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

IMG_3745 - Version 2

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.

I wish the SBA would shut up about folic acid

IMG_9307

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

IMG_8296.JPG

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”

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.

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.

inspiration?

20140218-090707.jpg
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.