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: 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.
I came prepared.
And this was my name tag.
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.
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.
It’s not giving up.
It gave us more time, and better time.
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:
35 thoughts on “A Talk”
Thanks Moon and Julianna- by being courageous and thoughtful.
Sent from my iPhone
Just beautiful! I’m sure your speech was a great one. It involved a very special girl!
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!
As a picu nurse and momma of my own special girl, I love every bit of this!
there is a book … in you
Love you J. Proud of you, Michelle.
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 💟 #LOVEISASUPERPOWER
That was a beautiful speech, made me cry.
I am awed by your courage Michelle.
🙂 it was a lot easier than our grand rounds, Karen. 😏
Wow, that brings back some memories 😂
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.
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.
This is good. Thanks for being brave and going up to share, unnie.
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.
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!
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.
Hi! Hope you and your family are doing well. I will be emailing you by tomorrow sometime.
email sent 🙂 to email@example.com I hope all is well and i hope you and your family are having a good day.
A fan request…. write another entry. I gave someone CPR … well… attempted to on nov 6 years back and it is just hard seeing that date as your last entry for so long. You are SO my favorite blog writer, without doubt your blog is the #1 on my reading list. So mostly just saying hello to you and your awesome family, but honestly, it would do my heart good to see an entry that was not dated nov 6. To get personal, i do not believe in a higher being, so numbers also are random …yet as they say most humans can not accept that the universe is all random so we have to make some type of sense to the universe, to put things in order. Meh… im no scientist but im pretty sure i would side with science … most of the time anyway. Not every time tho 🙂 P.S So yeah, prolly the holiday season will b difficult, i know you been through 1 so far so this one should hopefully be easier, all i know is i love and support you all, so hugs of support to you Michelle, Steve and Alex! 🙂 Finding the joy in this holiday season is EXACTLY what J would want…so do NOT give up on the idea of possibly finding joy. 🙂 okay?
I hope you and your family had a great xmas or holiday season. (Well, as great as it could be, goes without saying.) Into a new year, and just because you can not see someone it does not mean that they are not there. So go with a positive spirit, look at the new year head on. Look at it with positive spirits. Oah and write something sometime, Michelle 🙂
Happy New Year to you all. As you enter this year, you are no further away from J … she is somewhere, where only the passed know. Start the new year out right… be strong in spirit, bold, creative. J would want you to feel…to experience joy and to feel alive. I know that you have been through such trauma…your whole family has, that it is hard to feel … but do it anyway. Seek Joy. 🙂
Hope everything is going okay, but at the same time i am super worried that something is wrong cuz your public fan base has not heard from you, Michelle. And we are worried. So sue us but we are. 🙂
It is okay, i have been quiet for like months at a time before 🙂 Stay Strong, Michelle, Steve, Alex, Grandmother and all of your family are so awesome. Be there for each other. Lift each other up. 🙂
You are in the prayers of many.
i run into unicorns and pink often after J passed away… it always makes me smile 🙂 she left her superpower of love behind to share with us all !!! 🙂
Hi Michelle and all, hope you are doing well. Thinking bout ya.
Checking in, saying hi there and reminding you that someone cares.
Mrs. Moon: I think I deleted your ‘Juliannas’ email I received prior to this one and, I haven’t received any of your posts since about 3 months ago. I don’t know if the missed post was your farewell to all of us who have been following Julianna since your first posting about her but if not, please restore me back onto your list; I’m a retired granpa and Juliannas’ story and her belief in a beautiful after life touched me deeply; her comment ‘do you want me to wait in front of the house and in front of all the people so you can find (or see) me quickly’ just kills me every time I go back and read it.. I don’t think I’ll ever delete it. gives me great cause to thank GOD just about every day for my granddaughter..
I miss your writing… and I miss Julianna.
Hi Michelle and family, i hope you are all doing reasonably well. I saw there was some activity on here so thought i would post too 🙂 I hope you find unexpected joy today, no matter how slight. J always taught everyone to find the joy in life, and i’m pretty sure she meant always, not just sometimes? Take care.
Thinking of your family today. Seek some sort of joy today, because that is where the meaning is, and anyone would think that J would want you to find meaning. Stay Strong.
Hi! Just checking in to say hi to you and your family! For what its worth, someone was thinking about you and your family today 🙂