There are a few occasions when I take time from my very busy schedule of creating pictures of my fake dead cat, Mr. Sprinkles, doing wacky things to respond to emails. Because, really, is there anything better than this?

Mommy Needs Vodka

That Mr. Sprinkles! He’s a WILY guy!

But on very, VERY rare occasion, I get an email that makes me stop and go, “You know what? Maybe I should stop working on pictures of myself with my fake dead cat Mr. Sprinkles and do something better with my time,” (the feeling never does last)

A year ago today, I got one of those emails.

My now-friend Nikki sent me an email about her 20-week old fetus, who had just been diagnosed prenatally with an encephalocele. Somehow, she’d managed to look past the grisly stories out there about other children with encephaloceles (the fatality rate for encephaloceles is exceptionally high) and had found her way to my mediocre blog.

More specifically, she’d found Amelia’s Grace, the stories about my daughter who, too, had been born with an encephalocele.

Amelia was born with the kind of encephalocele associated with the least favorable outcomes. A posterior encephalocele filled with brain matter. I’d had a standard vaginal delivery. There was no NICU team waiting for her. In fact, no one was waiting for her but a nurse, the doctor and a tech.

In short, everything about the situation surrounding Amelia’s story was bad.

When I wrote Amelia’s Grace, the story of my daughter, I’d never really thought that someone else might find my drivel while searching for something to cling to. Some hope in an otherwise grim situation. Because the statistics, those cold hard numbers about encephaloceles; those are grim:

An encephalocele reduces the likelihood of a live birth to 21%.

Only half of those 21% survive.

75% of those survivors have varying degrees of mental retardation, the severity of defects higher for those who have the brain herniation on the back of the skull.

She, however, she is not grim. She laughs in the face of statistics. She will tell that encephalocele to shut it’s whore mouth.

Amelia will also give her voice to those who have none.

Nikki has been a good friend of mine for a year now and she’s helped me as much as I’ve helped her. Proof that sometimes people come into your life at exactly the right time. I owe her a debt that I don’t think she understands.

Now, I will simply direct you to Lily’s Story, which I have strong-armed Nikki into writing for Band Back Together.

Today is the day that it turned upside down for Nikki and my sweet girl, Lily Grace.

What a difference one year makes.

37 thoughts on “Wednesday’s Child is Full of Grace

  1. Thank you for posting my story, and thank you for being there for me to find. There are no coincidences. Together, we will continue to make light of the darkness. Our girls with show us the way, let’s try not to block the path. xoxox, nikki

  2. She is adorable. I love her feeding the squinkie bug. Our house is infested with squinkies. My 2yo assigns people and pets to them. And offers me ones in my favorite color.

    Any way, back on topic, I am so glad your story turned out so well and I cried when I read Amelia’s Grace. Even though I knew the outcome was good.

  3. Behold the power of The Interwebs! I am so happy that it worked out for Lily Grace as well, and that Amelia’s story is shining like a good deed in a naughty world.

    By the way, I used the story of the John C. Mayer Project in my class the other day when I was explaining why using top Google hits as research options will not always bring you the most relevant information.

    Also by the way, Amelia is adorable (pudgy baby thighs! squeee!) and you sound exactly the way I expected you to.

  4. Amelia rocks my world and so do you. I think you seriously underestimate the fabulousness of your writing. Your write up of Mimi’s story is one of the most powerful pieces of writing I’ve read in ages.

  5. That is so wonderful that you two found each other like that! And such a beautiful story on both ends. You keep rocking it out like you always do Aunt Becky, you touch more people than you realize you silly little blobber you.

    Also? Amelia always brightens my day. Whenever I’m feeling down I totally just watch one of the videos you’ve posted with that laugh and all is right with the world.

  6. Please understand that I love the goodness and am not trying to be a Debbie Downer, but can I please let this out? I just realized that one of the reasons I haven’t been posting on my blog is because I cannot summon the good & light & positive. My son is 5 and still doesn’t talk. He moans and makes noises that are sometimes happy & sometimes sad, you can’t tell if you aren’t looking at the expression on his face. I really want to know what he’s thinking. I’m really afraid he’s not thinking. There. I said it. Thanks, AB.

