Truly, deeply


Cynic that I am, the self-help genre typically leaves me cold.  Advice that sounds good in theory often breaks down in practice. Rarely can inspirational books or how-to articles speak inclusively to the nuanced circumstances of individual lives; people are just too messy, too complicated for that.  And self-improvement, of course, is no picnic, letting go of long-held ideas even harder.

Unsurprisingly, however, I couldn’t resist an article from O Magazine entitled “Life’s Not Fair,” in which author Martha Beck contends that it’s possible to face this fact with grace.  We just need to stop expecting life’s vending machine to mete out justice simply by inserting virtue.

Having never considered myself particularly virtuous, I continued reading anyway.

“Try this,” the author encouraged.  “Define virtue as living in perfect alignment with what you most deeply feel to be true, and happiness as an upwelling of joy that arises directly from this alignment, regardless of external factors.”


I was stumped already.  What I most deeply feel to be true?  What do I most deeply feel to be true?

I realized I had no answer.

Distraught, I posed the question to my husband.  Fortunately, he took my consternation seriously.

“I don’t think there’s just one answer, for anyone,” Andy reflected.  “But I’d say one thing I truly believe is that sharing our lives and our burdens with other people is always beneficial.”  Or something along those lines.

Well, that wasn’t so hard, I thought, relieved that meaningful truth didn’t necessarily imply a grandiose doctrine involving infinite faith, love conquering all, or everything happening for a reason.

This kind of question has actually troubled me for years, my inability to define, even to myself, what I “hold to be true” a source of secret shame.  Only a shallow, insubstantial person can’t state categorically the principles upon which her life has been built. Right?

Oh, I know with unwavering certainty that I love my children, that I would willingly die for them, but surely that doesn’t count. Every parent feels that way.  Loving our children beyond measure is a given, a freebie answer.  My devotion to my own doesn’t set me apart, define the deepest part of my soul.

Yet I don’t recall being concerned with such questions before I had children, back when a bountiful, contented life seemed inevitable, when, with appalling arrogance, I believed the future would unfold precisely as I pleased.

In fairness, I had no call to imagine that my life would one day collapse so dramatically.  Who really does?  Besides, by my late twenties I’d already faced what I thought would be the defining challenge of my life, too naive then to understand that our lives rarely hold just one.

In the aftermath of Daniel’s diagnosis, self-reflection became an indulgence swept away by adjustment to a truth no parent is prepared for, which no platitude or pep talk or insipid essay about Holland being as good as Italy can resolve.  In the process, the groundwork of my life fell away, piece by piece: My storybook marriage fractured with the weight of our grief; my father — my safe harbor, my rock — died when Daniel was barely six years old.  And my mother, the woman who did it all, apparently met her match in Daniel’s disorder.  “I don’t know anything about autism,” she told me.  “You’re going to have to handle this on your own.”

There was no truth left to bank on, except my furious love for my children.  And I was failing them both.

All the research and resources and therapies, the saccharine stories of autistic prom queens and unlikely basketball stars, couldn’t ease the crush of despair, the fact that my son’s life had been stolen, that his condition would last forever.  This was my truth, however I tried to twist it.

That didn’t stop me from seeking a way around it, though, pursuing with fervid intensity a tenable explanation for the inexplicable; that one, precise set of words that would reconcile something so devastating.  I talked to people incessantly, my needy desperation driving many of them away.  A succession of clergy and therapists, friends near and tangential, self-help groups, the support group I formed myself, the hapless clerk at the hardware store — surely the path to acceptance could be found if I kept asking, if I demanded one hard enough.

It didn’t work that way for me.  Despair turned to rage, to bitterness, to final, awful acknowledgement of the truth I knew in my heart all along: the explanation I sought was not to be found.

And yet the most valuable answer turned out to be no answer at all.  Huddled, weeping, in the office of my longtime pastor, a man I’ve known now over 40 years, I poured my sorrow at his feet, imploring him to explain the vagrancies of God’s will, the arbitrary nature of his benevolence, his healing, his grace.  If anyone could answer the “why” of Daniel’s fate, it would be this man I’d trusted since I was ten years old.

