the adventures of ernie bufflo

things magical and mundane


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an english major meets kids’ tv

Hi. I’m an English major. I can write you at least five paragraphs analyzing ANYTHING. This makes it somewhat problematic to enjoy normal things. Like kids’ TV.

This morning, tired of Elmo and Curious George, I turned on Clifford. You might remember from childhood that it’s the story of a little girl and her bff, a Big Red Dog who’s basically the size of a house.

What I didn’t remember was that it’s basically a cautionary tale: family adopts shelter pup, no idea what they’re getting into,  it gets bigger than expected, and they end up losing their home, having to leave the city they love, and wind up living on an island.

But then, I think to myself, NO! Clifford is like a perfect analogy to our fetal diagnosis experience: you think you’re just having a baby, and then something big comes out of nowhere and changes the whole experience. You might have to reconsider your living space, you may have to make some life changes, but ultimately you and your unexpected addition are very happy together in a new kind of normal.

Or maybe it’s just a kid show about a giant red dog. Yeah. It could be that.


one perfect day

As Saturday began, I didn’t think it was going to be a good day. I had made plans to meet some of my friends at the zoo with the girls, and getting the three of us up, dressed, fed, packed, and loaded wasn’t going so well, particularly because Etta seemed to be having some teething-related pain and was screaming her face off. Determined to get out the door and spend some time with friends I love, I gave her some Tylenol and a frozen teether, and got us on our way, practically chugging my coffee.

Then a funny thing happened: a perfect day. It turns out 5 adults, 1 elementary student, and 2 almost-two-year-olds is a good mix for a zoo day. I had help dragging the little red wagon, lifting babies to better vantage points, and entertaining kiddos at lunch. The girls had a big kid to watch and copy. The weather was amazing– sunny and 70s after what seemed for a while to be an interminable, cold winter. And for some reason, despite our screamy start, my children, perhaps because they love the outdoors, people and animals, were the best-behaved toddlers in the whole dang place. They made mostly-appropriate animal sounds when they saw elephants, tigers, lions, and monkeys. They may have called the penguins fish, but they seemed to really enjoy feeding time. And they rode in the wagon and were hoisted around by people who weren’t their parents with nothing but smiles and giggles. Only at the very end of the route through the zoo (we saw everything but the reptile house, which we all agreed could be skipped due to creepy) did anyone get the least bit tearful, and as we were an hour past naptime, it seemed completely reasonable.

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Our happy crew. Etta would have been wearing sunglasses, too, but she took them off right as the picture was snapped.

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Loved getting to see this tiger going for a swim. Reminded me of Life of Pi.

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You can’t quite see it here, but it’s a mama gorilla napping with her baby in her arms. It reminded me of napping with my own girls– in fact, Claire and I had a snuggle nap when we got home from the zoo!

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Bufflo Gal Gothic.

We came home and Etta went down instantly and soundly for a nap. Claire needed some snuggles, so I made the real sacrifice of lying down with her in a cool, dark room, dozing and smelling her hair for two hours. We all woke up just as their daddy got home from work, and we cuddled in the den and watched Tinkerbell as we came out of our nap trances. We all spent the rest of the afternoon outside, soaking up some much-needed sunshine, and ended the day with more snuggles and some storytime. As I put Claire down to sleep, I was practically tearful with love for my amazing little family.

Toddlers can be difficult, no doubt. There are lots of big emotions crammed into tiny bodies. They don’t quite speak English, which causes a lot of confusion on both sides. They don’t always understand why they can’t have their way/that thing they want, and they sometimes throw really impressive fits. But oh, once in a while, just often enough to keep me going, they have utterly magical days. I am so very thankful Saturday was one of them.

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Look at these goobers. Love them.


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parenting olympians

My girls rocking their 2012 London Games onesies nearly two years ago.

My girls rocking their 2012 London Games onesies nearly two years ago.

I am unabashedly obsessed with the Olympics. Winter or Summer, it doesn’t matter. I love watching people achieve their dreams, compete for their countries, and doing their parents, always featured in NBC’s heart-wrenching human interest stories, proud. The summer after the girls were born, pinned to a couch under sleeping or eating babies, I watched a lot of the London Summer Games. This year, my only couch time is after those babies are in bed, but I’ve been watching quite a bit of the evening coverage as well. (If you’re also into watching the Olympics, follow me on twitter and join in on the live tweet action after 7 pm– just make sure to use a hashtag so your friends who are less obsessed can filter your Olympic tweets from their streams.)

One thing that stands out about the Olympics are the ads. Pretty much every spot you see that isn’t for a car or truck features an Olympian of some kind. Proctor and Gamble have been running a series of ads called “Because of Mom” in which athletes thank their mothers for helping them achieve their Olympic dreams. I have no real beef with people celebrating their mothers or motherhood. Motherhood is great! It’s just that…you bet your sweet bippy that if my girls ever make it to the Olympics (I’m thinking 2 man bobsled, maybe?), they’ll have their dad to thank as much as their mom. Because they are blessed to have an amazing dad, and I am blessed to have an amazing coparent. My husband and I are both blessed with amazing and involved dads, too.

I mean, it’s really no wonder I grew up to marry a man who turns out to be an amazing dad, because involved parenting is just what I expected based on what I grew up with. My dad, a doctor, but also a scientist, came into my science classes with a little red wagon full of props and gave talks worthy of Bill Nye. He worked odd shifts, so he drove a lot of carpools. He created elaborate treasure hunts for us with riddle clues. He got me into nerdy stuff like Star Trek and the Civilization computer games. He got me through high school math and science, both of which were hard for me, with intense, one-on-one homework help, complete with antics like “the ribosome dance,” which I will never forget, ever.

I’m willing to bet at least a few Olympians had dads like my dad and my husband. Unfortunately, P&G isn’t talking about them. I say unfortunately, because just as I mentioned in my “inspiration” post, kids need to see normal, everyday people as role models– how can people who may not have amazing dads in their life grow up to be or expect to co-parent with amazing dads if we don’t see dads being normal and amazing in our lives?

I do want to shout out a company getting it right. I loved this Frosted Flakes ad featuring one of our women ski jumpers (first year in the Olympics for their sport after decades of fighting for equality!), Sarah Hendrickson and her dad:  Sarah clearly has a dad like mine. They even have the same taste in names for their daughters!

Meanwhile, if you go looking for a P&G ad featuring a dad, you’ll find this, from Tide: 

DADMOM? REALLY? A dad who stays home with the kids and takes care of the house isn’t Mr. Mom. He’s not a dadmom. He’s just a dad. He’s parenting. He’s caretaking. He’s not stepping outside his gender or being anything less than a man– a man who has and cares for a family. It’s like when I hear people say a dad is babysitting his own children. Nope. That’s parenting, folks. People of all gender identities and expressions can do it.

P&G claims to be a “proud sponsor of moms.” Well, sponsors usually pay people, rather than expecting to be paid, P&G. And I’m not buying the gendered view of parenthood that you’re selling.

I also have similar issues with their vision of disability: 

While on the one hand, I love that they’re running ads featuring athletes with disabilities that showcase them as athletes, using the same visual style and soundtrack as the able-bodied athletes, they lost me at the final tagline. I’m not one of the world’s toughest moms just because my daughter has a disability. As I said on twitter when I first saw the ad, I think most people are as tough as their circumstances require them to be. We all rise to the occasion. If you “don’t know how I do it,” it’s just because it hasn’t been required of you (yet). Just as it doesn’t take a special person to love someone with special needs (because they are no more inherently easy or difficult to love than any other person), it doesn’t take a tough parent to parent a child with a disability. Because you just parent them, because they’re your child.

If someday Claire is a Paralympian, she’ll be thanking both of her parents. And she certainly won’t be calling us any tougher than anyone else.


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inspiration?

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Although I finally closed comments on my “Not a Hero” post, likes and feedback continue to roll in. Nothing I’ve ever written has generated such a response before, and I am so thrilled and humbled. Perhaps most of all, the feedback that has meant the most to me is that of adults with disabilities, who without exception, have told me basically, right on, I’m not a hero, just a person living my life.

And while it may sound counter to my “not a hero” message, I find them, the people who have left these comments and messages, incredibly encouraging. Not in a patronizing way, but in a window to the possible future for my daughter sort of way. Just as I want my girls to know and see strong, smart women out in the world as encouragement, as windows to their possible futures, I want Claire to see normal, everyday people with disabilities to let her know that there are all sorts of possibilities for her life. Possibilities that include meaningful work, deep relationships, fun hobbies, athletics and exercise, and anything else she may so desire.

When we got our diagnosis, I knew nothing about spina bifida, and our doctors seemed to know very little about what we could expect for our daughter, because spina bifida includes such a range of disability and experience. This whole journey has been characterized by a deep hunger for knowledge on my part. I remember finding the blogs of parents raising kids with SB, and just putting a face, a beautiful KID face, to what was at first a scary and mysterious disease gave me so much peace. Now, as she grows, I find myself still hungry, not so much for facts, but for glimpses of what her life might be. And the more I read and hear from adults with disabilities, the more I realize that my hopes for her as a person with a disability aren’t that different for my hopes for my girls as future-women. I want freedom, autonomy, and bravery for them both. I want them both to have the courage to stand up to both sexist and ableist oppression that they may encounter in their lives.

It’s why I related so well to this post, which I found via Rachel Held Evans. The writer talks about seeing adults with disabilities in a new way as the parent of a child with a disability, and finding them inspiring, and in the piece she tries to draw a distinction between that and the patronizing, limiting “inspiration” I addressed in the “Not a Hero” post. I think, as Ellen seems to be saying in her post as well, that the difference is largely a problem with the word “inspiration.” We rightly bristle at the idea that our kids are “inspiring” just for navigating the world in the only bodies they have ever known– that’s no more noble than any of us learning to navigate the world in the only bodies we’ve ever had. But we also, like any other parent, are searching for role models for our kids. Not role models as in Batman or even Olympians, but actual people, whose lives look like their lives. We face a future full of unknowns, and we just want to see that there are lots of possible futures, and they’re good. I’ve heard moms of boys talk about finding good male role models for their sons. As a mom to girls, I feel no qualms talking about my desire for good female role models. And as the mom to a daughter with a disability, I look for the same.

I’m thankful my post has connected me to so many perspectives from so many voices I wasn’t reading before. I’m just starting out, and I have much to learn in order to best raise my daughters to be women in the world.


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hello, babies

Kid President is pretty amazing. I think most people need to watch that video sometime before or after their high five just for getting out of bed in the morning. Because the world IS amazing, and we all mess up, and we do need to forgive each other’s mess ups. And maybe dance some more and have some more corndogs.

He actually echoes a favorite bit of Kurt Vonnegut that I’ve loved since I found out I was pregnant with twins. It’s from a baptismal speech the protagonist of God Bless You, Mr. Rosewater plans for his neighbor’s twins: “Hello, babies. Welcome to Earth. It’s hot in the summer and cold in the winter. It’s round and wet and crowded. At the outside, babies, you’ve got about a hundred years here. There’s only one rule that I know of, babies—God damn it, you’ve got to be kind.”

This quote actually led to me experiencing a moment of kindness. I had tweeted about my love for the quote and how I wanted to hang it up in my babies’ room. Then I almost died and came back again, and a friend I had only met via Twitter said she had made me something to celebrate my survival. One night soon after we had both babies home, she came by and gave me this beautiful (and slightly censored because kids) canvas:

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It’s one of my favorite things in my favorite room of our house. I want my kids to know that they have to be kind. But I also want them to know that people are kind. That the world is full of good and beauty, if we look for it. I guess that’s my answer to Kid President’s question about what kids need to know.

It reminds me of a bit in Thomas King’s The Truth About StoriesKing’s refrain throughout the (excellent) book is that the truth about stories is that’s all we are. The stories we tell ourselves about ourselves and about the world literally construct the world we experience. He points out in one passage that we can tell ourselves or our children that “life is hard,” but we can equally teach them that “life is sweet.” Each perspective constructs a way of being in the world. Sometimes life is just hard, it’s true. To quote Vonnegut again, “so it goes.” But I think the balance bends toward the beautiful and the good, because I believe in a God who is at work on a great project of reconciliation, re-creation, and renewal. And I think we get to participate in this project, to be agents of beauty and goodness and change. I’m raising up revolutionaries to participate in this project, too. So I want them to be kind and see kindness, in their hundred years here and beyond.


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what’s the frequency, ernie?

Illustrating this post with gratuitous twin cuteness just because I can.

Illustrating this post with gratuitous twin cuteness just because I can.

I continue to be amazed by the response my “Not a Hero” post is getting, and am super grateful to everyone who has read, shared, and commented on the post. Today, it’s featured on WordPress’s Freshly Pressed page, which is bringing a new influx of readers and commenters. To new folks: welcome, thanks for reading, I promise to moderate comments as quickly as I can.

The newest crazy piece of news that I am totally fangirling out over is that I’m going to be on NPR’s Tell Me More tomorrow. Check your local public radio station to see if they air the show, and tune in if you want to hear what my accent sounds like in real life. I will be doing my level best not to talk too fast or bring shame upon my family. If your local station doesn’t air the show, you will likely be able to listen after the fact on the show’s website or podcast.

I’m actually beyond excited about this because I’m a huge NPR fan. I’m also super excited to get to talk about my amazing kids, and about the responses I’ve received to the post. This wouldn’t be happening if it weren’t for people like you (listeners like you? Am I on NPR already?) reading and sharing, so again: thank you. And thanks for cheering us on through this whole twins/spina bifida journey– it’s meant so much.


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my child with a disability is not my hero

IMG_0128When we first began our journey with spina bifida, I didn’t know anyone with SB or anyone whose kid had it. One of the best things that has happened over the last two years is I have found other people who are going through the same thing, bloggers whose kids have SB, and message boards full of parents whose kids have SB. This community has been helpful and informative, but most of all, it has let us know that we’re not alone. Still, some things have become apparent as we’ve delved more into the special needs community that make me uncomfortable, and one of them really crystalized for me yesterday when chatting with a friend who also has a toddler with SB. Basically, as my friend and I agreed, it’s this:

The tendency of parents of kids with special needs and disabilities to say their kids are “heroes” makes me deeply uncomfortable. 

On the one hand, it makes perfect sense. We see our kids go through so much more than most typical children deal with– surgeries, therapies, challenges, and pain, and we see our kids thrive and survive in spite of it all. We’re impressed by their resilience, and we want to express that. Also, in a world that marginalizes and devalues many people with physical and cognitive disabilities, we want to affirm the worth and value of our kids. I see no malice there.

But what concerns me is that calling our kids heroes is just another form of dehumanization and marginalization. Our kids are KIDS, first and foremost. They’re people, human beings, whose value lies simply in the fact of their personhood, not in milestones or hurdles overcome. When we put them on pedestals and call them heroes, we make them something other than human beings. And we give them a standard that, at times, may be hard for them to live up to. They might not always feel like being heroic. Sometimes they might just want to be kids, people, frustrated and fed up and overtired and hungry and in a bad mood and all the other less-heroic stuff we feel from time to time.

Having twins, one of whom has SB and one who doesn’t makes this really apparent to me. Both of my kids are just people, existing in the bodies they were given, facing any challenges that come their way. To borrow a phrase that I learned from Sesame Street*: having spina bifida is normal and natural and fine for my daughter. She’s not heroic for existing in her body any more than anyone else is, because she has always been this way. Calling her a hero is just another side of the coin from feeling sorry for her, and I don’t want people to do either. I want her to have the beautiful freedom to be a complex, complicated human being who both overcomes challenges and makes mistakes, who can be joyful and angry and every other emotion there is, with no pressure to be anyone but herself. She’s no hero, she’s something much more magical and mundane: a little girl, full of untold potential, just like her sister.

*We recently watched an old episode of Sesame Street which featured a young man named Rocco who happened to be blind. He is introduced to Elmo, and when Elmo finds out Rocco is blind, he says “I’m sorry.” Rocco tells Elmo he doesn’t have to be sorry, because being blind is normal and fine for him, just like being able to see is normal and fine for Elmo. I really loved it. Plus, Rocco is a great singer.


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my airplane angel and the kindness of strangers

Is the glass half full, or half empty? Are people terrible, or are they good? These questions, like just about everything, depend on what sort of data you’re working with, which examples you’re focusing on, and where you’re looking. For me, I have to say, I just keep getting smacked in the face with the full and the good.

Us, traveling with twins last year.

Us, traveling with twins last year.

I wrote about dreading our holiday travel with twin toddlers, for example, but our flights ended up going swimmingly. TSA agents gave the girls stickers and smiled and chatted with them while scanning our liquids and swabbing our hands. A family wrangling just one baby called us superheroes as we struggled to fold a stroller and sort out a backpack with a toddler strapped to each of our chests. We sat near people who smiled and told us how cute our kids are instead of huffing that they got stuck near two small children on a flight. And I was seated next to an angel. I mean, her name was Mary and she’s a sheep farmer, and her son’s name was Christian. That’s some pretty heavy symbolism, right off the top. But she also held my toddlers, let them play with her jewelry, showed them pictures of her dogs and her sheep on her camera, and let Claire nap across her lap. Her middle school aged son closed the window shade without asking to keep the sun out of little eyes, and happily watched Pixar movies with us on the iPad. They made the flight to Colorado a pleasure, and finding them as my seatmates again on the way back felt like nothing short of a miracle.

This sort of kindness has been happening to us again and again lately. My iPhone was stolen on our vacation in Florida, which would seem to be a data point in the “people are terrible” column. But then a woman I have never met outside of Twitter offered to give me her old iPhone for free, refusing my offer to pay, saying it was just sitting in a drawer since she had upgraded. I accepted it gratefully, doubly thankful for the blessing of being reminded that for every thief, there is also generosity and kindness.

And then, last week, a crazy thing happened. I got a friend request on Facebook from a stranger with whom I had only one mutual friend. Around that same time, that mutual friend shot me a text: “Missing a wallet?” A delivery driver for a local restaurant had found my wallet run over in the road, picked it up, and given it to the owner of the restaurant, who, used to tracking down people who leave their wallets in the restaurant, set about finding me via Facebook, and, seeing that we had a mutual friend, through him. Not a single thing was missing from my wallet, which I had apparently left on the roof of my car while buckling my kids in. And it was returned to me in a fashion only slightly less miraculous than that time my husband left his iPhone in a Costa Rican taxi cab and it found its way back to him.

Even my casual day-to-day ventures into public with twin toddlers are usually characterized by people holding doors, waving at toddlers, and asking if they can help.

And it’s not just my data set that suggests that people are really good and kind. Today, my friend Kerri has a post up about a random act of kindness she got to participate in. (And I must say, Kerri happens to be one of the kindest, biggest-hearted people I know.) And another friend tweeted about dropping her kid off at daycare for the first time, where a stranger she called an angel gave her a hug and told her “It’ll be OK.” And then another friend on Twitter sent me a link to this piece from the Today show about strangers showing kindness to parents with kids out in public. And yes, I know, there’s a whole lot of terrible and hurt and meanness that also scrolls by my feed and through my life, but in the face of so much good, that’s the part I’m trying to choose to focus on.


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I didn’t have kids to make me “happy” (Thank God!)

A fun little piece of obvious news crossed my radar today: couples without kids report that they’re happier with their relationships than couples with kids! 

To that I say:

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OF COURSE THEY ARE. You know who’s happy? People who get a full night’s sleep most nights. People who can eat a meal without getting up approximately 9 times to fetch things for people who fling food at them, spit out mouthfuls of fully chewed food for no reason, smear food in their hair, and inexplicably like/hate pineapple from one day to the next. People who can just go out of town for a weekend trip. People who regularly get to go to the movies. People who don’t have to schedule sexy times. People who don’t have to wipe any butts but their own. Let’s be real.

The good news is: the ultimate goal of my life isn’t “be happy.” And my ultimate hopes for my kids aren’t “as long as they’re happy.” Happy is fleeting, and happy is an illusion, and happy just isn’t a realistic goal for much of anything. 

Here’s what I want: I want to be satisfied. I want to be challenged. I want to be grateful. I want to be loved. I want to love. I want relationships. I want to have a legacy. I want to make an impact.

All of those things are much more realistic goals for a life, a marriage, parenthood. 

Thank God I didn’t/don’t expect my kids to make me happy. That’s far too much of a burden to place on another person. I do think they’ve already made me a better person, though, and I’ll take that.


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Claire WALKS!

By now, you have probably seen me shouting this from various social media rooftops, but my Claire Bear took her first independent steps with her PT today:

This is HUGE. She has been so motivated and has worked so hard to get to this point. All day at home, she grabs us by the hands and says, “Wanna WAH!” I think she knew she was super close, and now she’s finally done it. And she couldn’t have picked a better day– this morning I logged into Facebook and saw the Spina Bifida Association going on about birth defect prevention awareness and how it’s folic acid week. Stuff like that always makes me a little ragey, because I wasn’t folic acid deficient. My kid just got spina bifida anyway. It happens. It’s not my fault, and it’s not anybody’s fault. By all means, if you are a woman of childbearing age, take your folic acid, to prevent all sorts of possible problems in the event that you should become pregnant. But please don’t labor under the misapprehension that all neural tube defects are preventable– I’ve even heard of misinformed DOCTORS saying things like, spina bifida is 100% preventable, and blaming mothers for their kids’ disabilities. (Best estimates I’ve read say that folic acid could prevent about 60% of cases of spina bifida. It would still exist even if everyone had plenty of FA.)

But today, today there is no raging about folic acid. Today there is just rejoicing and celebrating that my beautiful girl has finally achieved something she has been working SO HARD to achieve. She’s stubborn and tenacious and hopeful, and I truly believe nothing can hold her back.

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