we all fall down sometimes, and yet…

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This Spina Bifida awareness month, I’ve been super focused on highlighting the utter ordinaryness of most of our life, even with SB in the middle of it. Because that’s the truth. Most of the time, most of our life feels very very normal. Toddlers be toddlers, which means that I spend my time reading books to both of my girls, feeding both of them meals, carting them both around town, doing up seatbelts, putting up ponytails, snuggling and reading stories and kissing booboos.

And then we go to the park with our friends for a picnic. All the kids swing. All the kids slide. All the kids run and play. But only one of them is constantly falling down, and, it turns out, she’s starting to notice it too. Continue reading

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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

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

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?

sharing is caring

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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.

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She shared with her baby doll, too.

little talks

This girl knows how to stay positive.

This girl knows how to stay positive.

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