He listened to me for a long time, hands clasped between his knees, then looked me straight in the eye. The pain on his face mirrored my own.

“I don’t know,” he told me quietly. “Kristen, I just don’t know.”

Did he understand the power of that admission, the relief he endowed by telling me that truth?  For if this man, who was supposed to know the answer, could concede that he did not, maybe I could bear living without the answer, too.

I no longer probe that wound so relentlessly.  I have my answer: I will never know.

We try so hard to finesse things, to make palatable the most bitter of truths, find an angle to bridge the gap of all circumstance. Yet those are rare on the ground.  As my husband puts it, “Everyone has their Waterloo.”  No matter how we spin it, the truths of our lives remain true.

My son has autism.  His condition is lifelong.  This is true, and there is nothing I will ever read or hear or contrive that will make it less so.

Acknowledging this, though, has softened the strain, the exhausting search for a way around it.  I continue to grieve, more often lately as we live through another transition with our son.  I will never stop mourning what he has lost.  Trauma changes us.  Long-standing crisis and uncertainty leaves us watchful, guarded, suspicious of the things we once counted upon, even during periods of relative calm.  Profound disability in our children warps the people we once thought ourselves to be, or planned to become, one day.

Other parents have endured this more gracefully, and I’m often ashamed that I can’t behave as they have learned to do.  But I’ve yet to meet one of them untarnished by the indelible mark of this sorrow, this regret, this truth.

Yet in fellowship with them I know growth remains possible.  Andy, for instance, playfully reminded me yesterday that six months into sharing this blog I declared, out of the blue, “I’m really tired of being a bitch.”  I haven’t made a convincing recovery on that front, but the possibility of healing exists, one faltering footstep at a time.

I know also that parenting has brought me the most profound joy I’ll ever experience, even as it tears me apart.  No grief is more powerful than the beauty that shimmers from the remnants of the life I once thought was mine.

The answers I craved so desperately still haunt me sometimes.  But I can go forward without them.

Hope is powerful.  Joy remains.

This, at least, I know is true.

  1. Kristen
    I can’t begin to tell you how inspiring I find your writing. It’s poignant, heartfelt and hits so close to home even though I do not have a child with autism. You transfer thoughts and emotions across invisible boundaries so well it always takes me time to reflect and recover after reading your posts. Thank you so much for sharing!!

    1. Thank you for your kindness, Melissa. So many of the experiences with autism that I write about evoke emotions that we all share, regardless of circumstances. I’m glad you feel they are inspiring. I really appreciate you reading!

  2. Kristen you are such a gifted writer! Your soul pours through your words….

    1. Thank you for reading, Jennifer, and your kind words.

  3. For me, what makes this life possible is the people who stand with me and witness it all, too. You always look right at it, see what I see, aren’t afraid to say that you see it, feel it too. Your posts are so brave, so good. Thanks again for this one.

    1. Ellen… yes… Your comments mean so much to me, because you are living this too. Thanks for being one of my witnesses. xo

  4. Kristen, Thank you so much for your voice in this blog. You could teach a writing class. Your rule #1 & 2 would be “Tell the truth.” Just as it was bracing for you to hear it from your pastor, your readers feel the same.

    1. Thank you, Bob, so much, for your support of this blog and my writing. When I started I was afraid of alienating people with too much “truth.” Your comments are so validating, and all the more meaningful because you are living this, too. Thanks again.

  5. This is such a great post!! Thank you Kristen for sharing your blog with me!!!

    1. Thank you for reading, Randi, and sharing your own story with such honesty. I look forward to following your journey!

  6. […] time I’ve set aside certain unanswerable questions, stopped demanding an explanation for Daniel’s autism, which, if granted, would change nothing. […]

Leave a Reply

Your email address will not be published. Required fields are marked *