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!

https://www.facebook.com/erniebufflo

 

Advertisements

we all fall down sometimes, and yet…

IMG_1044.JPG

This Spina Bifida awareness month, I’ve been super focused on highlighting the utter ordinaryness of most of our life, even with SB in the middle of it. Because that’s the truth. Most of the time, most of our life feels very very normal. Toddlers be toddlers, which means that I spend my time reading books to both of my girls, feeding both of them meals, carting them both around town, doing up seatbelts, putting up ponytails, snuggling and reading stories and kissing booboos.

And then we go to the park with our friends for a picnic. All the kids swing. All the kids slide. All the kids run and play. But only one of them is constantly falling down, and, it turns out, she’s starting to notice it too. Continue reading “we all fall down sometimes, and yet…”