Today I read a New York Times column that made my blood run cold. It was from two days ago, written by Emily Rapp, a woman who happens to live in Santa Fe, New Mexico, as I do. A woman who is a mother, as I am. A woman who has faced pain I cannot even begin to imagine.

She writes:

MY son, Ronan, looks at me and raises one eyebrow. His eyes are bright and focused. Ronan means “little seal” in Irish and it suits him.

I want to stop here, before the dreadful hitch: my son is 18 months old and will likely die before his third birthday. Ronan was born with Tay-Sachs, a rare genetic disorder. He is slowly regressing into a vegetative state. He’ll become paralyzed, experience seizures, lose all of his senses before he dies. There is no treatment and no cure.

How do you parent without a net, without a future, knowing that you will lose your child, bit by torturous bit?

I stopped cold when I read those words. I have four healthy daughters, and I can still find things in my life to complain about? I have four daughters who are beautiful, intelligent and above all alive, and I, ungrateful wretch that I am, can still think that any of the petty troubles of my life can be called pain?

When my eldest daughter was an infant, I used to have nightmares that she was dying or had died, and I would wake, gasping for breath, choked with tears, and rush to her bassinet to make sure she was still alive.  Having my first child at an age where I had given up hope of having one, having miscarried two, I never took Elizabeth for granted, and counted my blessings every day.   As time passed, and despite my age I had three more children, I stopped being so fearful, so grateful, and began to take my blessings for granted, as human beings are wont to do.

Even if Emily Rapp has three more children, she will never take them quite as much for granted as I take mine.   When I Googled Emily Rapp, I learned on her website that her life of pain did not begin with her son’s fatal illness.  Kirkus Reviews writes of Rapp’s book, Poster Child:

Born with a congenital bone and tissue disorder, the author had her left foot amputated when she was four and was fitted with an expensive, ugly prosthesis; at eight, after several operations, her entire left leg was removed. Rapp devoted her childhood to excelling, to being brave and smart…She loved being told that she was an “inspiration.” But as she entered adolescence, Rapp became more self-conscious. In particular, she worried that she would never catch a man. (She writes with elegance of losing her virginity.) Granted, she had good material to work with. Most people just have to grapple with getting the condom packet open; she had to decide whether or not to remove her leg. During college, her stoicism began to fray, and she wavered under the burden of her own attempts at perfection.

My attempts at perfection involve petty things things like trying to regain six-pack abs after four c-sections. I am humbled and ashamed by my own shallowness as I contemplate what Rapp has endured. And yet, despite the knowledge that others have suffered so much more than I, that I ought to be grateful for my two legs and four children, I am still capable of feeling my own insignificant troubles as tragedies.

For that is the way of mankind. We can tell ourselves that we are fortunate, that we ought to be grateful not to be amputees or terminally ill with cancer or political prisoners tortured by third-world tyrants. We can tell ourselves that our problems are small ones, that we should be grateful not to have real problems like Emily Rapp and the soldiers getting body parts blown off in Iraq and Afghanistan, but somehow those traffic jams and home repairs and bratty kids annoy us anyway. Even with the thought of Emily Rapp fresh in my mind, I could still get irritated today when my daughter Tess threw her ponytail holder out the car window and her ballet teacher wouldn’t let her come to lesson with hair down. My wasted money on Tessie’s ballet lesson was so trivial, in the larger scheme of things, and yet it still rankled.

Pain is integral to the human condition, and when we don’t have the real deal, we manufacture it, from the Penitentes of northern New Mexico to young people covering their bodies in tattoos to women who love the wrong kind of man, time after time.

Love and pain walk hand in hand, for Emily Rapp would feel no pain over her son if she did not love him.  Without the risk of pain, there can be no love.  If I had not loved Elizabeth, I would not have wept at the thought of losing her.  Whether a parent’s or a lover’s, there is no love without risk of pain.

For a mother, is it better to have felt the suffocating, all-consuming love for a child that I felt for my infant daughters and Emily Rapp feels for her infant son, and then to suffer the heart-wrenching loss I have known only in nightmares, than to have never known the joy of motherhood?  For a lover, is it, as Alfred Lord Tennyson said, better to have loved and lost than never to have loved at all?  Or is it better never to have felt that exquisite ecstasy than to have felt and then lost it, feeling as though your heart has been torn out of your chest still beating?

It has been more than half a year since I’ve written a blog post, for both professional and personal reasons.  Professionally and politically, I cannot imagine that anyone could object to this one.  Personally, I have been reluctant to write anything at all since my divorce earlier this year.   When you’re a church-going, Roman Catholic, conservative Republican, you’re expected to walk the walk and not just talk the talk.  I have felt as though my divorce made me a hypocrite, unworthy of talking the talk, or blogging the blog.

Emily Rapp gave me the courage to break my silence.  If she can bear the pain of losing a leg and losing her son, surely I can bear the shame of failing to live up to my ideals.

Comments 5

  1. LINDA wrote:

    What else is there to be said, nicely put.

    Posted 18 Oct 2011 at 6:27 pm
  2. Bonnie Ford wrote:

    I measure every Grief I meet by Emily Dickinson
    I measure every Grief I meet
    With narrow, probing, Eyes —
    I wonder if It weighs like Mine —
    Or has an Easier size.

    I wonder if They bore it long —
    Or did it just begin —
    I could not tell the Date of Mine —
    It feels so old a pain —

    I wonder if it hurts to live —
    And if They have to try —
    And whether — could They choose between —
    It would not be — to die —

    I note that Some — gone patient long —
    At length, renew their smile —
    An imitation of a Light
    That has so little Oil —

    I wonder if when Years have piled —
    Some Thousands — on the Harm —
    That hurt them early — such a lapse
    Could give them any Balm —

    Or would they go on aching still
    Through Centuries of Nerve —
    Enlightened to a larger Pain –
    In Contrast with the Love —

    The Grieved — are many — I am told —
    There is the various Cause —
    Death — is but one — and comes but once —
    And only nails the eyes —

    There’s Grief of Want — and Grief of Cold —
    A sort they call “Despair” —
    There’s Banishment from native Eyes —
    In sight of Native Air —

    And though I may not guess the kind —
    Correctly — yet to me
    A piercing Comfort it affords
    In passing Calvary —

    To note the fashions — of the Cross —
    And how they’re mostly worn —
    Still fascinated to presume
    That Some — are like My Own —

    Posted 19 Oct 2011 at 1:20 pm
  3. Melissa wrote:

    This hit you right where it would most mothers, right at the heart. And most days our hearts get hung up on the petty. I know mine does. But thank God for the flashing warning lights of stories like these that serve to signal our trivial irritations to what really, really matters. Thank you for sharing your life and the contrast you observed. Also, for being brave to share where life really has you right now. Whether we are walking or stumbling or running, it’s still life. God bless you and your girls : )

    Posted 20 Oct 2011 at 3:07 am
  4. MIT wrote:

    Read this awhile ago but it has stuck in my mind especially as I literally work myself over so much that is no more than icing on an already beautiful cake.

    Posted 07 Nov 2011 at 5:17 pm
  5. Julia wrote:

    This really gives you perspective. The things I complain about…how trivial they seem.

    Posted 16 Nov 2011 at 4:34 am

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