great anxiety. As he cried and lashed out, I could feel myself starting to come apart at the seams. The tantrums have been coming hard and fast of late, and they are taking their toll on my husband and me, both mentally and physically. Even after the storms die down, we walk around like zombies afterward—our strength drained and our guard up, wondering when the next tsunami is going to hit.

This “walking on eggshells” extends to the weekend outings we go on to get our son (and ourselves) out of the house. We intend them to be times of fun and refreshment, but with so many unpredictable variables in the outside world, our efforts sometimes backfire. Overcome by too much stimulation, my son sometimes bolts this way and that, often placing himself in grave danger. We chase after him, trying to capture him by the hand or by clothing—tactics my son strenuously avoids. If repeated attempts to calm him fail and aggressive behaviors escalate, we have no choice but to bail and go home. By that point we are not only spent in terms of energy, but demoralized in terms of outlook. Everything seems so hopeless and unfair.

On one of the more successful trips we made to the beach recently, I picked up a seashell off the sand because its features jumped out at me. The shell, which looked like half of a giant clam, was covered in fingerprint-like markings. When I got home, I put it on my desk to consider more carefully. On the one hand, the seashell reminded me that I have given my life over to a very “hands-on” God. I am not alone in contending with my son’s autism, and have been reassured through holy text and human input that good will be brought out of his condition—that he will change and develop in ways I cannot foresee now.

On the other hand, after reading up on seashells a little bit, I was reminded that as beautiful as they are, they are a vestige of a life long gone. The occupants that used them as a home have died, leaving them to be washed up onto the shore with the other sea debris. In my depleted state I have wondered how this reminder of death relates to me now, if I am the exalted child the Scriptures claim me to be. Does the seashell speak of a type of death I have already passed through in my journey with God, or one that still awaits me as I wrestle with realities that far exceed my strength?

As usual, I went to the Bible for some answers and found that the gospel-writer and physician Luke records Jesus as saying, “If anyone would come after Me, let him deny himself and take up his cross daily and follow Me. For whoever would save his life will lose it, but whoever loses his life for My sake will save it” (Luke 9:23-24 ESV).

Not one of Jesus’s more uplifting statements, to say the least. His words constitute an invitation—no, an insistent calling—to participate in some type of personal execution. And an exquisitely painful one at that.

His words are also contradictory, marking death as the beginning point of discipleship, rather than the endpoint to all living enterprises that humans usually know it to be.

Finally, Jesus’s words sound imprecise; apart from Lazarus, whom he miraculously raised from the dead, most people expect to die only once, and not on the daily basis described here.

What could the master weaver of parables and proverbs possibly mean by this admonition that leaves us squirming in our seats?

What I can say for sure is that I feel like I die just a little whenever my son’s autism requires me to take extreme measures not required of most other parents. Things like exercising nonstop hypervigilance as if he were a toddler, trying to cope with physical outbursts which have become increasingly unwieldy, foregoing social events (like playdates and parties) that would prove too difficult to manage.

I also feel myself dying as I lay out extraordinary amounts of effort, persistence, and problem-solving just to get through the day. How do I acquire this developmental resource for my son, that taste of “normal life” for him? What about the haircut/dental cleaning/blood test he needs but will surely freak him out?

And on my worst days I feel like I’m already dead when I’ve done everything I can in a difficult area and have yet to see any payoff. For example, although I participated in countless hours of therapy with my son and followed through with endless forms of reinforcement, it was a full five-and-a-half years before I heard him call me “mama.” (To all you moms and dads out there still waiting for the miracle of speech, I feel for you.) Not that I wasn’t grateful to finally hear it. I just had to die time and time again as younger children around me called for their mothers while my boy’s lips stayed cemented shut.

This has been my reality for the past several years. Perhaps you, too, know what it is to drink a bitter cup each day, down to its very dregs. Maybe some challenge or circumstance has you dying by inches, as you try your hardest to survive—physically, emotionally, spiritually, financially, vocationally, relationally. Maybe you feel that your experience of God is mainly one of battle—that you’re always fighting (not skipping or ambling) your way towards Him.

Maybe you’ve come to see yourself not as the exalted child of the King but as the exception—the one He holds to a higher standard than everyone else and punishes severely when that standard is not met. If you were ever hated in a sustained way by an important person or persons in your life, you may suspect that God actually hates you too. It’s a death that your heart has known, a trauma that it may revert to in times of exhaustion and despair.

You know what the worst little-death is for me, besides the wedge it so often drives between me and my maker? It’s the feeling that my son has somehow become my enemy, the one who drags me to miserable places that I do not want to go. Dark places where I compare my burdens with other people’s blessings until I forget that he is as much—no, more—the victim of autism than I am. His daily burden of not being able to make himself understood (especially in times of distress) is assuredly, horrifyingly, the greater.

It is in the midst of this relentless, slit-your-wrist situation that Jesus has the gall to say to me, “Take up all your deaths­—big and small—and follow Me. I’m worth all the pain, and am, in fact, your only shot at salvation.”

Right.

Quite frankly, the only way that I can stomach this claim on bad days is to share my agony with a loved one into whose eyes I can actually gaze, whose voice I can audibly hear. Without that hands-on interaction with a fellow human being standing in the place of God, showing me what divine compassion actually looks like, I’m a dead woman.

