Der Schmetterling

Der Schmetterling
Monday, September 9, 2019

On Saturday morning I said to Shauna, “Wow, two years ago we were getting ready for the Journey.”
Shauna replied, “Yeah, I saw that. Six years ago I was at the farmer’s market with Juliet.”

Summer is ending, and with it pass many of the good and happier milestones that we experienced as a family. (Thank you, FB.) Four years ago, Juliet was still in remission and we were living together as a family as much as we could, as fast as we could. Five years ago, we were arriving in Germany and just starting to settle into what we hoped would be years of wonderful discoveries. Six years ago, we busied ourselves with visiting NorCal farmers markets, totally unaware that our path would soon take us to Europe. (Heck, I think I was even still on my first ACL in my right knee at that point…) But once we pass Halloween, the balance in the reminders of past memories that resonate most strongly with us will become increasingly bitter, rather than just bittersweet. Yes, we are of course still a family and have much to be thankful for, there is still happiness in our lives, and we are blessed with many friends the world over, but there’s almost a ‘max cruising altitude’ ceiling that suppresses us.

(sigh)

Well, if it’s been two years since the Journey and almost as long since I’ve journaled here, what’s the scoop?
Measured a few different ways, the Journey was a success.

1. For starters, nobody got eaten by a polar bear. Maybe this is a low bar, but there was at least one moment, at Point Barrow in which it felt entirely too possible for this situation to befall us. MoshiMoshi (my car…and now emblazoned with a ‘MOSHI2’ Ocean State license plate) made it back (Thank you Erik!) and the IRS has yet to come back and inquire how it is that I drove 5,000 miles in my personal car for charitable purposes. And I agree…I have a bit more yet to write on all of this.

2. We raised at least $60K. I say at least as we didn’t have a proper mechanism to formally track non-US funding. In a future journey we’d do a lot of these sort of things rather differently (as well as track this through one link, rather than several), but that’s another story yet to be told. We did good things for a lot of kids here, and this opened some doors that had previously been closed. All good things…and all stories yet to tell.

3. We got a lot of awareness for the need to support research in the fight against childhood cancers. An aspect of my personal goals was to leave an indelible impression on folks who followed us so that when the time was right, when the right opportunity arose, each of those folks would say or do the thing that would help advance the ball in the fight against Childhood Cancers. Neither this, nor our sweet Juju’s smile will soon be forgotten!

A bit bigger picture—and not so much of our making—but there are favorable steps of progress here and there. For example, Congress passed the STAR act (https://www.stbaldricks.org/blog/post/the-childhood-cancer-star-act-passes-and-is-signed-into-law). Yes, believe it or not, our US Congress passed some good legislation. Some novel research efforts are showing progress (and more on this in another post soon). But the STAR act is unfunded and cures – to say nothing of ‘survivable’ cures – remain elusive. There are still far too many children and their families the world over facing horror stories of their own.

Working towards this as a bereaved parent consumes a lot of energy, but these goals are still out there. Every time I see a commercial for any children’s cancer-related charity, I see my own daughter and remember. I also remember a lot of the other children whom we met along the way. I sometimes wonder where they are. September is Childhood Cancer Awareness month, and it’s honestly a hard time to be in tune with those commercials and such. Over the New Year we moved from California to Rhode Island (yes…really…a bunch of folks actually live here) and I do not at all miss the St. Jude’s billboards that featured prominently on Hwy 101 as I commuted.

A little self-centered, I’m probably most thankful for everyone who kept the Journey going—some who literally directly aided it and many more who encouraged us and supported us in a way that made it easier to keep going. You know who you are…and I—we—are ever so grateful. Upon returning it was difficult to find purpose in a way. In December of 2017 I feverishly started to write a book, which I think helped pull me out of the funk that took me offline and left me with limited means to express myself. It’s basically done now…and I’m slowly working through the structure of books #2 and #3 (If anyone happens to have a hook up in the MG/YA publishing arena, please PM me!). But every time I see one of the Juju’s Journey t-shirts (thank you!) it brings me back. Part of me truly itches to start to have more to say again…and maybe eventually actually do again.

And so today I re-discovered how to break back into our website to perform perfunctory administrative duties, so I’ll hopefully be back for more in the rather near future. And this it is, after all, Childhood Cancer Awareness Month, and that’s important.

As a final thought, on Saturday we visited a topiary with an amazing array of butterfly-attracting plants. The butterflies did not disappoint, and it was really nice to watch them flit about (although dang hard to get a good snap, close up, for whatever reason…as if they wanted to be watched, but not actually be ‘captured’ for any posterity less fleeting than memory) and in some cases appearing to joyfully chase each other in the random and unpredictable way that butterflies fly. Many, many things make me think of Juliet…and butterflies that seem to demand your attention are among them. I like to think that at that moment she and I have a special connection, like in that moment of happiness and joy I can touch a bit of what that used to feel like…how that used to be.

It’s a beautiful, wonderful thing in a deeply special and private moment. But the trick is to walk away and retain only the warmth of that moment until you can be distracted by something other than its departure…

Ein Schmetterling auf einem Schmetterlingbusch