Wednesday, August 4, 2010

some thoughts before packing my tutu and leaving on a jet plane*

* Okay, technically a non-jet aircraft

   So you may have heard that there's this ladies' social media convention thingy happening in New York City this weekend. I've been blogging in various places for five years now, but this is my first time getting to attend and I'm pretty pumped about the whole thing (meeting people I really look up to! Food I didn't cook! Parties! And yes, swag!), I'm not gonna lie.  For a while it looked like I wasn't going to get to go, because a routine surgery combined with my husband's medical luck ate a good bit of my May, pretty much all of June, and some of July as well (yeah, sorry about not posting last month). But it all worked out, and there are some serious shenanigans planned, and I'm taking some famous cross-dressing Legos along for the ride. This has fun written ALL OVER IT! Especially since my husband has gamely learned to replace my youngest son's g-tube, meaning zero worries about leaving the kids, and benevolent aliens came and replaced my scary, acrimonious ex-husband with a guy who's actually pleasant to have brief conversations with at exchanges and turning into a Dad, so I'm not worried about the hand-off I'll miss. I wasn't sure what I would write about today, because honestly I write better under stress, or fired with righteous indignation; yes it is a headache enrolling a g-tube fed child in kindergarten. Sure, my youngest has a big appointment coming up with his GI specialist that could change our lives. Immunosuppressants for transplant patients continue to be heinously expensive and strain our budget here on a monthly basis, and we're as buried in paperwork as ever, but it is what it is. I'm tempted to say that I'm changing the things I can change, accepting the things I can't change, and getting better at knowing the difference every day, even though I'm not into prayer, because it's also the logical thing to do.

   About that, though. Acceptance. Sometimes it's healthy, often it's all you can do about a Very Bad Thing, even as it kills you to admit that. Once in a great while, though, logic, prayer, or whatever else you turn to when you're unsure of how to handle something has to go out the window wrapped in tulle and tied with a bow.

   Have you read about Tanner? He's eight years old, he has Duchenne's Muscular Dystrophy, and as wrong as it feels to say this about any eight-year-old boy, he's dying. Even as his body continues to grow (making it harder for his single mother to care for him at home given that he can't transfer himself from wheelchair to bed and back). It was starting to look like he'd have to "go into care" rather than living out his remaining days at home surrounded by his family. Tanner's aunt is a blogger who refused to accept that there was nothing to do about that, and she has started something wonderful that others have taken up, and it's getting kind of huge but there's still a long way to go before she and the others who have taken up the cause of raising enough money to modify Tanner's home in ways that will allow him to stay there for however long he has left can call it done.

   I donated $10, because it's all I could spare, and I'll be traipsing through New York in a tutu, and I'm spreading the word every way I can. Because Tanner and his mom deserve for the Internet to make this happen, and also because Catherine has reminded me that some things are unacceptable, meaning you don't accept them, you raise hell, and with the help of others, you change them. Because sometimes logic (or prayer) takes a back seat to love, and that is a beautiful thing.

   It would be great if some of you could chip in too, or help out with any of the initiatives Catherine outlined in this post on her blog, or, in the words of Catherine herself:

"...just hug your kids, hard, and treasure every second of your time with them. If that’s all you do, that is totally enough. Totally. More than. If all this story inspires is a little more cherishing and loving and whole-hearted embracing of every precious moment… well, that is everything. Really."

    I'll be doing that, too. Thank you, Catherine (and Tanner) for reminding me just how lucky we all are to have our families right now, today, and that with enough love, anything is possible.


MFA Mama also blogs here, and is a fan of tutus in general.

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