I truly believe that those of us who have been afflicted up close and personal will need to experience love that is just as up close and personal to be healed and strengthened. Words on a page­, however sublime, just aren’t going to cut it for us. We are infants in the realm of trust, and must be carried on the backs of our betters, those whose journeys have made them wise and grounded where we are weak and wary. Those whose grasp of God is not steeped in the suspicion and suffering that make us fear He will betray us.

As I’ve pondered this conundrum—needing a Deliverer we cannot access because of deep distrust—a vivid memory comes to mind. Years ago, when I was working toward my PhD but contending with depression and anxiety, I was having a particularly bad night. Lying on my bed, I could feel my heart pounding out of my chest as panic overtook me. Talk about death—if you’ve never had a panic attack, it literally feels like you are dying because you can’t catch your breath. Your body starts to short-circuit, turning hot, cold, and clammy. You shake uncontrollably and feel like passing out. Your thoughts race from one catastrophic thought to another. You’ll do anything to shut it down.

During this episode, my husband­—a doctor like Luke—happened to be with me. I remember that he didn’t say much, but simply wrapped his arms around me. I also remember him placing the fingers of one hand upon my neck, as he applied firm pressure. After a few minutes of holding them there in that spot, my extreme “fight or flight” symptoms started to slow down, bit by bit. Soon, I was feeling significantly calmer, more like my normal self.

Later on my husband explained that he had used something called a carotid massage to lower my heartbeat. For my part, I marveled that something so simple as a touch could transfer me from one state to another. But now in retrospect I see that something else just as critical was undergirding that touch:  I was letting my husband do something he had never attempted before on me because I trusted him. He was my loving spouse and friend, yes. But he was also someone who had toiled long and hard over the years of his training and knew what he was doing as a result.

With this memory in mind I return to Jesus’s exhortation and find that it sounds very different to me. What I now hear is a truth-teller acknowledging that following him in this world can be hard—really hard. It may very well involve letting your fondest dreams die, leaving nothing but a shell of themselves behind. In my case, I constantly have to relinquish my desire to do typical things with my child—enjoy favorite books and movies together, arrange for friends to come over, go on excursions or even just out for an ice cream—and focus instead on raising the boy who requires drastically different things from me. Somehow Jesus’s reference to crucifixion comes across the same way as my husband’s silence during that panic attack: as a stark refusal to sugar-coat how costly our subjective experiences can be when we walk straight through our storms rather than trying to bypass them.

But the flip side of that refusal to sugar-coat or side-step our suffering is the promise that we will gain some kind of home with Jesus from which we will never be evicted. Not by any kind of death.

“Whomever loses his life for My sake will save it,” says the Savior, whose grueling years of training as an obedient, cross-bearing son reinforces my oh-so-fragile trust in Him. The reason that He gets to make such outrageous claims on my loyalty, asking me to endure daily battles and heartbreak, is because He has endured the same, to a degree I will never comprehend. By rights He should have lived a joyous, triumphant life as the exalted Son of God, rather than having to contend with every cruelty and woe the world could possibly throw at Him.

In fact, when I look up from my bitterness at the man who said yes to God at every torturous turn—all for my sake—I start to feel like a human being again. One with divinely imparted dignity that comes from God not asking me to do anything He hasn’t done Himself. And when I think about the incarnation as a whole, God taking on a crucifiable body, I am confident that my need to experience Him through the love of people around me is totally kosher. This whole demonstration-of-divine-love-through-human-flesh-and-blood was His idea in the first place.

As for gaining a home that becomes forever ours if we die our daily deaths with Jesus, three things come to mind.

First, let us recognize that sometimes the shortest route to God when we are stumbling beneath our cross may be by means of conversation. We may need to talk it out with another person, let them lay their fingers on our neck as we freak out. Remember, the first interaction between humanity and divinity in the Bible manifests as God walking and talking with Adam and Eve in the garden. If we were designed for face-to-face contact with God in ideal conditions, how much more do we need it in our tsunamis?

Second, let us seriously consider what death Jesus might be asking of us. I’m not talking about the afflictions of the world, I’m talking about handing something over to Him that we may want to grasp but is actually killing us. For me, I suspect Jesus may be asking me to cede my “right” to be angry with Him over my son’s autism. It’s not that I can’t be distraught over how hard it is (no sugar-coating, remember?). The question is whether I will allow myself to stay in a bitter place, instead of continually fighting my way towards God, perhaps by humbling myself and confessing my darkest thoughts and feelings to another.

Finally, let us remember that the last part of Luke’s quotation is actually a consolation—a promise that we do not wage our daily battles in vain. God has His hands on the outcome. Think about it—might not the resurrected Lord who died the worst death ever answer the death(s) in your life with unimaginable creativity and power? Not to mention, love? He sees what you are giving up and laying down every day for His sake. You will receive His life in return as you do that. No obfuscating that truth, either.

Let me leave you with another quotation from one of Luke’s companions. John, who famously laid his head against Jesus’s chest at the table, appeared to need that physical contact with his Savior as well. Perhaps that is why Jesus picked him to take care of His mother—because He knew this arrangement would be the next best thing besides being there Himself. (By the way, I wonder what the world would look like if we, too, strove to be that “next best thing” to those around us, even as we deal with our own burdens.)

Here’s John’s quotation of Jesus:

“I have said these things to you, that in Me you may have peace. In the world you will have tribulation. But take heart; I have overcome the world.” (16:33 ESV)

May God allow us not only to encounter His intimate, overcoming presence in the midst of our struggles, but also to minister it to others. Back and forth, face to face.

Amen.