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

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sisterly love

A small, huge thing happened yesterday when I dropped Claire off for preschool.

I was taking her out of her car seat as usual, and she turned to her sister and waved and said, “Bye bye, sissy!” as usual. And she blew a kiss, as usual. And then… she told Etta, “I love you!”

Mark it down in the baby book blog: it’s the first time I have ever heard either one of them say “I love you” to the other one. Sure, they show it– they like to hug and kiss and hold hands, and I sometimes find one in the other’s bed, but this was the first instance of verbal love between the two of them. It exploded my heart.

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wood, smugness, and duct tape

wheelies

Have you seen this hilarious Craigslist post for those “Little Wheelybug” scooters? It cracked me up.

It read:

Do you dream of your perfect European child scooting across your hardwood floors, waving “hullo mama!” as you relax in your Pøang chair?

Then this is the bullshit European baby scooter made of wood and smugness for you.

Our child, a failure in our eyes, did not like it. She looked great posing on it though. So it’s perfect for posting #Instabrags to Fritter™.

It was hilarious to me because it hit awfully close to home. Continue reading

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

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

you’re so sebastian

When my sister and I were kids, our parents didn’t allow us to call other people “stupid.” So we did what any smart kids would do: we created a code word that worked just as well. Our code word? “Sebastian.” Ariel’s very own personal crustacean buzzkill was a natural choice for a couple of kids whose first movie in the theater was The Little Mermaid. “You’re so Sebastian,” we would say to each other, and the recipient would TOTALLY know exactly what we meant. It became something of a family joke, and to this day, my Papa, particularly when he is performing a monologue on behalf of the dog in his special dog-voice, will use the word “Sebastian” to call someone a nitwit.

This is why I was surprised when I saw that the name “Sebastian” has now arrived on the top 50 list of boys’ names. Guess all those people just don’t know they’re basically naming their kids “Stupid.”

 

*Note: if you named your kid Sebastian, I am sure that he is not, in fact, stupid. It’s a great name. But it will always first and foremost make me think “Stupid.” And then it will remind me of “The Neverending Story.” And then I’ll want to put a necklace on my head and pretend to be The Childlike Empress. And THEN it will make me think of twee rockers Belle and Sebastian. The end.

 

PS: Have you “liked” my new Facebook Page yet?