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I Am Not Spina Bifida

Updated on September 5, 2016
elayne001 profile image

Ruth, a.k.a. Elayne Kongaika, was raised in the orchard town of Orem, Utah. She married a Polynesian and has had amazing travel experiences.

I am Lily
I am Lily | Source

I am Loved

My grandma said she loved me before I was born. That is truly conceivable, since she was there together with my parents and siblings for my first sonogram. My family was giddy with excitement to discover if they would be adding a new sister or brother to their tribe.

The sonogram

Monitors were well placed so all could see me wiggle around inside my mother’s womb. The technician shared in the exuberance of the little crowd, and started the magic machine which could reveal images of me. Oohs and aahs were uttered as my tiny hand, foot or other little body part was recognized.

Mommy, Daddy, my sisters, brother and Grandma saw images of my cute face, and discovered that I would most probably be a little girl. At first there was so much joy and anticipation, until a sudden hush fell over the room.

What about me?

The tech had noted classic characteristics of Spina Bifida, a birth defect in my spine and brain. All of a sudden, a doctor entered and suggested that grandma take the children to another room, while my Daddy stayed with mother. What had been a very happy occasion turned into tears and worries in an instant. My poor mother lie there emotionally injured.

While grandmother tried to entertain my brother and sisters, a well-meaning physician shared the blatant facts with my parents. My spirit was housed in a broken and bent physical body. He encouraged them to abort me (calling me a fetus), since the likelihood of my being severely handicapped was imminent. What? What about me? My spirit was strong! I would be good and try to not cause too much trouble.

"I'm so popular"
"I'm so popular" | Source

My "condition"

My parents thought about it only for a brief moment, and declared that they could not abort an innocent baby. Just the thought of it (to them) was bizarre and inhumane. They mustered up the courage and determination to raise a less than perfect baby. Years of operations, medical bills, daily cathetering, wheelchairs, were only part of what they faced.

They were given a glimmer of hope that there was a possibility the defect could be fixed in utero, but it was highly unlikely. It was later confirmed that the defect was at L7, so the operation was impossible. My families hopes and dreams for me were sorely challenged, but they never wavered in their faith that my spirit would be strong.

My Grandma loves me!
My Grandma loves me! | Source
Grandpa and Lily
Grandpa and Lily | Source

I am Lily

I am Lily! I was born December 15, 2008 with all my fingers and toes, and an adorable little face with bright blue eyes. My spinal cord had not developed properly, and was partially outside of my back, encased in a little sac. I was adored and loved as much, and even more (out of compassion) than most babies. My family supported me through many years of medical procedures and daily, even hourly extraordinary care.

Now I am five years old. I have my own pink wheelchair, and can go faster than most people can walk. I have great upper body strength developed from many years of pulling myself around by my arms and hands. I love to sing and dance. Yes, I dance in my wheelchair. My parents took me to dance lessons to learn how to be graceful and meet other children like me.

I can do it!

I spent much of my earthly life on the floor, on my skateboard, on the couch or in my hot pink chair. There is also a gizmo called the kangaroo which helps me jump around. I attend preschool and I am very witty. My parents got me a great playground that I can climb by myself and go down the slide.

I have worn braces on my legs since I was tiny, because I have club feet. My upper body is a size larger than my lower body since the lower muscles are not used. My grandma used to pinch my legs to see if I could feel anything. It is okay, because it doesn’t hurt. My grandma thinks I am a bit bossy, because I always tell her what to do, but she usually does it anyway.

I am buff

I love to swim, bowl, dance, sing, play and go to new places.My parents take me everywhere my siblings go. My brother smashes me just like big brothers do. My sisters are loving and helpful to me. So are many other people. I am so grateful for all the people who have helped me to be happy and healthy.

I have enjoyed going to preschool and nursery at church. So many people assist me every day. I have been to Disneyland and loved it. My parents are the best!

I have made so many great friends. Everywhere I go, people watch me. I am so popular! I am strong and even bossy. I am Lily.

