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

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

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

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

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

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

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

this is what spina bifida looks like

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When we found out that one of our unborn baby twins had something called Spina Bifida, I knew almost nothing about SB. I didn’t know if the doctors were telling me my baby would never walk or talk, or if she would suffer constant pain, or even what she would look like. Between my pediatrician husband and genetic counselors, I quickly got a fuller picture of what SB meant, medically, but I remember a very specific hunger for images of what SB would literally look like. In the midst of  what was a grieving process to accept and understand our new normal, I sought out pictures of people, particularly kids with SB. And more than anything else, these images comforted me. I remember being thoroughly relieved to find that people with SB were just like any other sort of people: beautiful, silly, happy, sad, and completely themselves. After seeing some actual images of actual people with SB living life in the world, I could move away from clinical distance from this new SB reality and embrace my growing bond with Baby B– our Claire, as a full and complete person, not a diagnosis or a disability.  Continue reading “this is what spina bifida looks like”

I wish the SBA would shut up about folic acid

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One of the most important things I want to instill in Claire is a confidence that she is healthy and whole, just as she is. Spina Bifida, while not something we chose, has been part of her life from the beginning, and will always be part of her life. We can’t change the past, but we can focus on the present and the future, which are both bright, full of joy and discoveries and yes, also challenges and pain– just like everyone else’s life, too, with or without SB.

What frustrates me is, it seems the Spina Bifida Association doesn’t always share this mindset. I follow them on social media, and I regularly see these kinds of posts pop up in my feeds:  Continue reading “I wish the SBA would shut up about folic acid”

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”

not pictured

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When I was pregnant with twins, I didn’t read a bunch of books about twin pregnancy and what to expect (I read exactly one, followed its diet like the bible, and for the record, credit it with 6 lb twins at nearly 35 weeks gestation). I figured, for the most part, I didn’t need to know what to expect. And if questions came up, I could ask my doctor husband or my actual doctor– it was a good strategy. Instead, I was already worried about raising twins, about how I would make sure they felt valued and loved as individuals, and not a pair, about how I would ensure I had a strong, unique relationship with each. I knew from the start that any efforts at “equality” would be doomed, moreso after one of our kids was diagnosed with Spina Bifida– as a friend said in her LTYM talk, motherhood is inherently a Marxist enterprise, and we parent each according to their needs (at the moment). Comparison would only be the thief of joy, so I would have to accept that perfect equality between what I give to each of my girls at any given moment would just not be possible.

But dangit, that doesn’t mean that two years later I don’t sometimes find myself feeling guilty for any perceived inequalities. Continue reading “not pictured”

a spina bifida update: potty training?

Around my girls’ second birthday, I got some little potties and put them around the house. I’m in no rush to potty train, but I know that we’re getting close to that time, and I wanted Etta to start getting used to the idea of seeing and sitting on a potty. Since Claire, like most people with Spina Bifida, uses a catheter to empty her bladder, I hadn’t even thought about “potty training” her.

I didn’t take into account what an observant and determined and VOCAL little girl she is. Etta doesn’t seem to care much about the potties yet, but Claire has taken notice and wants to use one. She asks to use the potty, and she wants to talk about “going pee pee.” And I have to confess, it kind of broke my heart a little. I know she will never be “potty trained” in the traditional sense, and it felt like for the first time, she wanted to do something I knew she just couldn’t, like I had to figure out for the first time how to make her understand that she’s disabled.  Continue reading “a spina bifida update: potty training?”

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.