Choosing life against all odds

This morning, my Facebook timeline was filled with stories and photos of a couple who gave birth last night to a baby boy named Shane. These young parents found out in the early stages of their pregnancy that Shane had a neural tube defect called anencephaly, a condition that is incompatible with life.

They had two options at that point: abort their baby or carry him to term. They chose the latter, and they dedicated the remainder of their pregnancy to checking items off #shanesbucket list: going to the zoo, baseball and hockey games, trips to the orchard and New York. They chronicled all of their adventures with Shane on their Facebook page, Prayers for Shane, and they never gave up hope that Shane would come home with them from the hospital.

Baby Shane died peacefully in his mother’s arms at 6:15 this morning. My heart aches for this family, yet I am so glad that they chose to carry him to term and to celebrate his life in such a powerful way.

When I was pregnant with Ruby, doctors told me that there was a very high likelihood that she wouldn’t live to take her first breath. My perinatologist strongly suspected that Ruby had Trisomy 18, which causes numerous issues including heart defects, and has a very low rate of survival (she was wrong). I was told not so subtly that I could have an abortion up to 24 weeks, which I obviously declined. I had already made up my mind that regardless of what disorder Ruby had, I would carry her for as long as my body would allow, and I would love her whether she lived a minute, an hour, a day or 100 years.

This choice might seem heroic, but let me tell you, it was purely selfish. I had grown to love my baby girl with all of my heart and I wasn’t ready to let her go. I wanted to feel her kick for as long as I could, and when she was born, hold her in my arms, kiss her lips and tell her I loved her. I wanted to give her a chance to live. And if she died, I wanted to be there, whispering in her tiny ear that she was the prettiest little girl I’d ever seen and I’d spend the rest of my life waiting to see her again. I wanted to know that regardless of what happened, that I would never have any regrets.

I feel so blessed that our story has a happy ending, but my heart breaks for parents like Shane’s, who hold onto life for as long as they possibly can, only to have it taken away. The one thing I know for sure is that his parents will never have any regrets for choosing to carry Shane to term. Because a single moment of life can be cherished for a lifetime.

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Now and then

Ruby’s birthday is nearly a month away. It’s hard to believe that I will soon have a 10-year-old little lady living under my roof — a girl who has defied every single odd and overcome every challenge placed in front of her.

Looking back 10 years, it’s hard to believe that we are ALREADY here. My pregnancy was short, but it seemed endless, and the first year of her life was so full of challenges that it seemed like an eternity before I surfaced from the newborn fog. Then, suddenly and unexpectedly, one day, life actually became pretty easy.

Sure, maybe it’s not easy by typical standards. Yes, I have to help Ruby with certain things that other 10-year-olds don’t need help with. I need to get in the pool with her at birthday parties (EEEEK), and help her steer the cart at the grocery store so she doesn’t take people out in the aisles. Her para has to film her school concert practices and send them to me so we can practice extra hard at home, just hoping that she will remember the hand motions during the show. And for as much as we’ve tried potty training over the years, it’s just not sticking. I’m not saying woe is me here — these are just the realities of raising a child with special needs.

1907348_10152109503038388_4300854102487122553_nBut this girl who doctors said wouldn’t talk, walk, or do much of anything at all — this girl has conversations in Spanish with Latinos at authentic Mexican restaurants, she knows how to put her shoes on the right feet all by herself, and she knows every single word to every song on the radio. Her favorite past time is calling people out when they say something wrong (how dare I call her boots SHOES!) and she tells me every day when we get home that the buttons on her coat are “kind of tricky.” She is so loved that her entire third grade class competed to see who could create the best “cute queen” crown for her. THIS little girl has an amazing personality and she’s hilarious, too. Take our conversation this morning, for example:

Ruby: “Mom is it going to be sunny today?”
Me: “No, I think it’s going to be windy.”
Ruby: “No, it’s going to be sunny.”
Me (now messing with her): “No, it’s going to be windy.”
Ruby (now messing with me): “Don’t say windy again!”
Me: “Okay, fine it’s going to be sunny.”
Ruby (now laughing): “No, it’s going to be windy!”
Me: “Ahhhh, you stinker!”

This girl is nothing like what doctors predicted she’d be. She’s a miracle and a true testament to the power of faith and love. It might not always be easy, but let me tell you — it’s always worth it. And I wouldn’t want my life any other way.