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.

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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.

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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.

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the paralytic and the poor girl: confronting disability in church

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Sunday morning, Claire and I were walking hand in hand up the steps to church. As I went through the door, a woman coming in behind us asked, “Is your daughter left handed?” “That’s a random question,” I thought, but I answered, “No?” “Oh, she leads with her left foot,” the woman said. “OH!” I said, “Yeah, she has spina bifida and her left foot is her strongest foot, so she tends to step first and step up with it.” And then she said it.

“Oh, you poor girl!”

To her credit, the look on her face as the words left her mouth was like she’d like to suck them back in unsaid if possible. I had kept moving toward the table where we make nametags, and she ended up writing her tag next to us. “I didn’t mean to say that like that,” she said. “You’re a beautiful girl.” I smiled at the woman. I don’t think she meant to say something hurtful, and she knew it came out wrong.

Claire and I went in, found seats, and sat down. I started to think about what I was going to say to her after church about what that woman had said.

And then guess what the lectionary text was on Sunday? The one where Jesus heals a paralyzed man after his friends lower him through a hole in the roof of the house where Jesus is speaking.

Little known fact: we parents of disabled kids who go to church are a little bit wary of Bible stories where disabled people are miraculously healed. We spend our time trying to convince ourselves, our kids, and the world that having a disability is just another way of being a person in the world, that people with disabilities are whole and complete, just the way they are, and then we go to church and hear retrograde terms like “crippled” thrown around and stories like that of the paralyzed man used to suggest that maybe people with disabilities are more in need of healing than the rest of us sinners, somehow.

To make matters more awkward, the children’s message was actually a play put on about the Bible story by some older kids. My little blonde piece of sassy perfection was sitting on the front row on the floor watching it. And while I’m sure they did it because slapstick humor is always funny, the play presented the “paralytic” as completely unconscious, constantly being dropped or otherwise accidentally injured by his friends attempting to carry him toward Jesus. It completely removed any agency or really humanity from the man, and made the only actors in the story the friends and Jesus.

Claire loved the singing and the big kids and declared it the “BEST. SHOW. EVER.”

After she went off to children’s church, I paid extra attention to the Bible reading of the story, Mark 2:1-12. And you know what I saw? Everyone but Jesus is focused on the man’s physical body, his disability. Four friends carry the man up to a rooftop, make a hole in it, and lower him down. But when Jesus sees the man, his first words are, “Son, your sins are forgiven.” And Jesus stops there. Jesus doesn’t immediately jump to healing that man’s body. He sees him as no different than anyone else: someone in need of grace and salvation, just like we all are, able-bodied or not. In fact, he doesn’t infantilize the man or take away his agency, but he reminds us that the man is a human actor with free will, responsible for his own sins, as in need of forgiveness as anyone else.

It’s only after some of the crowd starts grumbling and questioning, “who is this guy to forgive sins? This is blasphemy!” that Jesus decides he needs a way to show people that he has the power to give us all the wholeness we need. It’s like he goes, ok, fine, since you guys don’t believe I can heal the important, soul-level stuff, let me give you something you can see. And then he tells the man to take up his mat and walk.

Finally, an insight into this story that doesn’t leave me feeling frustrated with a Bible that reinforces a worldview that sees Claire as somehow less than whole in a way that able-bodied people aren’t. Instead, I see a Jesus who sees us all as equally in need of healing and wholeness. A Jesus who gently rebukes the people who might only look at the physical disability and reminds everyone that the place we’re all broken isn’t a place anyone else can see.

That night at the dinner table, I said to Claire, “I want to talk to you about what that woman said in church, how when I said you have spina bifida, she said, ‘poor girl.’ Do you think you’re a poor girl, or that she should feel sorry for you because you have spina bifida?” And Claire said, “I’m not poor! I’m just different!” We talked about how our bodies are not the reason we love and are loved, but that it’s our hearts and minds that make us who we are to people. We talked about how so many of us are different and need help sometimes. And we reminded her that we love her because of who she is, a funny, nurturing, hilarious little being who takes such great care of everyone around her. Thanks be to God.

