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.

Dear me on diagnosis day:

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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:”

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

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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”

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

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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”

coming into awareness

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We’re sitting on the couch. Claire reaches up her dimpled hand and touches the knot just behind her right ear, mostly hidden in her loopy white blond curls. “I have an ouchy.” “Oh baby,” I say, “that’s not an ouchy, that’s your shunt! You have that because you have Spina Bifida. Your shunt helps your head feel better.” “Oh,” she says, “I have a buckle on my head.”  Continue reading “coming into awareness”

why I call myself a #spinabifida mom

Why I call myself a #spinabifida mom
#spinabifida mom tip: a small shopping cart makes an excellent mobility tool at an outdoor Easter egg hunt.

If you read my Twitter bio, you’ll notice that among the facts about myself I chose to include in my scant 140 character allowance, I use the phrase #spinabifida mom.

This means my feathers were somewhat ruffled last night when someone I follow (and like!), whose baby has recently undergone surgery, expressed bewilderment that some moms choose to identify themselves through their children’s illnesses. For one thing, my daughter’s disability is not an illness. It’s not something that we can treat and eventually put behind us. It’s part of who she is and has been since long before she was born. It has shaped our lives in many ways up to this point, and it will be a defining (note I said “a” and not “the”) factor in the rest of our lives. Spina Bifida will mean more surgeries. It will mean more therapies. It will mean doing many day-to-day life processes differently. It will mean concerns about the accessibility of public places and the adaptability of certain activities. It will mean advocacy and activism and acceptance. It’s just a fact that it’s a huge part of Claire’s life, and, because we are her parents, ours.  Continue reading “why I call myself a #spinabifida mom”

watching Frozen with my daughters: disability as superpower and the power of sister-love

My kids are only two, so I’m still not fully in the loop of kid-culture. Frozen largely stayed off my radar during its run in theaters, because I am NOT crazy enough to take these two to a movie in a theater yet, and I didn’t even see trailers because we don’t have cable and they don’t show ads for movies on Hulu very often. I’d see posts in my social media feeds from moms of older kids complaining about watching it for the umpteenth time, or having the songs stuck in their heads, and I even saw a few videos shared that related to the film, like those self-declared good-looking parents lipsynching. (Tip: unless you’re Derek Zoolander, never talk about how good-looking you are.)  Continue reading “watching Frozen with my daughters: disability as superpower and the power of sister-love”

why babywearing rocks, especially with special needs

It’s no secret I’m a big fan of babywearing (that would be the hippietastic term for strapping your kid to your body with some sort of carrier, wrap, or sling)– I’ve been doing it from the start, and even though my kiddos are now giant almost-two-year-olds, I’m still at it. In fact, I just traded in some of my fave carriers so I could get one that works better for wearing toddlers. People see me with Claire in a carrier, especially, and wonder how/why I wear such a heavy kiddo (probably around 30-32 lbs, though she hasn’t been weighed in a while) around, so I figured I’d share why.

Because of her spina bifida, Claire has disability in her lower body. Her legs are weak, and she doesn’t have great sensation in them, either. This means if I want to carry her on a hip, the way most people tote toddlers around, I’m entirely supporting her with my arm. She can’t “cling” with her legs to help support some of her own weight. Where I can pretty easily sling monkey-child Etta on a hip and she clings to me like a little suction cup, Claire is 32 lbs of weight, which I end up trying to support with my left arm. It doesn’t work out. I can barely do it just around the house, walking from one room to the other, or trying to juggle her and fill a sippy cup at the same time. Carriers solve that problem. I can strap her on in a sling or carrier and have the kind of hands-free ease I have with Etta on one hip.

Also, since Claire doesn’t yet walk, and even though she’s close to walking, she likely won’t be strong enough for extensive walking for a while yet, having her in a carrier allows me to hold Etta’s hand and have her walk beside us while also carrying a diaper bag for us to get into and out of places without requiring a stroller. As a twin mom, I have long been pretty dependent on a stroller to go anywhere on my own, so it’s nice to be able to get out without it once in a while.

So, now you know why I’m still toting my tots in slings and carriers!

I figured I’d also share my thoughts on the various carriers I’ve tried over the last two years.

Moby Wrap

wearing infant in moby wrapThere are other wraps out there too, like the Solly Baby Wrap, and even Ergo Baby has gotten in on the wrap game (cool feature: it folds into its own attached pocket), but the wraps we had were Moby. I loved them in earliest infancy, and Etta the colicky newborn spent days and days strapped to us in a Moby. They’re soft, stretchy, and comfy, and though the wrapping process seems complicated, you quickly get the hang of it. I think the stretchy but tight support probably feels fairly womblike for baby, and my kids found it very comfy and soothing. However, the thing is basically just yards and yards of stretchy material, and I never liked putting it on in public because it would basically drag on the ground as I got it on. It felt like a process. It was also pretty hot to wear in a Southern summer after the girls were born. Verdict: If you’ve got a little baby who wants nothing but to be held all the time, this will be a lifesaver. However, the lifespan of a stretchy wrap is short, so you may prefer to skip this type of carrier in favor of a ring sling.

