Why we #embracethebif

Why we #embracethebif for Spina Bifida Awareness Month | erniebufflo.com

It’s October, which means it’s time for perhaps the most poorly-timed awareness month of all, at least from my point of view. Sandwiched between all the pinkwashing of Breast Cancer Awareness, the purple of Domestic Violence Awareness Month, and the yellow and blue of Down Syndrome Awareness Month, you might see a little yellow, because it’s Spina Bifida Awareness Month, too. Last year, some friends and I got a little annoyed with the way some of our bigger advocacy orgs handle Spina Bifida Awareness Month, often focusing on prevention (something you may or may not really be able to totally achieve, because despite what folks tell you about folic acid, Spina Bifida is not 100% preventable) than on the beautiful, vibrant, varied people with Spina Bifida who are ALREADY HERE. So we started a little hashtag, #embracethebif. We just wanted to show people that life with Spina Bifida isn’t all sadness, pain, and difficulty. In fact, like any other life, life with SB is often beautiful, funny, interesting, and full. In short, it’s just LIFE.

Why we #embracethebif for Spina Bifida Awareness Month | erniebufflo.com

Almost daily, someone just starting out on their SB journey finds their way to my blog or twitter or Instagram, and lets me know that even though they are in the dark place of a new diagnosis, kind of freaked out by medical jargon and grim prognoses, just seeing pictures of and reading stories about our ordinary life has given them hope. I remember doing the same when our diagnosis was new. I looked for blogs and images of kids with SB just being kids. And their faces turned out to be a lot more comforting to me than uncertain futures and things like surgeries, shunts, catheters, bowel programs, therapies, delays, braces, wheelchairs, walkers, and all the other things that seemed so huge and freaky when we were staring down a lifetime of them like some sort of loaded gun.

Why we #embracethebif for Spina Bifida Awareness Month | erniebufflo.com

Yes, our life does sometimes involve all of those “scary” things, and some seasons are more full of pain, worry, and medical interventions than others. But mostly? Mostly those things are a sidebar to the life we live and love. So, this year, I want to again fill up my corner of the internet with positive, regular-life images of life with SB, because that’s what I think people who don’t know anything about SB need to see. Life with SB is just another way of being a person in the world. In my house, it looks like blonde curls, a deep belly laugh, a stubborn spirit, a love of dancing, a friend to babies, a snuggler extraordinaire– our Claire Bear.

Why we #embracethebif for Spina Bifida Awareness Month | erniebufflo.com

Please consider sharing images of what SB looks like to you– use the #embracethebif hashtag, and let’s show the world that life with SB isn’t something to fear, but worthy of embracing with open arms. If you’d like, you can also submit images to me via my Facebook Page, and I’ll share them throughout the month!




I took this photo out at the beach last October.  The cute little girl was a European tourist.
I took this photo out at the beach last October. The cute little girl was a European tourist.

Charleston in the summer can be pretty brutal.  The humidity in the air gets so thick you can literally see it in a haze around the moon.  Temperatures rise into the high 90s and stay there for weeks. Months.  At least we have the beach! we say.  When friends from outside the South come to visit and marvel at the oppressiveness of our summers, the way the water in the air seems to cling to every cell of exposed skin, the impossibility that it’s not somehow literally steaming what with the wet and the heat.  Oh but you should be here in October, we say.  October is the best month of the year.

Last weekend it was 88 degrees and we were out at Folly Beach.  But October was coming, sneaking up as leaves began to fall in fits and starts, one at a time from the trees.  My dog Bessie snatches this falling foliage like it’s a snack, dropping like manna from heaven, but she also enjoys eating grass and vegetation of all kinds, so shes’s a weirdo.  October was coming.

And indeed it did.  On the verrrrry last day of September, the temperature suddenly cooled off, to the point that I had to break out a cardigan to wear on my commute.  Right on schedule, October has arrived.  And it is glorious.  I feel like a Romantic poet all stirred and uplifted by the beauty of my environment.  If I weren’t such an awful poet (truly), I’d be composing sonnets on what happens as September sets and October rises like a harvest moon.  Instead I’m daydreaming about bike rides that don’t end with me flopped in a sweaty heap under the living room AC vent, the dogs licking the salt off my skin as I swat them away, laughing at their tickling tongues.  I’m thinking about oyster roasts, as they say the season is finally back in full swing.  I’m itching to go camping, maybe on the beach, maybe up in the mountains where we might actually see some fall color.  I’m wondering when is too soon to bring the boxes of sweaters down from the attic, afraid of a last gasp of summer that might try to hang on, and keep me in sundresses and flip flops. I’m eagerly anticipating what fall goodies will be showing up in our CSA box, though slightly worried it might be an endless stream of mustard greens and beets.  I’m watching for my tan, accumulated over beach weekends since April, to start to fade.  I’m looking forward to October.

Ohhhh, October is here.

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