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I’m with her. And her too.

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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.

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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.

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Photo credit: Whitney Loibner

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.

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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.

out came the mama bear

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

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.

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

 

when one twin can potty train and the other can’t

potty training twins when one has spina bifida

This is a post I’ve been thinking about writing and trying to decide if I should or not. A major reason I want to write about our lives with spina bifida is so that others can be encouraged, and also so people without SB or other disabilities can see that this life we’re living isn’t “special,” but just life. But the truth is, sometimes SB is a big bump in our paths, and I need to be able to write about that, too.

I’ve also hesitated to write about potty training because I want to respect my kids’ privacy. I don’t want them to ever feel bad about or be teased about things I’ve written about our lives. I would never post a picture online of them on a potty or something. But I feel like I need to write about this because it’s been such an unusual problem. I also feel that potty training woes are pretty universal and any kid who dares to tease one of my girls about using the potty should probably ask their parents about their own potty misadventures.

The girls are now past 3, and though Etta has made strides in the potty learning department, I can’t say that either of my kids are potty trained. And the intersection of their personalities and this milestone and the speed bump of spina bifida has made the whole situation oh so complicated.

Claire, ever wanting to be a big girl, always asking me if she’s old enough to drive the car and when her boobs are going to grow in and when she’s going to be tall like me, would love to be able to be a big kid in just about every respect, including the potty. However, like most people with SB, Claire has disability in her urinary and GI tracts. She, like many people with SB, uses a catheter to empty her bladder and takes medicine to keep her dry in between caths. In the future, this is how she will manage her bladder, slipping into a bathroom to discreetly use a cath, and no one but her will have to know. For now, though, she can’t catheterize herself, so we do it for her every four hours. Most people with SB also get on some kind of “bowel” management plan that can involve nightly enemas to keep them dry during the day, medications, and even surgeries. We have an appointment with GI in August to start figuring out what Claire’s bowel management program will be, but it is our hope and belief that she’ll be able to be diaper free and will be “potty trained” to the degree that she will be able to cath and do whatever bowel protocols she needs to do to stay clean and dry during the day. But none of this progress is as fast as she’d like.

Etta, usually my independent little spirit, has decided she is just not ready yet to take the potty leap. If you ask her, she will say, “maybe tomorrow.” This has been her approach to many milestones. She didn’t walk until 14 months, when she was good and ready, skipping the toddling-and-falling stage of many early walkers and graduating straight from cruising to walking. Her speech development also seemed a little delayed for a while, and our pediatrician was even talking to us about referring her to a speech therapist, but her verbal skills have taken off recently, and we have no concerns. I’m a little frustrated that she hasn’t shown more interest in the potty, something I’ve been trying to get her to do since she was 18 months old, but I have confidence that my girl does things at her own pace in her own time.

Faced with a reluctant potty user, many parents try to motivate their kid. This can be something simple like telling them it’s time to be a “big kid” and buying “big kid” undies and doing other “big kid” things. Except I can’t do that, because I’d be simultaneously telling Claire that she is not a “big kid” since she can’t do these things. Some parents do boot camps or sticker charts, rewarding kids for potty progress, but then Claire would wonder why she can’t have treats and rewards, too. She actually cried at Bible School when all the other kids in our group had potty breaks and she didn’t get to use the potty.

I do what I can to affirm to Claire that she’s a big girl of whom I am very proud even though she doesn’t use the potty. I want her to know that what I’m proud of in her is her loving heart, her inquisitive mind, her infectious laugh, her affectionate nature, her nurturing spirit, her tenacious soul, and all the other things that make her who she is. I don’t want her to ever feel that she is anything less than a whole person, regardless of tools like AFOs or catheters or enemas that help her take care of her body in the ways she needs. At the same time, I’m at a loss of how to motivate her reluctant potty training sister without making Claire feel less-than.

I’m sure one day this will seem less fraught. Claire will have a potty system that works for her. Etta will eventually be a potty user. But in the meantime, this feels tricky.

 

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.