    1. Yes, Youell, he’s thinking. Maybe not the way you think or I think, but he’s thinking. If he can make a happy expression and a sad expression, he’s thinking. At least he’s thinking enough for happy/sad. So, at least he’s that far. Now, will the outside world ever learn to communicate with him? Dunno.

      You and your boy will be in my prayers tonight. I like the think that my prayers are extra effective because with the creaking and popping of these old knees as I assume the position, I figure it just HAS to get His attention.

  7. So glad you two found each other as the feeling alone just adds to the sadness and fear.

    And my heart goes out to KYouell and your son. I hope he is thinking. I am sure he knows your love. I wish I could offer more.

  8. I was so distracted by the video of Amelia. But I am so Happy that things turned out so wonderfully for Lily Grace as well. But Amelia Kicks Ass and Takes Names. She is a Miracle and everything Amazing wrapped into one little package. So excited she is beating all the odds!!

  9. See? The Interwebs are full of good people, and YOU are one of them. You make such a difference.

    And Mili? She is talking up a storm! Did you get a new therapist? Or is she just finding her voice?

  10. Becky, seriously:
    I love you because you’re funny as HELL. I love you because you inspire us all to take this bizarre medium to new, ahem, heights.
    But mostly I love you because you are completely willing to take the lampshade, no matter HOW funny, off your head, and bring us to love and understanding together when babies and losses and love are the topic. It’s a weird (or at least, weird-ish) thing to say online to someone you’ve never met, but I can honestly tell you I love you. It ain’t rocket science, yo.

  11. ooops and forgot to say… treasure the videos.. we have just started to watch some of the oldies when my girls were that age and they almost make me cry!!! They grow up so fast.

  12. The good thing about the stroke I had back in ’05 is that I haven’t smoked since. The smoke still sticks around, though, sometimes. Reading about Lily Grace is one of those times, that old smoke was really making my eyes water. And yes, even an old retired country deputy likes the happy endings, after a lifetime of people wasting their own God given lives.

  13. Wonderful that she managed to find your site and such a friendship has developed. And I’m so happy for her little Lily.

    BUT, I must also say that I was so completely taken and distracted by Amelia’s chatter! Way to go princess!

  14. Your voice is so soft and pretty; had imagined you with something of a Dietrich sound! But I hope you’ll understand when I say that Amelia’s voice is a thousand times more beautiful. 😉

  15. OMG!! Little princess of the bells has me mesmerized…..She is growing and learning so fast! Beautiful! And Lily’s story was equally moving. But hey was that your fake un-dead cat, Mr.Sprinkles, making a cameo appearance…?

  16. That’s so awesome! Audrey was meserized by the video, and then asked for a graham cracker and a bug, too.

    Also, I love your offhand comment about her brother being upset and hearing Ben say “Who? Me?” I don’t know why, but that strikes me as funny (and a very tween thing to say) 🙂

  17. I will never tire of seeing those videos of Amelia. Goodness, she seems great. The talking is wonderful. I still remember your post when you first expressed your concerns about her speech…and here she is talking so much. Wonderful. And also so wonderful to read about Lily, and how you two could support each other.

  18. Amelia is splendiferous, Lily’s mama has written a fantastic fabulous blog and you, well, you are hittin’ yer stride. I’m so glad you did some CBC interview after you stopped drinking (unless that was somebody else and I found you instead, haaaaaaaaaaaleeeeeeeeeeeeelluia! You are mediocre x 100 plus bonus points for feeding bugs.

    And KYouell? I’m thinking about you (I don’t pray, so that’s the best way I can put it) and your son and hitting your stride and I’m gonna continue to think about you both tonnes and tonnes … hugs from Vancouver!

  19. I so didn’t mean to hijack this post but oh, I have needed this support. Thanks to @Peter and @Karen for you kind words and thoughts when I needed them! And, as always, love you Aunt Becky.

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