Christy Everett: And So It Begins

Can you tell me a little bit about yourself and your family?

I moved from New England to Anchorage over ten years ago, for what was suppose to be a short adventure; but much to my East coast family’s chagrin, I fell in love with the state even before I met my husband Nick on a camping trip across the Alaska Range. In the winter of 2004, the year after we married, he and I drove across town at 2:00 am, beyond scared, as we knew our first baby was on his way, four months too soon. Elias arrived via an emergency c-section and spent his first 94 days in the NICU where he underwent heart and brain surgery before coming home. He is now six, and despite his various disabilities that affect his vision, balance, movement, and breath, he has told us he wants to play ice hockey, hike up Wolverine peak, drive a bus, and “go to bed never ever ever!” –and that’s all in the last month. His latest challenge has been adapting to the arrival of his full-term sister, now seven-months old and crawling after all his toys. “Where is she going?” he asks us multiple times a day. “I don’t know,” I say, “I’m not sure where any of us are going.”

How did you find out about the My Baby Rides the Short Bus, anthology?

I wish I can remember exactly where I first read about the Short Bus Anthology, It was either one of my blog readers who told me about it in a comment or I learned about the call for submissions on another Special Needs Mama’s blog.

How did you choose to submit “A View through the Woods?”

Being a procrastinator, I waited till the deadline to submit something and first turned in a short blog post that read as a poem. Lucky for me, the editors wrote back to say they weren’t accepting poetry but they checked out my blog and were willing to extend the deadline if I’d consider sending in an essay. This gave me the opportunity to work on a piece I’d wanted to write ever since Elias’s differences became more noticeable to the general public. (It’s hard to miss a three-year old careening down the street with a sticker-laden silver walker.) I wanted to write a letter to all those women who stared and looked away before making eye contact, in part to vent, in part to teach, and in part to speak to the girl inside me who once mocked a child with CP. A child like Elias.

From Christy’s Blog: Following Elias: And So It Begins

What I failed to mention in my last two posts about Elias’s public tantrums, is that on both days we’d revisited his birth story hours before he later melted down.

The morning before our failed evening visit with our gracious neighbors Elias and I had looked at pictures of him when he weighed less than two pounds and survived on a respirator in an isollette at the Providence NICU.

The next day we visited the NICU, on his request, and our friend who is one of the social workers there showed him where they store the isollettes so he could see the “glass box” that kept him warm.

And maybe its the counselor in me wanting to read too much into his behavior, but I feel as though he is beginning to understand that he is “different”, that his body doesn’t work as well as others. We’ve noticed a recent spike in questions about his birth, the NICU, and his subsequent surgeries that correlates with Olive beginning to crawl.

(Yes, she’s crawling now on all fours)

Along with these questions–“Was Olive in the NICU?” “Was I sick when I was born?” “Did you want to hold me all the time?”–we’ve seen an angry mean side of Elias that never appears during the discussions but later when it’s time to leave the dog park or go to bed or change a diaper.

“No!!!’ he cries as he scowls and reaches his hands out to push or squeeze. Emotionally he is more of a three-year-old than a six-year old, and I know that children need to push boundaries to learn where we end and they begin, so part of me just sees this as a delayed developmental phase.

(Even if he has the vocabulary of a six-year-old and the ripped upper body and strong hands of a boy who uses his arms to walk.)

And yet I worry that his emotions go deeper than not wanting to stop playing, that he is beginning to create a picture of himself, with holes, that he is beginning to understand the disparity between a body that moves with ease and his own.

Why did Olive stay safe in my womb for 40 weeks and not Elias?

He’s not asking this question yet but I need to prepare to answer it, even if I still stumble to explain.

Even to myself.

How is it that I happened to be born with two uteri instead of one?

And two cervixes.

One that failed to stay closed and one that failed to open. Listen to my language here.

Failed.

As if I sold out on my son because he just happened to end up in the womb with the “incompetent” door. And I know I’m hard on myself, wanting to heave all the blame onto my shoulders and carry it around with a big “kick me” sign on my back– but I also know that this doesn’t help Elias make sense of his story.

The whole “whoa is me” thing has got to move out of the way so he can go through his own process of grief and acceptance.

It’s his story after all.

I was thinking recently about the fact that Elias actually died at birth. In another hospital, one that didn’t believe in resuscitating a 24-weeker, he wouldn’t be here today, standing on a stool at our kitchen sink, washing out a Prego bottle, saying, “Look Mom, I made orange water!”

And maybe this needs to be part of his story. The fact that he came back. That he’s here.

And sure, the doctors and equipment saved him at first, but his will to live, his strength, his soul, that’s what brought him home, and what continues to push him forward…

You can buy a copy of My Baby Rides the Short Bus by clicking the link!