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,Β 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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18 thoughts on “A Talk

  1. Julianna would have approved of your color choices!

    And your Mission.

    I suspect the Q&A was interesting.

    Writing this despite a !ump in my throat and a tear in my eyes.

    And a Smile.. Love IS a Superpower!

    πŸ’œπŸ’œπŸ’œπŸ’œπŸ’œ

    Like

  2. I love this Michelle! Your courage is humbling, and so amazing. So many are blessed through your triumphs, and also through your pain. We love you, and pray for you πŸ’Ÿ #LOVEISASUPERPOWER

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  3. First off – congratulations on facing your fears and giving the speech. Your message needs to be heard.

    Secondly, I loved it. I don’t think your talk should be limited to children. I volunteer at a care center and I see the same thing with seniors. There is a push for treatment rather than accepting hospice – Chemo for a 95 year old? Really?

    Faith helps many understand that God is the ultimate healer. In this life we are plagued with illness, hate and violence. In the next life there is wholeness and love.

    Thank you for being a voice to the voiceless.

    Like

  4. Wow, this was so beautiful, in every way. I loved the “Tone” in this blog, very different….I felt your Passion again (!), “that Michelle wit”, that only Julianna brought out in you(!), doing and talking about someone (Princess J) that you Loved with all your heart! I loved the outfit, all the “Pink and Sparkly”, Julianna would approve and be so PROUD of you! Your 3 main points (Listen, Hospice and Zero Judgment) were “Spot on” ! This is priceless! Somebody out there my dear friend desperately needed to hear those 3 points.

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  5. So nice to read from my favorite writer of all time. I thought that maybe you quit the blog. And WOW there is another oct 27th that i did not see yet. I will read that next. I hope speaking was healing for you, and i truly hope that the people there were kind to you, Michelle. I can’t help but think how beautifully brave you were to get on a plane and go speak at that conference. Brave because it must have been sad at times… and you knew going into it that it would be. And yeah, Michelle, people should really listen to you, because you have been through that and you know… so much.
    I hope everyone is doing okay…hugs to all of you.

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  6. Sooooo sooooo proud of you and your family……i love Juliannas last quote…..Christ’s example is the best medicine….turns bad guys good! Love to you all!

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  7. So yeah this is unusual but the Kingdom of Joseon in Korea back in the day… i believe if you study that period a bit you will find comfort. I can’t explain it, i literally can not. I had the feeling to tell you that though. Thanks.

    Like

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