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.
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.
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: 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.
– 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
PS- The new page an illustration from Julianna’s upcoming book, Julianna’s Adventures.