“[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.