On Storytelling

“[T]he story of a mother having a baby [with] esophageal atresia is so heartbreaking”.

This is a tweet I came across this week while using the CEAN twitter account.  It angered me.  And then I thought about it.  What did this tweet say about the mother?  What did it say about the child?  Was I overthinking it?

Yes, certainly there are difficulties with being a child with esophageal atresia. Certainly there are difficulties associated with being a parent of a child with esophageal atresia. No, mum or dad after spending weeks in the NICU will suggest that it was an enjoyable experience.  But is it heartbreaking?

Many of us on this page and, who I’ve had the chance to exchange stories with since starting CEAN, have tremendous tales of perseverance and strength. To suggest that our stories are heartbreaking, or that the only aspect of our stories that matter is the heartbreak, is to deny the many joyous parts of our lives.

This tweet made me think that perhaps if we were able to share more of our stories with one another and with the world then we would be able to change this perception about our lives. In that sense, CEAN is relaunching the blog portion of our website (canadianeanetwork.org) to showcase stories, trials and triumphs of people with esophageal atresia/trachea-esophageal fistula and their parents. Perhaps instead of seeing these stories as heartbreaking we could see them as heart-bending; instances where we may have been hurt, anxious or distraught but which, ultimately, we overcame.

Will this change perceptions?  I don’t know.  But we can try.

-Quinten

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2 thoughts on “On Storytelling

  1. Hi quinten

    Came across your story on the web page , I too was born with aesophigalel atresia, fistula
    I am 47 years and I have never spoke or known anyone who was born the same , I had so many questions that could never been answered and fears that have always been with me
    Even my parents who are in there 80s now never could give me any answers as they were only learn the basics! Which I found very frustrating at times!
    God bless my mum as I was the youngest of 6 children so I was labelled a special sister lol
    Which caused me lots of fears & anxieties still to this day, from been 15 I suffered with anxiety attacks and depression later in my life, 3 years ago I had a breakdown obviously through my childhood & 2 divorces from abusive & mental abuse x
    I have been married again for the last 8 years to the most amazing man,

    I know this message will be quite frantic
    But I feel so great full to find someone who has written about a day in the life of us with the abnormality.

    I love my life now and always felt thankful that we can say we are survivors

    Be great to hear from you with some of your experiences growing up & to adjust into adulthood

    Michelle

    • Hi Michelle,

      I am so glad that you have connected with us! 🙂 I would love to chat with you and hear more about your story. Perhaps we could connect via email. I am always interested in hearing the experiences of other adults with EA/TEF. Most of the folks who connect with CEAN are parents who have children with EA/TEF but we do have a few adults as well.

      I was in much the same situation as you before starting CEAN. I am 23 now but at that point 4 years ago I had not met anyone else with EA/TEF and had many questions myself. So glad to hear that you’ve persevered and found a wonderful fellow to share your life with.

      -Quinten

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