spina bifida – erniebufflo's south & west kitchen

August 31, 2017

the moment we realized just how “normal” our daughter’s disability has become to us

Today I took Etta to get her second filling in 5 short years of life. This is hard for me, because I didn’t get my first cavity until I was like 28. (I’m blaming pregnancy for ruining my perfect record. It’s a thing.) Anyway, we’re pretty into good oral health and hygiene, and with her first filling, I felt like a failure for letting it happen.

FullSizeRender 24

Our new dentist here in Denver is awesome, and she said it looks like Etta just doesn’t have good enamel (something about her teeth being hypoplastic?), that it didn’t form right on her baby teeth, and leads to grooves and weaknesses where cavities can form, despite our good oral hygiene. The good news is, on X-rays, her permanent teeth look better, but we may be spending a lot of time at the dentist for these baby teeth.

After we left the dentist, my husband said to me, “Man, Etta sure got the short end of the genetic stick.”

It was only a beat later that I realized how absurd that comment sounds. I mean, we have one kid with spina bifida, but here we are agreeing that it’s actually the “healthy” twin who lost the genetic lottery. And it’s actually kind of true! Etta’s the short, tiny one (finding school uniforms to fit a 3-year-old-sized Kindergartener was a struggle). Etta inherited my cardiac mutation. And now it turns out that she got crappy teeth?

Meanwhile Claire’s differences have just become normal to us, and normal to her as well. Strapping on AFOs, using catheters, scheduling doctor’s appointments and therapies, monitoring for signs of shunt malfunction, wondering if she’s getting a cold or a UTI, they’re just part of our life.

And remembering how we felt on diagnosis day, or when we came home from the hospital, I realize how huge this mundane life actually is. What at first seemed insurmountable and life-shattering, turns out to just be another way of being a person in the world. Aren’t we all just adapting and trying to use the bodies we were given to the best of our capabilities? Don’t we all sometimes need extra help in certain areas?

So, in case you’re a parent or person who just got a big scary diagnosis, I hope you can read this and take a little comfort in knowing that one day, it may very well all seem very very normal. Just part of life. Not a tragedy at all.

Here we are today, thinking just maybe it’s our able-bodied daughter who got the bum end of the twin genetics dice roll. What an amazing thing.

November 7, 2016

I’m with her. And her too.

You guys know I’m a yellow dog who’s all amped up for Hillary. I’ve been working really hard for her. But I’ve never really said why.

Honestly, when asked why I’m With Her, I usually want to say “EVERYTHING.” My politics are driven by my most deeply-held values: wholeness, unity, justice, equality, peace. In a world where people seem proud not to identify with either party, I can’t really pretend that I don’t agree with one on basically every issue. I care about women’s rights, LGBTQ rights, the environment, the poor, immigrants, education, and energy. I love Jesus, and I’m pro-choice.

But just like Claire’s diagnosis has changed our lives in many ways, it has changed my politics. My feminism has become bound up with disability rights. I want her to have every opportunity in life. I want her to always be treated with dignity. I want her to live in a world where she is valued as a whole person, where she will never worry about access to employment or healthcare, where she can dream big dreams and achieve them. And there’s only one candidate that can show my girls their dreams can include the presidency and who will fight for Claire’s rights and healthcare. It’s the candidate who has been fighting for children, people with disabilities, and everyone’s access to healthcare for her entire career.

One candidate has literally mocked people with disabilities. One candidate kicked a kid with cerebral palsy out of his rally: “Protesters get kicked out; it’s actually a mother and her children, one of whom who has cerebral palsy and worries what a Trump presidency would mean for people with disabilities. Supporters kick at the family, including the boy’s wheelchair, as Secret Service tries to escort them out.” His mockery of people with disabilities encourages his supporters to assault a person with disabilities and his family. His presidency threatens the very dignity and safety of people with disabilities, not just because he has promised to take away the healthcare reforms that have helped so many, including our family, but because he fails to set an even basic human kindness example for how we should treat people with disabilities. It shouldn’t shock anyone that he has zero policy proposals to help people with disabilities since he has so few policy proposals in general. (The man claims he will make America great “again” but seems to have very few concrete plans to make that happen.)

Hillary, in contrast, devoted an entire speech to policy proposals that would help people with disabilities. She proposes ending policies that allow people with disabilities to be paid less than minimum wage. She wants Congress to ratify the UN Convention on the Rights of Persons with Disabilities. She wants to improve access to employment and education for people with disabilities. And she wants to continue to improve access to healthcare for people with disabilities.

