Terrible Conversation, Part II

conversationGiving a child bad news hurts on every level. Integrity tells us to be honest, realistic, straightforward. Nurturing tells us to soften the blow. Getting the combination right means compromising both.

When we had to tell our daughter Sammi just before her fourth birthday that she had been diagnosed with an inflammatory disorder called eosinophilic esophagitis, we did it in an age-appropriate way that, thankfully, also forced us to simplify the problem for ourselves. The new diagnosis meant a host of food restrictions that would change over time, but we focused on the first six weeks that would exclude dairy, eggs, soy, nuts, and wheat. I wrote about that conversation in a previous post:

We explained that we had good news; we now knew why Sammi’s food kept coming back into her mouth. Her esophagus was sick! We drew a body on paper, showed them where the esophagus was, drew a frown on it. We talked about allergies, about our friend’s daughter with celiac disease, about feeling crummy and then feeling better. We brought out the list of allowed foods and cheered along as favorites were listed.

At that young age, she was hardly able to comprehend it. Sammi ate what we gave her, followed the rules, and over the course of the next three-and-a-half years, endured more than a dozen endoscopies. She did everything we asked. She even participated in a barium swallow study and a strange and very uncomfortable CT scan without ever asking us why.

Sometimes, I feel horribly guilty that she never asked why.

Honestly, why was she so obedient? As we began to recognize the gravity of the situation — that her diagnosis of eosinophilic esophagitis was wrong, that we’d been listening to doctors who had never fully read her chart, that the problem was actually structural and could only be resolved with major cardiac surgery — I felt worse and worse about how compliant she was and how silent we were being. The power we had to manipulate her world felt unearned. We had failed to protect her, and still, she trusted us.

So, we waited until what we felt was a reasonable time, and we told her about the surgery she would have.

We had calculated the conversation as best we knew how. We sat her and her older sister down and told them that we finally, finally had an answer about why Sammi’s food came back up into her mouth when she ate. We described the way her esophagus was twisted, the way the food got stuck going down and sometimes wiggled up again, then down again, then up again, and that was why she couldn’t eat as quickly as other kids. We  phrased this news as a wonderful, exciting discovery. It made my teeth chatter with nerves to talk about her tangled anatomy this way, but I set my jaw and did it anyway.

And then we brought up her heart surgeon — the one who had helped her when she was a baby. There was family legend surrounding him and the way he had fixed Sammi’s aorta, and so his name was familiar to both kids. “He can fix this too!” we exclaimed, our eyes bright and smiles plastered on our faces. “And,” we said, our eyes darting toward the living room, “you’ll be needing to rest a lot after the surgery, so we thought our family could use an iPad. It’s on the coffee table.”

“An iPad?!” Sammi and her sister squealed, “We got an iPad?!!!”

They ran off to see it, and the terrible conversation I’d been dreading for months was over. I felt dirty and exhausted. The iPad was a calculated distraction. We had eight days until the surgery, and we knew that the iPad could cover most of them. That expensive gift was less of a bribe than it was a balm. After all, we knew that Sammi would comply with anything we needed her to do.

She trusted us.

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6 thoughts on “Terrible Conversation, Part II

  1. That is a heart wrenching story. You are doing a wonderful job and there is no way you could have known the diagnosis was wrong. Her trust is well placed in you.

    • Thanks, Theresa. I know that I couldn’t have guessed at what was really happening — all these years later I am STILL shocked! — but it still felt awful to continue putting Sammi through all of this. You are very sweet — thanks for saying this.

  2. That is a tough conversation and it sounds like you handled it very well. My son has had two major cardiac surgeries as well. I will be praying for your daughter and family as you walk this out. So glad I came across your post from Love That Max.

    • Jody, I’m glad you found me too! My daughter’s surgery was in April of 2014, and she came out of it well. Stay tuned here to read in more detail about how it went. How is your son? And how are YOU? It’s hard watching our kids deal with all of this!

  3. […] There were so many things to which we had to say “no” in the weeks after my 8 year old daughter, Sammi, had major cardiac surgery. […]

  4. […] however, it has been more than three years since the surgery that finally liberated my daughter’s esophagus. I no longer hear her cough and wonder if she can’t breathe. I don’t have to make […]

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