A Talk

This week, I partook in two of my greatest loves: public speaking and flying redeye.

(To quote Julianna, (who was quoting Calvin and Hobbes), sarcasm will get you nowhere.)

About that…Julianna came across this phrase while reading with Steve. She asked what it meant, and he explained. For some reason, he thought that she’d have an opportunity to use this phrase on me.

S: So, when mommy says something sarcastic, say it. Wait for the right time – there’s no rush. Wait for the perfect moment – it will be funnier that way, OK?

J: OK.

seconds pass.

J: Mom, come here!!

I run over.

J: Mom, SARCASM WILL GET YOU NOWHERE!!

(I digress, but it’s a funny memory. And I think that sarcasm is pretty great.)

 

Anyway, after work on Wednesday, I took a redeye to the east coast so that I could talk about Julianna.

The event was the Tenth Annual Pediatric Bioethics Conference at Wolfson Children’s Hospital in Jacksonville.

This was the title of my talk.

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I came prepared.

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And this was my name tag.

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I was asked to share our story and talk about how we let Julianna participate in our medical decision making.

I had three main points.

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Listen

One of the reasons I never wanted to go into pediatric anything is because I thought that babies and young kids couldn’t tell you what’s wrong. Adults, I thought, were much easier to figure out.

I was an idiot.

(The other reason I never liked pediatrics is because I don’t think that kids should get sick. That worked out well, didn’t it?)

Kids communicate with us all the time — sometimes verbally, often nonverbally.

Julianna was incredibly articulate. She told us — with words — that she did not want to go back to the hospital. But all along, she was communicating with us in other ways. Her body spoke to us in with its decline. Her eyes sparkled when we went into her magical world (“Let’s play!”) and filled with tears when we asked too much of her body. They expressed everything we needed to know.

Hospice

It’s not giving up.

It gave us more time, and better time.

No Judgment

Though most of the response to our story was positive, we were also criticized by some who felt that we didn’t make the right decisions, and by others who felt we gave Julianna too much input into those decisions.

We made our decisions out of love, and with the support of our medical team.

And unfortunately, we are not alone. For all the parents who have to make impossible decisions, please — no judgment.

 

And if there is:

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Remember:

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