I’m Not Allowed to Die

(And Other Lies I’m Trying Not to Live By)

Every now and then, one of our sons will express sadness over the future reality — in a best-case scenario, that is — of life without us. “I don’t want you to die,” one of them will say, apropos of seemingly nothing other than emotions running high due to a late bedtime, and I’ll be struck speechless because, well, isn’t that exactly what’s going to happen?

Except it’s not, because, you see: I’m not allowed to die.

It’s one of those phrases tossed around in the parenting groups I’m a member of online, one of which posted this recent nugget:

And one of my recent Facebook memories informed me that four years ago, this happened: “Tonight as he drifted off to sleep James said, ‘Don’t die before I do.’”

That’s some pressure. You think I’d eat better, maybe invest in one of those cold-water-therapy immersion tanks, or at the very least get some acupuncture, right? It’s on par with the well-intentioned but sorely-mistaken admonition that God only gives special kids to parents special enough to have them, which must come from the same part of the Bible where it says that when people die unexpectedly, it’s because God needed another angel, or that he never gives us more than we can handle. (Still haven’t found those verses, by the way. That god though? Sounds like an asshole.)

But these imperatives are self-driven too, at least the feeling that I can’t die — not before I’ve sorted what will become of my children, particularly our older autistic son, whose future, much like his past, seems not to have a handbook provided at birth or in the parenting section of any Barnes & Noble I’ve visited. Will he live independently? Will he find an understanding partner? Will he thrive? Will he defy the grim statistics that reflect a world still unaccommodating of his differences?

I’m not the only one looking to optimize my immortality options, but sometimes it feels that way, particularly in the isolating moments of life that tend to delineate my and my son’s experience from that of our peers. Events that emphasize the “divergent” in neurodivergent. Like a recent birthday party he attended. In my lexicon, birthday party is synonymous with emotional and existential crisis and has been since the first one he attended, at least a decade ago now, where he circled the perimeter of the event, casing the joint like a detective in his own attempt to stay regulated and be comfortable (a process I didn’t understand at all until … well, way too recently). Birthday parties haven’t changed much since then. Though he’ll now participate a bit more in the festivities, he still keeps to the outer edges and close to me. “I feel excluded,” he told me at the most recent party, and I struggled to work through that with him as I battled my own internal frustration and sadness at the truth of his observation.

A few days later, his year group at school headed on a trip to a nearby city. He took the bus with them, riding for three hours while I trailed behind in my own car. The arrangement, solidified after the same trip a year before, was that he would stay with his peers during the day then come to my hotel to spend the night with me. And it worked! He had a great time exploring government buildings and museums and sport institutes over two twelve-hour days. Then I picked him up and he processed the whole thing with me, using for the first time the phrase school mode, which he explained to me was how he behaves away from home. School mode is his word for what’s called masking, something autistics do to blend in with their peers. According to their personal testimonies and statistics, masking is a major contributor to depression, anxiety, and suicide. Cue another existential crisis.

The temptation, of course (as with most things) is to make it all about me — to take all the responsibility of his emotional and mental and physical well-being upon myself and make it all dependent how I handle everything. Which is on par with the same level of pressure as not being allowed to die. Which is to say, an impossible way to live.

Sometimes, though, I remember that there is a God and I’m not him. And in those moments — of desperation, of prayer, of terror, of sadness, of anger, of whatever it is that drives me to him after weighing every other option — I am quieted by the truth that this God is way more committed to my children than even I could ever be. And one phrase he keeps whispering to my heart recently is radical acceptance.

This idea is like a foreign language to me, much like the idea of grace was when I first began to hear of it from my seat in Hunter College’s auditorium at Redeemer’s East Side PM service nearly twenty years ago. Radical acceptance has, over time, incrementally soothed my soul and set me free, much as the message of has over the years of being a reader and then contributor here on Mockingbird. See, before grace I abided by a set of rules that made me feel protected and secure within their boundaries — until they didn’t. And though life (and parenting) are more nuanced than one phrase could distill them down to, I do think I have an idea of what God is whispering to me within those two words. When he calls me to radically accept my children, he’s teaching me to love like he does.

When you have a kid who’s different, they encounter far higher walls than the rest of us can imagine, microaggressions the rest of us may never see. They are constantly met with hesitation, disdain, or worse. For my son to be in home mode means to be wholly himself — where he is safe, loved, radically accepted. Nuances of parenting and discipline aside, I am called to be a port in the storm of a challenging life. And as I, painstakingly and with my own hesitations and walls, embrace this weighty responsibility, I am freed from thinking I am his only port, or his ultimate safety. Under the weight of responsibility, I learn to radically accept myself, my constant flaws and my own disdain, because they are no match for the grace that meets us both. A grace that a plan for us for this life, and beyond. Which I believe — but also … help my unbelief, you know?

As a woman I battle all the ways I’ve internalized a message that tells me to be small, to take up less space. To keep trying, and not die on my kids. In grace, I’m met with a different message: go ahead and die, for there is life beyond the million tiny deaths of this world. I am met with a love that demands not less space from me, but that stretches me beyond what I ever would have accepted had I known I was headed for it. I find myself becoming stronger and more vulnerable at the same time, the paradox of this direct correlation — strength and vulnerability — dovetailing with a faith whose paradox is reflected by a victory won from a cross.

Here’s another dubious phrase I’ve come to reject — that the important people in our lives bring out the best in us. I’ve come to find that, far more often, they bring out the worst. Then, like a doctor draining poison from a patient, they remove it and replace it with health. With wholeness. With mercy, and love, and forgiveness. With the depths of grief at birthday parties and the heights of cheering at basketball games and all the terrain in between. This “one degree of glory to another” that is so much different — and more — than I thought it would be. The real best.

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2 responses to “I’m Not Allowed to Die”

  1. Jason says:


  2. Suellen says:

    This is so beautifully written and so true. The last two paragraphs are pure gold. Thank you Stephanie!!

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