Almost two years ago, a family member (who will go unnamed) asked me put an onion in Julianna’s room. It would supposedly fight germs and keep Julianna healthy. He/She had read it in an e-mail from a friend, so it had to be true.
I mounted my usual protest (Where did you read that? That’s ridiculous!), but only briefly. I didn’t see how an ordinary onion could act as a microbial air filter, but what was the harm? It was better to keep the peace. And besides…what if it worked?
Confession: I’ve dabbled in a bit of superstition during this medically fragile journey. When you want something so badly, you’re willing to indulge in the irrational thought that a simple act can yield the desired result: the onion is akin to wearing your lucky shirt.
And it’s worked. We are on our third round of onions now (every time J gets sick, we change the onion), but she has gone up to fourteen months between illnesses. The onion is here to stay.
J has 2 onions currently — they stay under her bed. They keep her princess room from being cliché.
The superstitious side of me is also reluctant to talk about a wonderful and unexpected development: Julianna seems to be in a stable period. She’s gotten sick, we didn’t take her to the hospital, and she recovered – twice!
My logical self reasons through it. It’s not that her CMT is getting better. There are still signs of progression, but the rate has decline has slowed. And when she got sick, we put palliative care — and J’s comfort — at the forefront. Past illnesses were treated very aggressively. It was appropriate and life-saving then, but we’re at a different stage of her disease now, and we are making different choices. So far, it’s worked beautifully.
Julianna, of course, wastes no time or brain cells on superstitious rituals and thinking about how she can control her future. She is too busy playing, loving and having fun. She doesn’t obsess about how long it will last.
This childlike faith is an antidote against fear and past wounds. It is stronger than terminal disease and my imperfect faith. It is proof that our future can be better than we ever imagined, even as it brings something we don’t want.
This week:
Julianna channeled Princess Diana, circa 1985. “Do I look like a runner?” — J
J made strawberry muffins with pink paper cups and colorful umbrellas.
“Treasure this forever. I made it for you.” — J
Physical humor, J-style
We are reading Calvin and Hobbes. The last few pages are always negotiated.
M: OK, it’s bedtime. 2 more pages.
J: Five
M: Three.
J: OK. Let’s shake on it.
I take her hand to shake, but J has other ideas.
******
An update on fundraising for CMTA:
We have raised just over $20,000 for CMTA!!! Thank you for all your support.
Julianna’s CMTA fundraising page has been moved to Crowdrise. It’s a bit of an experiment, but the CMTA and I are hoping that it generates more exposure and donations.
Please note:
– CMTA will receive 97% of funds donated through Crowdrise
— Donors are asked to contribute to fundraising costs – but this is OPTIONAL. If you wish to opt out, hit “Edit” at checkout
Check out the new page HERE:
PS- The new page an illustration from Julianna’s upcoming book, Julianna’s Adventures.
Julianna Yuri 
Hi Michelle,
Just a little curious as to why you don’t want to mention the name of the onioniesta?
Deb
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I suppose I’m balancing privacy while being pretty public? Thx for reading!
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Love the umbrellas!! Julianna is another Christo.. she might enjoy seeing his work online. Very imaginative, as is J.
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Huh.. your software or server must be on vacation in another time zone.. 2:30am here in so cal.
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What great news! Thanks so much for sharing. Very inspirational!!
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Julianna, of course, wastes no time or brain cells on superstitious rituals and thinking about how she can control her future. She is too busy playing, loving and having fun. She doesn’t obsess about how long it will last.
This childlike faith is an antidote against fear and past wounds. It is stronger than terminal disease and my imperfect faith. It is proof that our future can be better than we ever imagined, even as it brings something we don’t want.
Of course Julianna doesn’t waste time on worrying about it. She already told you “God will take care of me”.
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Michelle, you are partly right about the onion,,
But you have to peel it and stick a fork in it ,,!!
Ron Dickman
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Hi Michelle,
Great to see J doing well!
My daughter still remembers J through a doll J gave her.
Hope your family is doing well!
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what kind of onion? and did you do anything special to it?
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Yellow, and no!
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When do you know to throw it away and get a new one? I’ve been having some issues, and I’m at that point that I would try anything too. Can’t hurt, that’s for sure.
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Hi Michelle,
i’m glad that you believe in onion “medical power”. I’m from Russia and we use onion all the time during cold season, especially if someone is sick at the house to prevent spreading the sickness to others. We dice onions and put them in different locations around the house. Yes, the whole house end up smelling like onions but we do believe it helps killing germs. Also, you can use strained onion juice for nose drops when you have running nose, just dilute it with water/carrot juice, otherwise it will burn. I was just using onion/carrot drops for my 1 year old son. It helps tremendously, especially when you cannot use anything other that saline drops for babies.
And I also heard people believe eating onion raw helps to fight cancer.
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Thanks for the info!
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I love reading about Julianna! She is an inspiration to me and my family. My grandmother came to the US from the “old country” in 1901. She kept many of the ways of the old country. Putting onions in every room was one of the things she did to keep her family well – and it worked. My Dad and uncles rarely, if ever got sick. My grandma once told us that in the old country (Austria) the village doctor told her family that onions absorb bad bacteria from the air. Which was one of the reasons people used to store onions by hanging them from the ceiling. Using onions to ward off illness isn’t superstitious, it is actually part of the folk remedies that doctors once used.
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Interesting — thanks!
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Michelle,
Congrats on a highly successful fundraiser! : )
All the best & God Bless,
Valentino
Friday, March 4, 2016
11:45Am
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Michele,, I mentioned yesterday that you need to peal the onion
and stick a fork in it,, the next day you will probably need to replace
that onion because it will turn colors, meaning it has Absorbed a
lot of bacteria
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