Ring Sling

wearing a newborn in a ring slingSoon after the girls were born, I got some linen, ordered some rings, and made myself a ring sling. I loved it for belly to belly carries when the girls were tiny, and believe it or not, still use the sling with my toddlers to carry them on my hip hands-free. I think ring slings are some of the most versatile carriers on the market, and while learning to get baby in safely and comfortably may seem intimidating at first, it’s pretty easy to figure out (YouTube helps!), and you’ll soon be a pro. Ring slings can be kind of pricey (looking at you, Sakura), but I really don’t understand why. You can easily DIY your own, like I did. Verdict: a ring sling is one of my fave carriers. If you only get two carriers, make it a ring sling and a soft structured carrier like an Ergo, Beco, or Boba.

Mei Tai

wearing baby in a mei taiMei Tais are like a step between wraps and slings and more structured carriers like the Ergo. The one I had was an Infantino Wrap and Tie. A popular but pricier option is the BabyHawk Mei Tai. Pros: affordable, easy to use, fairly comfortable for smaller babies. Cons: I don’t think these are very comfortable with a baby over 20 lbs or so, because you carry all of the weight with your back/shoulders instead of on your pelvis. Verdict: a good, affordable carrier, but not in my top 3.

Baby Bjorn

IMG_8559The Baby Bjorn original carrier is polarizing among hardcore babywearers because many say it doesn’t properly support baby’s hips, even when baby is facing in, and they are often used to wear babies on the front facing out, which many say is also bad for baby’s physical development. Here’s the thing: we had them. We liked them a lot *for a while*. They were easy to get babies in and out of, but by 9 months old, our kids were getting too heavy to be worn comfortably because of the lack of waist belt on the Bjorns– I could feel all of their weight burning between my shoulder blades. It was at that point that we saw the light, sold the Bjorns, and discovered the wide world of better soft structured carriers out there. Baby Bjorn has since released the One carrier, which looks to have adopted some of the features from carriers I like better, but I haven’t tried one, so I can’t speak to them. Verdict: Because there are other carriers that can be used longer and more comfortably (for parent AND baby), I don’t recommend a Baby Bjorn.

Soft Structured Carriers

There are a LOT of soft structured carriers out there. The differences among them are subtle, and I really think it’s hard to go wrong. If there’s a baby store near you that would let you try on different carriers, that may be a great way to figure this out. The things that rock about these carriers are the wide, padded waistbands that shift weight to your pelvis rather than your back, allowing you to carry baby comfortably even into toddlerhood. Also: they generally have padded shoulder straps for added comfort, a sleeping hood and wide, supportive seat for baby, and can be worn on the front (best for smaller babies), or the back (best for older babies and toddlers). Some require extra inserts to do so, but generally these carriers can be used from birth through toddlerhood. I have tried a few and am interested in a few others, so here are my thoughts:

  • 20140318-112643.jpgErgo. Ergo’s soft structured carrier is probably the most popular on the market, and for good reason. They are comfortable and easy to use, and fit a wide range of people– my husband and I each had one, although I believe it is more comfortable on my 5’8″ frame than his 6’3″ one. I still have and use an Ergo with my girls (age 2), but do find that the shell/seat is a little shorter/narrower than is comfiest at this age. Note: if you want to use this from birth, you will need to buy a separate insert for infants. If you don’t plan to do much babywearing after age 2, this carrier could very well be the only carrier you need.
  • IMG_7227LilleBaby. I found a LilleBaby on sale and decided to give it a try. It’s almost exactly like an Ergo with the added feature that it can be used to carry baby on the front facing out. If you have a kiddo who isn’t happy without a great view of the world, this carrier is a great option. Another feature I liked was the higher shell with the optional neck support to support bobbly babies without completely covering them with the hood. It’s just as comfy as an Ergo as far as the straps and waist belt and weight distribution go. It also doesn’t require an extra insert to support babies as small as 7 lbs. I didn’t *really* need this in addition to the Ergo, and neither of my girls is crazy about front facing out, so I passed this carrier on to my sister in law, and I know she will love it.
  • Beco Gemini. I have not personally used a Beco Gemini, but wanted to list it as a quality option here, because I have used their other carrier (below). It looks a lot like a LilleBaby carrier in that it can be worn with baby on the front facing out,  has the extra head/neck support that can be folded up and down, and does not require an insert to carry infants. One thing that sets it apart is the shoulder straps can be worn crossed across the back, which is just a nice feature for keeping the straps from feeling like they’re sliding off your shoulders, and helps support the weight more evenly.
  • 20140318-112658.jpgBeco Soleil. I recently bought a Beco Soleil after selling one of my Ergo carriers. It’s a lot like the Ergo, but the seat is wider/more padded and the shell is taller, which provides more comfortable support for older kiddos. Also, the straps can be worn across the back for more even weight distribution. A Soleil can be used from newborn through 45 lbs, but does require an extra insert for the infant days.  My toddlers and I are both more comfortable in it than the Ergo, but I still like and use the Ergo too.

Other soft structured carriers that may be worth checking out even though I haven’t used them: Moby GO, BabyHawk Oh Snap, and the Tula Baby Carrier.

Ultimately, if I were starting over with baby gear, this is what I would get: a ring sling and a soft structured carrier. I’d use the ring sling in early baby days and for convenient hip carries into toddlerhood, and the SSC for more extended babywearing or for doing things like cooking.

*Note: this post is not sponsored. Every sling I’ve tried I made or paid for. None of these links are affiliate links.

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.