Narrating a Dying Child’s Life

Avery is the five-month-old daughter of Laura and Mike Canahuati.  She suffers from a rare genetic disorder that will take her life in less than two years.  In response to learning, on Good Friday of all days, that little Avery has Type 1 spinal muscular atrophy, her parents began a blog written from Avery’s perspective narrating her experiences, dreams, and desires.

I totally get this.  In 2009, also during the days leading up to Easter, our daughter Vivian was diagnosed in the womb with a fatal condition called anencephaly.  She was born in late September and lived for a little over 15 hours.  It was important to me during those months of pain and uncertainty to tell Vivian’s story, such as it was.  It was more than that, actually.  It was imperative.  I felt a calling, a desire from my depths to speak, to narrate, to give her life a meaning that it could not reach in reality.

Despite having been a literature major in college, I didn’t truly understand the impulse to tell stories until Vivian awakened in me the urge to narrate her life and ours.  Only by experiencing the sorrow of losing a beloved child and by putting that tragic experience into words did I come to understand and appreciate what it meant to be a father, what it meant to love without the constraints of time, what it meant to live in the face of death.  My heart goes out to Laura, Mike, and Avery; and I pray their stories illuminate their lives and the lives of those who hear them.

Kyle Cupp

Kyle Cupp is a freelance writer who blogs about culture, philosophy, politics, postmodernism, and religion. He is a contributor to the group Catholic blog Vox Nova. Kyle lives with his wife, son, and daughter in North Texas. Follow him on Facebook and Twitter.

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8 Responses

  1. Celeste says:

    Kyle, the thing I have always found the most amazing about everything you have been through is your ability to make the rough cards you were dealt into a beautiful and introspective view on a life cut entirely too short. You and your wife are amazing and strong, and through you, your daughter will be remembered forever.
    To Avery’s family, I hope you find comfort in your tough times.

  2. Rose Woodhouse says:

    Kyle, thank you for sharing this. Even though I haven’t lost a child, I understand about the need to tel a story. I’ve been meaning to read Kenzaburo Oe – it makes sense to me that his disabled child is the focus of his stories.

    I can’t imagine what you went through, and what Avery’s parents are going through. It’s important that you, and they, let us know.

  3. Shana Bertin says:

    will be praying for Avery & family. What a beautiful testament to the precious nature of such fragile lives!

  4. Jaybird says:

    This, I suppose, is one of the reasons we have God.

    Maribou and I are childless. A few years back, the marriage cat had grown old and got cancer and we “put her to sleep”, as the euphemism goes. Maribou and I were wrecked. Wrecked. Over a stupid cat! Nothing like a child! Nothing like one’s own flesh and blood and bone and sinew. Just a cat. I, an atheist, found myself comforted by the thought of a kitty heaven where it was easy to breathe, easy to play, easy to get brushes, and tunafish was bountiful and there would be no more pain… just the warm feeling of lying in the sun and waking to find yourself being kissed by someone who loves you.

    Over a cat.

    A stupid cat.

    I can only imagine that a child dying would rip a person to ribbons.

    • Mike Schilling says:

      You have no idea.

      And the best thing I can wish for you, or anyone else, is that that continue to be true.

      • Patrick Cahalan says:

        Of all the mysteries that continue to confound me, the mystery of how we continue having children is the greatest. And I did it, twice, thus proving that I am, at least, the sort of cat who can face the unknown, for all goods and ills.

        It’s a very odd thing, the wish that you die before your children. It is possibly the most selfish thing I can imagine, really… “Here, children: have the pain of losing a parent, because you can live through it, and I’m not so sure I can live through the converse.”

        Part of the back, ugly, deep part of my brain mutters that from time to time.

  5. Thank you for sharing this, Kyle. I actually lost a patient to SMA relatively recently, so I think it might be too difficult to read Avery’s story right now. But I know how very important it was for the family of my patient to tell his story as they said goodbye to him, and I share your prayers for this family.