When I saw Bill Clinton speak at a rally on Friday, he talked about meeting a young Hillary supporter from Florida. He told Bill that he was a fan of Hillary’s because he had a feeling she “wouldn’t make fun of” him. Bill told him he was very smart. “That’s what they say, but I have a hard time getting through the day,” the boy said. Bill told him his feelings were correct, that Hillary has been fighting for kids like him for her entire career (like when she helped found the still-operational organization Arkansas Advocates for Children and Families), and that while in the Senate she had work
ed on legislation to help people with Autism.

I always knew I’d be voting for my first female president for my daughters. I didn’t always know I’d have a daughter whose spina bifida would turn me into a disability rights advocate. But because of her, I have one more reason to be proud to stand with Her.

I’ll be at the campaign office today and tomorrow. If you have any time to spare at all, please do what you can to help out. You can even phone bank from home to make sure people know where their polling place is and have a plan to get there and vote. We need all the help we can get! And above all: get out and vote! Even if the line is long. It matters so much.

September 16, 2016September 16, 2016

out came the mama bear

It finally happened. Someone made fun of Claire because of her disability.

I was sitting on the couch, drinking wine, folding laundry, enjoying some quiet while Jon supervised the kids out biking and scooting with some of the kids on our block, all of whom are older than our girls, but are generally quite sweet to them. Then Claire and Jon came in the door. “Why don’t you tell your mama what they said?” Jon said.

“Those big girls said my diaper isn’t cool and that they don’t want to hang out with me because they don’t want to hang out with babies who wear diapers. Can I please wear some undies? I want them to hang out with me.”

My face got hot. Claire wasn’t crying. She seemed very matter of fact. “Just a second, baby. Mama’s going to get some shoes and go talk to them.”

I slipped on my wicked good slippers, and in my pjs strode down the street. The two older girls saw me and started running. They knew what they said had been unkind. They ran into their yard. I kept walking calmly down to their house. They hadn’t made it into their houses yet.

“Can I talk to you for a second?”

“We’re so sorry, we got carried away, we know what we said was rude, and we’re sorry,” one said.

“It was unkind,” I said, “But I want to tell you something you don’t know about Claire. Claire was born with a disability called spina bifida. She had a great big hole in her back, and she had to have surgery when she was only one day old. Claire is actually amazing. Claire is one of the strongest people I know. People said she wouldn’t be able to walk and now she walks, and runs, and ride bikes out here with you. Claire is AMAZING. And she wears diapers because of her spina bifida, and NO ONE should ever make fun of her for that, because Claire is amazing.”

“We’re so sorry.”

“Thank you. Can you tell her that when she comes back out here?”

“Yes.”

“Thank you. Have a good night.”

And then I walked back down the street. Claire had sat on the potty and changed out of her diaper when I got home. Jon talked to her about how she can wear undies some day, but she’s got to get better about sitting on the potty, which is something she currently refuses to do a lot of the time.

I sent her back down the street on her bike. “I’m going to go talk to those girls and tell them I didn’t like what they said,” she said. She is still one of the strongest people I know. She stands up for herself. And I will always stand up for her too.

October 1, 2015

Why we #embracethebif

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.

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.

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.

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!

March 13, 2015March 13, 2015

lessons i’m learning in my toddler’s dance class, and a Claire Bear update

In this room full of toddlers in tutus, absolutely no one is worried about their rounded belly under purple spandex. No one has given a thought to her chubby thighs in pink tights. Not a one has looked in envy upon the body of her classmates. Instead, as a boombox plays an instrumental of “Beauty and the Beast,” they giggle and grin. They grab hands and twirl. They hug and spin. They are grace in action, even as they regularly fall down.

Even as I feel my own infrequently-exercised thighs burning as we march with high knees and pointed toes around the room, I’m learning powerful lessons too. And they have nothing to do with poise or pointe, and everything to do with grace. Grace for myself and my perfectly imperfect body. Grace and love for the women around me, that I may see them as hands to hold and partners to dance with, not competition or something to compare myself to. Grace, even, for my toddler when she refuses to participate with the rest of the class on a particularly bad morning.

Six weeks of dance classes with Etta Jane are drawing to a close, and I am happy to sign us up for the next six. My happiness is doubled because this time, I get to sign Claire Bear up too. After a year and a half in developmental preschool, Claire has made a lot of amazing progress. Enough, in fact, that we feel ready to back off on some of her therapies. She’s going to be staying home with Etta Jane and me, and we’ll be seeing her PT on an outpatient basis. I am thrilled to get more time with my girl before she has to start real preschool all too soon, and I know she’s going to love dance class as much as Etta Jane and I do. I talked to the teacher and made sure that it would be ok if she had to wear braces and sneakers instead of ballet shoes, and was assured that she is more than welcome to join the class. Grace abounds. There was a point where I didn’t think our girl would walk, and now she’s ready to DANCE.

