Parenthood – Page 6 – erniebufflo's south & west kitchen

October 6, 2014

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

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.

October 6, 2014

this is what spina bifida looks like

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”

September 24, 2014September 24, 2014

I wish the SBA would shut up about folic acid

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”

September 10, 2014

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?

September 8, 2014

sharing is caring

See that stunningly gorgeous, extremely sticky kid right there? She’s wearing a stained tank top and no pants with skinny legs stuck into new red high top sneakers her daddy picked out for her. I sliced her up a delicious peach as part of her lunch. And you know what that magnificent child did? She shared it with me. She brought over two pieces at a time, running in those little high tops from her tiny table to my spot on the couch, handing me one piece, and devouring the other with a smile. Her eyes lit up every time I said, “Thank you, baby!” She grinned every time I said “mmmmm.” When we finished our slices, she ran back on crazy legs to bring more.

This kid is 2 years old and she knows the secret to life: the best things are only the best if they’re shared. I’m so glad I get to share all my best things with my Best Things.

September 4, 2014September 4, 2014

little talks

Most days, as I drive her to preschool, I hear Claire’s sweet little voice giving herself a pep talk in the back seat. It goes something like this:

“Claire Bear be OK. Mommy come right back. Daddy come right back. Etta come right back. Claire Bear be OK. Claire Bear see friends. Claire Bear see Miss Freddie. Claire Bear eat snacks. Claire Bear go outside. Mommy come right back. Claire Bear go outside. Mommy come right back. Mommy always come right back.”

By the time we get to school, she’s psyched up like a player for the big game. She waves bye bye to her sister and me. She walks happily into her classroom, where she will see her friends and beloved teachers, eat snacks, play with toys, sing songs, read books, work hard with her therapists, and then, at the end of the day, where her mommy will come right back to her. Continue reading “little talks”

September 2, 2014

so, you just found out you’re having twins…

Dear couple staring in disbelief at an ultrasound image of TWO babies,

Hi. You might be feeling a lot of feelings right now, and those feelings may be giving you other feelings too. Like, maybe you’re a little bummed out and the difference between how you feel and how excited everyone else seems to be about this twins thing might be making you feel a little guilty on top of the whole feeling bummed thing. I know.

Continue reading “so, you just found out you’re having twins…”

August 25, 2014

coming into awareness

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”

August 6, 2014

knowing yourself

“Night night.”

Anyone who’s hung out with Etta knows what those words mean. She is D-O-N-E. When she comes over to me, wherever we are– zoo, story time, splash pad– and says “mama, night night,” I pack it in and we jet. Because apparently, my tiny tot knows herself well, and she lets me know when she’s reached the point of needing to get home and get to bed for a nap ASAP. Continue reading “knowing yourself”

July 25, 2014August 29, 2014

feeling the love

Yesterday afternoon, something I’ve waited actual years for happened:

My child said “I love you, mama.”

Claire faces — This beautiful funny girl with these adorable curls LOVES ME! How lucky am I?!

Etta and I had just picked up Claire from preschool, and we were driving to the gas station when she looked up from her snack (peanut butter cookies), caught my eye in the rearview mirror, and said, “I love you, mama.” Pure. Magic. I tell her I love her all the time. I sing her a little song that goes, basically, “I love my Bear Bear, my Bear Bear loves me.” But I’ve never coached her to put those words together, wanting it to be truly her idea when she finally said it. And then she did. And I melted into a puddle and seeped onto the floor and still somehow managed to type a blog post.

I know it will be a while yet before my Etta girl puts those magical words together, as she’s been on her own little path, speech-wise and has only just recently started putting words together into phrases. Some notable Etta utterances lately: “Uh oh, I broke it” (her perfect first sentence), “Trolley, where are you?”, “My hands are dirty,” and “Otter, come here.”

I just love the things they say, and I’m high on the love from my Claire Bear, especially.

I’m also feeling the love because my husband and I will be celebrating our 8th wedding anniversary on the 29th and are headed out of town this weekend for a little getaway road trip, just the two of us. My bags are packed, and I am so excited to get to have this time together. I’m feeling the love all the way around. I just love this little family of mine.