It Took Me 12 Years To Tell This Story

Changelog: August 16th

One of the best days of my life

One of the worst days of my life

My littlest guys birthday

A bridge to a new reality

The night before I was feeling odd. 34 weeks pregnant. Too early for it to be the baby coming. Went out to dinner for a ‘last chance’ date while the inlaws watched the oldest. Something wasn’t right. Left dinner early for a quick trip to the ER for an ultrasound. They patted me on the head like they had the 6 other times I had done this during this pregnancy, marked my folder with a ‘nutty mom’ and sent me on my way.

Next day…still not feeling good. “Stop being such a hypochondriac”, I remember saying to myself. “There is nothing wrong with the baby. If there was they would have seen it in all the ultrasounds or when they took your appendix out at 21 weeks pregnant. You’re a nut. Take a nap.”

Fell asleep for a few hours. “Maybe I should take a shower?” I thought. The warm water felt great and I made my way down the stairs where Bob was playing with a toddler sized Con. He looked at me with a strange face and said “I think we should go to the hospital”. “Really, why?” and then I felt the revolt inside my body happen. Oh my god! Was I really going into labor? It was too soon. The room wasn’t ready.

Bob called my mom who lived about 20 minutes away but I couldn’t wait. We sat in the driveway waiting for her to get there to take Con. All the doors in the house wide open as Bob had rushed me to the car.

Screaming at Bob on the I-10 freeway to hurry as fast as he could. I knew today was the day. My precious little boy was coming. A little early but OK…we would deal with that.

Got to the hospital and I was now screaming for the anesthesiologist. Where the hell was he? With each contraction I screamed louder for him. Finally a nurse grabbed me by the hand and told me “He isn’t coming. It’s too late. You are going to have to do this on your own. NOW”.

WAIT??? WHAT???? No, no, no, NO, that is NOT the plan here lady. It was my first lesson in learning that Carter had his own plans. Mine were about to become merely an after thought in this grand scheme.

….and then there he was. A little screaming ball of fury being taken over for his apgar scores since he was 6 weeks early.

And then we were jutted into an alternate universe. At least that is what it felt like.

Bells, alarms, lights, hurried codes over the speaker system. There was something terribly ‘wrong’ with the baby. They rushed him out of the room. Bob looked at me and in that brief second our lives irrevocably altered. I remember saying “GO. Go with him. I will be fine”. Because it didn’t matter if I was bleeding to death at the moment (I wasn’t). Carter was all that mattered.

Bells, alarms and whistles gave way to hushed tones, scared residents and quiet tears. It was a janitor who told me what was wrong. In broken English she said the two words that haunt me to this day: spina bifida. What? What was that? I read about that somewhere in a baby book I remember. But my baby doesn’t have that because I had the blood test for it. I had 6 ultrasounds. I had my appendix out for gods sake. There is nothing wrong with my baby.

But there was. At least in the physical sense. Because I can tell you as sure as I know my name that there is nothing WRONG with my baby. He is a beautiful, complete soul who happened to be born with an open spine. He is both one of the three loves of my life and my hero.

Each family, each person all have their own reality. Ours is both the same and different from the many people living with spina bifida. And while, no, spina bifida was not in my plans we try to live each day as if it were merely an after thought in this grand scheme.

This post is the kickoff to a blog hop being sponsored by another site of mine, Spina Bifida Connection. If you would like to read more peoples stories of living with spina bifida or you would like to link to your own post on the subject use the linky below!


  1. wow. I can’t even imagine all the emotions you felt that day.

  2. Oh, Barb! Thanks for sharing your story.

  3. You are truly an inspiration. You have an amazing son and you take such great care of him. Thank you for sharing.

  4. A life changing day, for sure, Barb. I can’t believe you heard from the janitor that your baby had spina bifida – it must have felt so surreal to have commotion and not know what was happening!

    Thank you for sharing this story with the world, and me!

    Sundaes soon,


  5. Barb,

    Such such such a powerfully written piece. And so important that you shared it. You are a warrior.


  6. wow Barb, thank you for sharing your story. I too, am so shocked that the janitor had to tell you. He must have had a kind heart, to venture in to tell you when you were asking for information- something…

  7. I always admire you and your son when I see you together. Such strength and love between you, and now I know how the story started.

  8. Barb, what a heart-wrenching story. You are an inspiration for other moms like me because of your amazing strength. Thank you for sharing this. I know it must have been hard to write.

  9. What an incredible story from an incredible woman with an incredible family. So glad we’re friends.

  10. Wow you are so right. a mild adjustment in the book of life.

  11. This is a powerful story. I really admire your strength, Barb.

  12. I have been wanting to read this since you posted, but your blog is not blackberry friendly. I had a feeling we were missing saying “Happy Birthday Carter!”

  13. Hi there! Thanks for sharing your story. I have a 3 year old who was born with spina bifida although his type is slightly different as he had the large bulging sac but it was thankfully skin covered and could be operated on at 2 months of age. What struck me as so ironic in your story is that I too had EXCELLENT prenatal care but “felt” different. I had many, many ultrasounds and all the blood testing, yet NOTHING showed up as being “wrong” with my son….then he was born…despite the challenges we’ve had, he is the most amazing blessing I could have ever asked for just like I’m sure your little angel is too! :)

    • Thanks for sharing your story too. I think sometimes when people see our kiddos they think, “wow, I am so glad I took better care of myself”. But I know that probably isn’t true. It is just a mom feeling of wanting to shout “I did everything ‘right’” Its almost certainly my insecurity.

      For me it was the fact that he never, ever kicked but would elbow and “swoop” (roll over) that I think made me the craziest. My older one kicked my ribs so much and I kept waiting for that stage with Carter and it never came.

  14. Great post Barb! There are just so many mixed emotions to having a sb baby bu I wouldn’t change it for the world now. We are much stronger than we give ourselves credit for!

  15. Barb – Thank you for sharing your heart wrenching story. You are a strong woman and mother and have endured so much for your child. You are a champion and my hero for your advocacy and dedication to Carter’s health. When I was pregnant, I was always so stressed that my babies were ok. I was so blessed and lucky to have them healthy. I can’t imagine what I would have done or endured if I had gone through the same. I’m here if you ever need anything.