January 28, 2015January 29, 2015

Dear me on diagnosis day:

Over the past three years, there have been many times that I’ve thought about me on our Diagnosis Day, the day we found out that one of the babies then growing in my belly had spina bifida. It was my 27th birthday. We were excited to find out if our twins were boys or girls. We found out they were girls, and we also found out “Baby B,” the “one in the top bunk” had something wrong with her head and spine. Continue reading “Dear me on diagnosis day:”

January 6, 2015January 29, 2015

the #1 thing I want you to know about Spina Bifida isn’t about folic acid

16073174315_368e0d28a1_z

It’s apparently folic acid awareness week. Which means I’m on my soapbox again.

It started when I saw the posts from the Spina Bifida Association on Facebook, again letting their audience of people who already have SB in their lives know that SB can sometimes be prevented by making sure women of childbearing age are getting enough folic acid even before they become pregnant, as neural tube defects happen so early in a pregnancy that by the time you miss your period and start taking your prenatal vitamins, it’s too late. But I have a feeling if you’re following the SBA on Facebook, you already know that.

Continue reading “the #1 thing I want you to know about Spina Bifida isn’t about folic acid”

October 24, 2014

we all fall down sometimes, and yet…

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…”

October 15, 2014October 16, 2014

it’s not that hard, and i’m not that special

Guess what? It’s still October, and it’s still Spina Bifida Awareness Month. Inspired by this post my friend Mary Evelyn wrote last year addressing reader questions about SB, I thought I’d cover a biggie that I’ve never answered before: How hard is this SB/special needs parenting thing day to day?

Like Mary Evelyn, I have to say: it isn’t. Continue reading “it’s not that hard, and i’m not that special”

October 6, 2014

Yes, I have a child with a disability. I’m still pro-choice.

I feel I have to write this post, in the midst of Spina Bifida awareness month and all, because I don’t want anyone to get the wrong idea.

I see it a lot, parents of kids with SB or other disabilities, angry that at some point in their fetal diagnosis experience, a doctor dared offer them the option of terminating their pregnancy. I agree that a lot of the time, this “option” is presented in what some feel is a hurtful way, a way they believe suggests that their kids’ lives aren’t worth living, a way that seems to later produce parents who are defiant– doctors said my kid shouldn’t live, but NOW LOOK AT HIM! TAKE THAT, DOCTORS! No one ever presented that option to us, just like the fetal surgeries weren’t an option for us, because it would have risked the other twin too much, so I have never felt pressured in any way to terminate a pregnancy.

I also admit that I read things like a stat that says 60% of parents who receive a fetal diagnosis of Spina Bifida choose termination, and it makes me sad. Because I look at my beautiful, vibrant Claire, and I do think her life is obviously worth living. I’m madly in love with her. I can’t imagine life without her.

But the thing is, I realize that my life, my choices, and even my daughter aren’t the same as everyone else’s situation. I realize, and have testified to that effect before the Arkansas Senate (and on the local news), that not everyone receives a manageable fetal diagnosis– many receive a devastating one. And in the midst of tough choices and pain, I want every family to have safe, compassionate, OPTIONS.

So there it is. I’m the mom of a kid with a disability, and I’m pro choice. Part of why I write, part of why I participate in things like #embracethebif and want people to see what Spina Bifida looks like is because I do think that 60% stat should be far lower. I do think parents should know that kids like Claire are whole, complete, beautiful, and vibrant, because that might make the choice to carry such a pregnancy a little bit easier. It’s also why I support disability rights, fight stigma, and want access to healthcare, childcare, and developmental services. It’s why I support education and employment access. All things that might make the choice to bring a child with a disability into this world a little easier.

But I’m still pro-choice. Pro-child, pro-family, pro-disability, pro-choice. I hope that even if you disagree, you can respect that. I hope that even if you disagree, we can keep fighting together for all the other stuff we do agree on. I don’t want to fight with anyone. I just had to put this out there because I was uncomfortable with some of the anti-choice ways Spina Bifida Awareness rhetoric can be used, and I don’t want to be lumped in with that.

Share this:

Share this:

Share this:

Share this:

Share this:

Share this:

Share this:

Share this:

Share this:

Share this: