children – Page 4 – erniebufflo's south & west kitchen

July 11, 2013

An Etta Update

You know, Etta’s never had an update of her own, though Claire’s had many. So here’s the scoop on our littlest lady.

She’s the littlest big kid I’ve ever seen.

She’s like one of those super concentrated detergent packages, a big punch of personality in a tiny body. She’s in the 10th percentile for both height and weight, and I often find myself calling her things like “Peanut,” “Little Britches,” “Itty Bitty Etta Baby,” and “the Tiny One.” And yet, despite her small stature, there’s no denying that there’s very little “baby” left in this toddler. She’s on the go go go, climbing furniture yet lacking the confidence to let go and walk without holding onto something. In fact, this is a pattern with her, fierce independence paired with strong attachment, which is really how attachment is supposed to work, as I understand it, with a strong attachment giving her the trust to strike out on her own. She likes to play near but not with us, but returns frequently for a hug or to lay her head down on me and have me stroke her hair. She loves trying new things as long as we’re nearby, and she loved a recent trip to the splash park, laughing with almost maniacal glee as her daddy walked with her through sprays of water that kind of freaked her sister out.

I left the room for a split second and she ended up here.

She’s also a total ham. She’s mastered the wave and the blown kiss, and she pairs both with an adorably squeaked “heyyyyyy” or “haiiiiiii” or “byyyyyye,” for maximum effect. Recently we were at a party standing with a group of people. I asked Etta if she wanted to go outside, and she waved to the group and said “byyyyyye!” They all “awwwwed.”

This big personality means very big feelings too. When she is happy, she is very very happy, and when she is sad, she is very very sad. Often, her sadness is related to my thwarting of her plans for mischief and mayhem: why won’t I let her sit on the end tables? Why won’t I let her fling herself off the couch? Why won’t I let her chew on iPhones and remotes? Why won’t I let her turn the Xbox on and of and on and off and on and off? Because I’m the worst.

My tiny tot often has disheveled hair, dirty knees, grubby hands, and a mischievous gleam in her eye. I’m so glad she’s mine.

Coming back for snuggles, with a bottle stolen from sister.

July 3, 2013

Claire CRAWLS!

If you’re following me on Facebook or Twitter or Instagram, you’ve already seen the bragging, but I have to share this with my blog friends too: Claire crawls now.

She’s been trying for a long time, months, and working on her skills in PT, but all she was really doing was lunging forward, ending up on her belly, scooting backward when she meant to go forward, and barrel rolling. She managed to combine those skills to get pretty much everywhere she wanted to be, but she watches Etta, and she knew crawling was the way to go. (Etta’s not walking yet at 15 months, though she cruises like a champ and could let go and walk right this minute if the thought actually seemed to occur to her.)

Then we got the shunt exactly a week ago, which removed a lot of pressure from her head/spine, and her neurosurgeon told us to fully expect faster progress in the mobility department. Which, I’m not saying correlation equals causation, but it sure seems to have worked. Yesterday was the first day her PT noticed her using her hip flexors, and yesterday she finally got her legs into the crawling equation and took off. She’s got forward motion and is also pulling up to her knees using the furniture.

Yesterday with her braces on and her therapist holding her arms, she also took actual steps, demonstrating she has all the components necessary to walk someday. Which just makes me want to say “HA!” to a certain rehab doctor who, about a year ago, after a VERY short exam, and ignoring our statements that Claire moved her legs intentionally, declared she would never walk. (Meanwhile her orthopedists have long said that she would, so we chose to believe them.)

I’m confident that Claire has had these abilities all along. It just took her a while to make the connections and figure it out, and while she may need a little extra help, she gets there. And she’ll keep getting there.

June 25, 2013

surgery for Claire tomorrow

I’m back from an amazing weekend in NYC helping my sweet sister Jessica shop for a wedding dress. Now it’s back to reality in a big way because Claire the Bear is having surgery tomorrow. She’s having a shunt placed to help treat her hydrocephalus (the fluid that builds up in her head because of her spina bifida), which has gotten to the point of causing fluid to build up in her spine. This is called a syrinx, and because it could compromise her mobility, we have to finally do the surgery this time, almost exactly a year after we first thought we’d be getting it done.

I’m glad we could wait this long. Since she’s older, the procedure is much less risky than it would have been on a tiny baby, and that’s always good news. We trust our surgeon completely and know she will be in the best hands. All you lovely folks: please be praying for or sending positive thoughts her way, whichever you do. Thank you for always cheering Claire on. She will be in the hospital overnight, but it should be a fairly quick recovery, so let’s hope that’s true!

April 16, 2013May 24, 2013

the bufflogals’ best baby gear: a one year retrospective

From the top, let me make it clear: no one sponsors me. These are just the things I like after a year of this baby gig. These are all things either we purchased for ourselves or received as gifts at our showers.

Still, I know what it’s like to be hunting blogs looking for REAL information on baby gear, to be Googling “how to register for twins,” totally overthinking the baby gear, so I thought it might be helpful for someone out there to share the stuff that really got us through this past year, as well as the stuff that turned out to be not worth the hype. Let’s start with…

STROLLERS:

The thing I probably obsessed over the most was the double stroller. A double stroller is CRUCIAL for a twin mom, because you basically can’t go anywhere alone without it. I read lots of reviews and lots of message boards before settling on the Baby Jogger City Select. Mostly, I love it. It worked great when the girls were in their infant car seats, because I got the adapters. It was so easy to unfold the stroller, pop on the second adapter, and click the seats into place. I also love how smooth it pushes, how easy it turns thanks to its compact size, the giant basket, and the off-road-able wheels. Dislikes: you have to take off at least one of the seats to fold it, and really both of them to get it to fold down to its smallest size. Also: it takes up almost the entirety of our Pontiac Vibe’s hatchback.

The gals enjoying an early days walk with their car seats snapped into the Baby Jogger.

Baby Jogger with the seats facing backward and fully reclined.

For the last few weeks, the stroller getting the most use is our new one, a MacLaren Twin Triumph the girls got from their Nana and Papa for their birthday. It folds super small, is very light weight, and has worked great for getting the girls into and out of daycare and stores and even on a picnic. It’s definitely a bumpier ride, but the gals actually love that–they like to make little sounds and hear their voices go up and down as they bump along. It’s about a third of the price of a BJCS, and if you had a Double Snap and Go for the infant car seat days, would probably make a great choice as a main stroller, provided you aren’t into a lot of off roading.

Enjoying the botanical gardens in the Twin Triumph.

BABY CARRIERS:

If I didn’t have twins, I have a feeling I’d be a babywearing-obsessed hippie mama. It’s just *so much easier* to strap a baby to your body and go about your business than it is to haul a stroller around. I may get a little jealous of singleton moms who can wear their babies all the time. I’ve tried: a Moby Wrap, a linen ring sling (that I made!), a BabyBjorn, a BabyBjorn Air, a mei tai style wrap and tie carrier, and an Ergo. Here’s what I thought of them:

Moby Wrap: was excellent when Etta the attachment baby was a tiny, clingy newborn. Once I got the hang of tying it properly, we loved it. She always felt super snug and super secure, even when she was super duper tiny. Still, getting it on and the baby in place felt like a bit of a production, and I almost never wore it outside the house. Also: you’re basically strapping a hot water bottle to your body using yards and yards of fabric. It got hot hot hot in the Arkansas summer after the girls were born, and I can’t imagine wearing it a lot outdoors in the heat.
Ring sling: Once the girls were able to hold their heads up and sit on a hip, I loved it especially for hip carries, but it was great from the start, even with a front hug hold with a tiny baby. I wore a baby in it on my hip for an entire holiday party (when they were about 9 months old), and I still use it now that they’re one. If forced to choose between the Moby and the ring sling, I just might choose the ring sling, because while I’ve unloaded my Mobys, I’m still using the sling. I ordered my rings online and made my sling using these instructions.
The BabyBjorns: I loved these when the girls were about 6 months to 9 months. I may have wondered to myself why this carrier has so many haters, and why anyone would pay all that money for an Ergo. I found it easy to get on and off, and easy to get baby in and out of. Being able to face them in or out was especially nice. But by about 9 months, they had reached a weight that really started to take a toll on my back, and the way the Bjorn put all the weight between my shoulder blades wasn’t helping. I have since unloaded the Bjorns.
How you fly with baby twins.
My mei tai carrier was an Infantino Wrap and Tie I got on super sale. I liked it, but not as much as the Moby or Bjorns, so I gave it to a friend. I can imagine it would have had similar limitations as the Bjorns, being hard on my back as the babies got bigger.
The Ergo: like the one ring of baby carriers. If I knew then what I know now, I’d have skipped the Bjorns and the mei tai and just gotten an Ergo. Much like the way a backpacking pack has a waist strap to help you carry the weight on your pelvis instead of your back, the Ergo shifts the weight of baby to a much more natural, comfortable position. I still use this carrier all the time, and I know people still using them well into toddlerhood. Don’t screw around. Just get one. Or, if facing baby outward on your front is really important to you, consider a similarly-designed Beco that offers that option. You can even get an infant insert that allows this to be the only carrier you need from birth through toddlerhood.
A very bundled Etta in the Ergo on a snowy day.

If you are trying to not get ALL THE CARRIERS, here is my recommendation: get a ring sling and an Ergo or Beco Gemini (like an Ergo or Boba with the added option that baby can face out when worn on your front) or Boba. The ring sling will be great for tiny baby days, or when they’re older and you do hip holds, or when you don’t want to haul a big soft-structured carrier around. The Ergo/Beco/Boba will continue to be comfy as baby grows, even into toddlerhood.

OTHER GEAR:

Baby Gowns. Everyone told me I just had to have gowns to make middle of the night diaper changes easier. Except to me, gowns were just always a hassle. Feet were always escaping, and worse yet, the gowns kept me from being able to put the girls in the swing and the bouncer, both of which were the keys to us getting any sleep in the early days. And you know, no matter how sleepy I get, I can still snap snaps or zip zippers.
Bibs. People love to gift bibs, but not all bibs are created equally. After a year, I have concluded that you only need three types of bibs. My first bib love was the Aden+Anais dribble bib. It doubles as a burp cloth and is a great thing to have in a diaper bag for on the go feeding. The second type I loved are just plain terrycloth teething bibs. They were GREAT in the spit-up days, and I still put them on the girls on runny-nosed days (they make great nose wipes that are always handy because they’re around baby’s neck) or on particularly drool-y days. The third, and as far as I am concerned, the only bibs worth buying for your solids-eating baby are Bumkins bibs. They’re cute, they’ve got a handy pocket to catch drops and dribbles, and they’re super easy to wash in the sink because they’re super thin and they dry quickly. Also, you can machine wash them without them falling apart, unlike some of the laminated type bibs we tried. Seriously, don’t waste your time on other bibs.
Aden+Anais bib.

Terry bib.

Bumkins bib.
Swaddles. It’s true that babies love to be swaddled, but not all swaddles are created equally. I tried the Miracle Blanket, but I’m pretty sure it’s smarter than I am, and I could never get it on right–arms always escaped. Similarly, I loved the Aden+Anais muslin swaddle blankets for just about everything except swaddling– it’s not always easy to get a baby swaddled in them correctly. Ultimately, what worked the best for us were the Halo Sleep Sack Swaddles. I even ended up cutting the swaddle part off of one of the sacks so I could swaddle Etta’s arms and still put her into the bouncer.
Swaddled and ASLEEP in their Halo Sleep Sack Swaddles.
The Nosefrida Snot Sucker. Let me be blunt: those bulb syringes you’re supposed to use to clean out a baby nose? They suck. Or rather, they don’t. And when you’ve got an exhausted, germy baby who can’t sleep because she can’t breathe and all you want to do is sleep, you will do anything, even things that seem kinda gross, to get the snot out. The NoseFrida uses the suction you can generate with your mouth to suck that gunk right outta baby’s nose. Couple it with a few squirts of saline before you suck, and you’ve got a magic nose-clearing machine. I promise, there’s a filter and a whole lotta tubing that insures none of that gunk gets anywhere near your mouth, just out of baby’s nose. Baby will breathe easier, and you’ll all be able to sleep. Get one.
THE BABY BJORN BABYSITTER BALANCE SEAT. This is my number one most favorite baby thing. Etta, especially, needs to have the heck bounced out of her to calm her when she’s upset and often to help her get to sleep. I can really make the Bjorn seat bounce with my feet– like, head-bobbing bounce. Also, they’re good looking. I know, we’d all put our kiddos in the ugliest thing ever if it meant less screaming and more sleep, but the Bjorn seats are just really good looking. Even better, they fold completely flat, which makes them super handy in a small apartment or house, and even better for toting them around. When the girls were still largely lumps, we’d take the seats with us to friends’ houses so we’d have a place to park babies while eating and hanging out. The covers are also super easy to remove and wash, and the seats have a high weight limit. We’re still using the heck out of them after the first birthday, and I know we’ll be using them for a while yet, but, thanks to a good design, the girls were also secure in the seats even as little tinies. I am not even the least bit exaggerating when I say I’m not sure we’d have survived the first year with twins without these seats. Best baby gear we own.

Slightly older and enjoying some porch time.

Just last week. Knocks her out every time.

April 12, 2013

Claire Bear: an update

It’s been a while since I updated all of Claire Bear’s fans on how she’s doing these days. Most readers know that she has spina bifida, that she had surgery just days after birth, and that we’ve been sort of waiting to see how much her spinal defect will affect her.

The short answer is: she’s doing great. She’s a chilled out, happy girl who is a bit of a ham. She can charm any stranger with her bright eyes, big smile, and penchant for waving, giggling, and clapping. She is also a very observant little person, and seems to constantly be watching and figuring the world out. Even though she’s not into eating solid food yet, she loves to swipe pieces of it off her sister’s high chair tray, and before she got moved into the older room at daycare, would sit on the mat and swipe toys from smaller babies as they crawled by. She even figured out, on her own, from observing Etta, how to get from sitting unsupported down to her belly so she can roll around to wherever she wants to go. Where I used to be able to count on finding her wherever I left her, now she’s known to roll out of her room and down the hall. They even call her “the mechanic” at daycare, because she likes to roll under all the cribs and appears to be inspecting and fixing them.

Medically, she is doing really well also. She had a looooong day at the spina bifida clinic yesterday, and we saw rehab, urology, and orthopedics. Ortho continues to be impressed with how much function and sensation she appears to have in her legs considering the location and severity of her spinal defect, and the good news from urology is that we don’t have to start using catheters or anything at this point (bladder issues are very very commonly associated with spina bifida). Rehab, formerly a sore spot for us since one doc declared “she will never walk” after a very poor examination even after we said that she supports her weight on her legs for short periods, went OK too. We actually got to show the doctor how she can stand with support, and we got our first prescription for some AFOs, essentially her first pair of leg braces, which we hope will support her ankles and knees and help her learn to crawl, stand, and walk.

She’s been going to physical therapy for a couple of weeks now, and we are so happy to finally have that started. The therapist turns out to be the older sister of a friend from high school, and I have to say I just love her. Despite a very teary first session in which Claire *wailed* the entire time (her stranger anxiety has really ramped up lately– she also recently wailed at ZaZa’s, a local pizza joint, when the most grandmotherly, sweet-looking woman in the world dared to approach her), Claire has realized her PT is pretty cool and has neat toys, and now only cries when tired or frustrated with an activity.

Because Claire needs 3 PT sessions per week, 3 OT sessions per week, and now we’re talking about adding in speech therapy to help with her oral issues, we are working on getting her into a developmental preschool where she could receive all these therapies on site. With another one year old to wrangle, coordinate care for, and generally deal with, taking her to and attending that many sessions per week myself would really just be a logistical nightmare, and we’re so thankful this is even an option, that I could drop her off and know she was getting care from folks who don’t have a single issue accommodating her needs. Much as we LOVE LOVE LOVE our current daycare, the fact that she’s the only kid in her room who can’t feed herself or take a sippy cup is a bit of an issue. Even better, the preschool takes siblings, too, so if I get a job in the fall, Etta could join her. And the best news of all? Claire’s Medicaid TEFRA, a benefit she qualifies for because of her disability, for which we pay an income based premium, which covers basically all of her care not covered by the insurance we get through my husband’s work, would completely cover the cost of the preschool for Claire. AMAZING!

So, now I’m on the hunt for cute shoes that fit over AFOs (I’m thinking a sweet pair of mint green Vans might be my choice), and just generally excited that our sweet girl is finally getting the help she needs to make some progress in the mobility department. She’s starting to realize that Etta can do things she can’t, and it has her raring to go!

April 11, 2013

but which one’s older?

Last night I was reading a New York Times profile of Megan Rapinoe, a soccer star I really admire. The piece mentioned that she has a twin sister, and went out of it’s way to let readers know that her sister is “older by 11 minutes.” Cue the sound of a record scratching in my mind.

I have twin daughters. People love to ask us questions in public, and one of their favorites is “Which one is older?”

Let me stop right here. Say you meet someone. Say it comes up that you were both born on March 28. Would you ask that stranger what precise hour and minute he or she was born? Or would you just say, “Wow, we have the same birthday! We’re the same age!”

I think people ask this question because, like most of our first-meeting questions, we’re trying to “place” people and figure them out. Asking about birth order lets us know which one is supposed to be the bossy older sibling, and which one is supposed to be the attention-seeking youngest. People even seem to believe that the “older” twin should also be the bigger one, as if the 6 lb. size difference that currently exists between Etta and Claire could be attributed to a head start gained by a few extra minutes out in the world. These things are stereotypes at best, and they’re simply not useful in the case of twins, and, I believe, can be harmful. It attempts to impose a hierarchy where none exists.

I have heard about “older” twins lording it over younger twins, and about parents who truly treat their twins as if there is some sort of inborn difference that results from what is essentially the luck of the draw. Wherever an egg implants in the uterus, the twin closest to the “exit” is born first. And in the case of a c-section, isn’t it just whom the surgeon grabs first?

In a society that loves to label people and to lump twins together, I want my girls to feel loved and supported for the individuals they are, not shoehorned into some sort of role, be it birth order, or gender, or religion, or whatever. I don’t want strangers deciding that one is “the bossy one” because she’s “older” or something. I’m even thinking I may just keep mum on the whole thing if asked. Because really, from the moment of conception, their cells have been dividing the same. The entire time I was pregnant, they were the same gestational age. They still are. Who was first pulled out into the sterile brightness of the operating room really doesn’t matter much to me.

April 8, 2013

Etta and Claire’s First Fiesta

Well, it’s official. My baby girls are now leaving the baby stage behind and headed toward toddlerhood, as they are ONE! I’d be sad about how quickly time has passed, and continues to pass, but they are mostly so much fun right now that who can be sad about that? They’re exploring and learning and growing and really coming into themselves personality wise. They interact with each other more than ever, and their relationship is so cool to watch. Etta will be walking any day now, and we hope Claire will be catching up soon, as she’s getting started with PT and OT (I promise a complete Claire update soon). Basically: having one year old twins is just crazy and busy and cool, and I don’t have time to be too wistful.

We celebrated the first year of their lives, and the fact that we survived it, with a fiesta full of people we love and who love us. My fashionista sister not only came all the way from Nashville with her new FIANCE and two pugs in tow, but she also took lots of pictures with her big fancy camera. So, now you get to share in what was a truly lovely day, despite gray, drizzly skies that forced what was supposed to be a back yard party indoors. Not that location matters much when you have a margarita machine, you know?

February 5, 2013

nothin’ says lovin’ like something from a jar

It’s hard to believe the Bufflo Gals have gone from this:

To this:

And as they’ve grown, things have changed with the way we feed them around here. Some things have worked great, others haven’t worked out.

I really wanted to make my own baby food.

And then I met my babies. One wants nothing to do with being spoon fed (as I mentioned in an earlier post) and the other vomits the minute she tastes my homemade food. Not just spits it out. Vomits.

At first, I was sort of offended by this. I thought I had a picky baby, since she would happily gobble down jars of purees both veggie and fruit, and then immediately gag and choke on my homemade stuff that, to my eye, seemed exactly the same as the stuff in a jar. In fact, I remained irritated and offended by this for a few months.

And then I finally googled “spina bifida texture issues” and learned that this is common to many babies with spina bifida, and often requires occupational therapy to fix. And then I felt like a jerk.

We’re looking into our OT and PT options and will be getting a referral soon, but in the meantime, I have accepted that homemade baby food is just not our thing. I can make a few very thin varieties that she will eat (like tomato carrot!), but, since straining every puree through a fine mesh strainer is a huge hassle, I will just be buying jarred purees for Claire. There’s a huge variety of organic Earth’s Best foods available, so that’s mostly what we’re going with. I even got over my aversion to pureed meat, because if she’s gonna be on these things for longer than average, I want to let her have some proteins, and the only other option is lentil dinner.

Meanwhile, Etta is doing a sort of half-assed version of Baby Led Weaning. I haven’t read the books, but I’ve read about it on the internet, and, like most of the rest of my parenting, am sort of doing what feels right. She gets soft chunks of things cut into pieces she can hold in her fist. Sweet potato, pasta, carrot, watermelon, cantaloupe, cheese, and toast are all favorites. It’s going pretty well.

Etta loves eggs. Or did. Until she had an allergic reaction this morning. No more eggs for a while.

Next step: transitioning from formula to milk in about a month, and also trying to transition from bottles to sippy cups. Anyone have tips on that? Both of my girls still have issues with fast-flow nipples, and they nearly drown in sippy cups.

She'll gnaw it, but she won't drink from it. — She’ll gnaw it, but she won’t drink from it.

January 23, 2013

time flies: a nursery grows up

It’s been months since I posted. It turns out life with twins as a grad student is a little busy, and then you add in the holidays, and you end up with a bit of a hiatus. I also think I’ve sort of been stuck in this rut where, unless a post is some sort of profound meditation on life and parenthood and whatnot, I don’t post it, and frankly, inspiration isn’t easy to find for the sleep deprived whose days are an endless cycle of feeding, changing, snuggling, and playing with babies. So, I’m going to try to get back into posting with less pressure on myself for every post to be some sort of major epiphany.

I figured I’d start with showing you the girls’ room lately, which has gone from a baby space to a space that better functions as a twin toddlers’ room. We’ve changed it around a lot to meet their needs as they are now very nearly ten months old. I know. Two months away from ONE YEAR. It’s insanity how the time has both crept and flown. (You can find the original nursery reveal here.)

I wanted the girls’ room to be more of a play space as they are now starting to be mobile and into everything, and I wanted them to have a safe space to explore. They got a lot of awesome toys from friends and family for Christmas, so we desperately needed some toy storage. Luckily, my husband is a super handy guy, and he built something amazing after seeing a few of my ideas on Pinterest.

To make space, we took out the futon and put in a secondhand chair. I will say, I am SO GLAD we had the futon for the first 8 months. Just to be able to lie down in there, or to rest the babies on either side of me in Boppies and feed both at the same time, was wonderful. I highly recommend a bed or couch in a nursery.

Anyway, here’s the space now, with before and afters for comparison.

Then:

Now:

Then:

Now:

Here’s a closeup of the new toy storage, built by my awesome husband!

The girls can crawl right up and grab blocks and toys out of the bottom bins, and if they’re sitting up, they can reach the shelf. As soon as they’re pulling up, it will be even more accessible. It was important to me that the toys be in view so they could easily see their options and get them for themselves. I had a feeling this would work better than a box or bin, because stuff on the bottom of a bin would be forgotten and never played with.

Then:

Now:

Here you can see the bucket we got to store stuffed animals, as well as one of my favorite things in the entire room, the canvas with the Vonnegut quote. It was a gift from a friend I met through Twitter, a “you survived” gift after all I went through getting the gals into the world. It is from a story in which a character is delivering a baptismal speech for twins, so it’s super apt. It says, “Hello babies. Welcome to Earth. It’s hot in the summer and cold in the winter. It’s round and wet and crowded. On the outside, babies, you’ve got a hundred years here. There’s only one rule that I know of, babies– You’ve got to be kind.” I think it’s a great rule.

Overall, the girls have the best-decorated room in our house, and we still haven’t bought a single new piece of furniture beyond the cribs, which were a gift from their grandparents. As I type, the girls are playing in the floor and I’m sitting in the chair.

October 15, 2012

Awareness

I found out today that October is Spina Bifida Awareness Month. My first thought was: what a crap choice in awareness months. I mean, everyone knows that October is Breast Cancer Awareness Month, as pink has pretty much blanketed everything we see.

But then I thought, well, it’s just as well, since I’m generally skeptical of “awareness” in general. I mean, I’m not usually sure of what it accomplishes. Half of the pink I see this time of the year seems to have no real point, as most of us are aware that breast cancer exists, and the pinkwashing is often unaccompanied by anything about breast exams or early detection or risk factors or anything.

I guess people are less aware of the realities of spina bifida. SB is a congenital defect of the “neural tube” which is the part of a fetus that eventually becomes the baby’s head and spine. Claire’s neural tube didn’t close properly, and when she was born, she had 4 centimeters of her spine visible from the outside. As a result of this defect, things like nerves weren’t hooked up properly, so she has/will have certain amounts of disability in her legs, bladder, and bowels, in addition to hydrocephalus, or fluid building up in her head (which for many people with SB requires surgery to place a shunt and drain the fluid, though we haven’t had that yet). While her spinal defect was one of the more severe types, she seems to have good enervation and musculature in her legs, and her doctors and physical therapists believe she will walk and will only need braces to support her ankles, though some people with SB require more extensive bracing or even use wheelchairs.

I certainly didn’t know all of this or really much about SB at all, and it really wasn’t even on my radar until my birthday last year, when we went in for a 20 week ultrasound, excited to finally learn our babies’ sexes, and instead learned that the baby we’d later name Claire had SB. It was a really scary, sad day.

But the thing I needed awareness of that day wasn’t just “spina bifida” as some vague concept. I needed to be aware of the beautiful reality that would be my daughter’s life. Yes, we both had a rocky start. She had surgery at two days old. She was separated from me for 9 days. She was in the NICU for two weeks. She had to stay on her belly for 6 weeks while her back healed. But despite all of that, she’s really just a baby. They’re all very needy. They’re all very fragile. They’re all very tiny. They’re all amazing little creatures. If you looked at my two girls today, you might not be able to guess which one has SB.

If I could go back to last December 16 and make myself aware of anything it would be this: Claire is beautiful. She is funny. She is sweet. She has a radiant smile. She loves to eat. She loves her mama and daddy. She is exploring and learning and growing every single day.

I was so worried about all the ways she’d be different from her able-bodied twin sister, but the reality is, they’re both just babies. They are completely different and yet so very much the same. And almost all of my worrying was completely unnecessary. That is what I needed to be aware of: that there was nothing to be afraid of.

So, no, you likely won’t see NFL teams raising awareness for SB this month, or yellow covering all your favorite products in the name of raising funds. And while you may not personally know anyone affected by SB, now you know a little more about our story, and a little more about my baby Claire, who is special, just like everyone else.