I am Lily
I am Lily | Source

© 2014 Elayne


Submit a Comment
  • LindaSmith1 profile image


    4 years ago from USA

    Years ago, I met a family who had a baby with Spina Bifida. Another couple came in the lobby area devistated because their new baby had this condition and they were being pressed to not do anything for their baby. The other couple spoke up and told them not to put that baby in an institution or let their baby go, to ignore the docs. They then pointed to their baby girl and told this couple that they have been told the same thing.They pointed at their daughter, with braces on her legs, holding onto a coffee table, while she walked around it.

  • Phyllis Doyle profile image

    Phyllis Doyle Burns 

    4 years ago from High desert of Nevada.

    This is such a beautiful story about a courageous, outgoing, beautiful little girl. Lily, I love your outlook on life. You have such a lovely smile that lights up your eyes.

    Elayne, thank you for sharing your lovely daughter and her story.

  • profile image

    Ruth Shirk 

    5 years ago from Coleman Texas

    I cannot wait to hear more about Lily's story in the years to come.

  • DDE profile image

    Devika Primić 

    5 years ago from Dubrovnik, Croatia

    Beautiful photos and your story is full of spirit. Your family and Lily are wonderful.

  • 101Ways2Life profile image

    Alana Niall 

    5 years ago from Christchurch, New Zealand

    The story left me speechless. Truly strong-spirited parents and the child - Lily. Very inspiring. Watching Lily's video brought instant smile to my face. I can only imagine how Lily must be lighting up the day of her family by simply being around.

  • RTalloni profile image


    5 years ago from the short journey

    Good for you Lily! And good for your parents, grandparents, and siblings. May you grow to be mature and responsible and all that God intends you to be. In spite of your saucy-cute photo you've grown from a pretty baby into a pretty little girl. Remember that "pretty is what pretty does" counts for everyone and go forward to tell the world your story!

  • Nell Rose profile image

    Nell Rose 

    5 years ago from England

    Oh Wow! what an amazing brave little girl! This was told so well from Lily's point of view, and made me smile, but yes with a little tear too! Wonderful, awesome what else can I say? Beautiful I think the word is! voted all the way! nell

  • JayeWisdom profile image

    Jaye Denman 

    5 years ago from Deep South, USA

    This is beautiful and even more inspiring because it's written from Lily's perspective (even in utero). It's an outstanding tribute to a beautiful girl indeed born with a strong spirit and mind, as well as to her family who love her very much. I read it with a lump in my throat and tears in my eyes, but it is not a sad story. It's a story of triumph! Bravo, Lily!

    Voted Up++++ and shared


  • pstraubie48 profile image

    Patricia Scott 

    5 years ago from sunny Florida

    Lily, you are an inspiration. Having some kind of challenge in our lives often makes us stronger and more determined to do and be.

    And I am so glad your parents kept you on the planet. It is evident that you are bringing joy every where you go.

    It is very nice to meet you.

    Sending you many Angels today ps

  • healthwealthmusic profile image

    Ruth R. Martin 

    5 years ago from Everywhere Online ~ Fingerlakes ~ Upstate New York

    Thank you for this beautifully written hub. My younger brother was born with Spina Bifida. He just turned 28 years old. He enjoys a happy, busy life. He still lives with my parents, but he has many hobbies, one of them is wood-burning and carving. He has sold many beautiful pieces of work. He also entertains his many nieces and nephews (I have 5 brothers and one sister). He helps out a lot with cooking, dishes, and the veggies from the garden :)

  • cfin profile image


    5 years ago from The World we live in

    It's 2014. We all have "something". Myself and my wife lost a child and found out during a late ultrasound. Your words of the mother laying there resonates through my mind. Something I will never forget. That was the worst day of my life. As I said, we all have something, and if our little baby survived with "something" we would be much happier than we are, having received this lifelong scar. Better to have "something" that people perceive as "bad" than to have nothing where something should have been. The only thing that eventually made it through to my wife after many months of sadness was when I told her that the baby couldn't have had a better mom for the time they were alive. That they existed and had a huge effect on us and who we are and how we will treat not just our future kids, but people in general.

    Life is precious and we are lucky enough to be expecting our third child now, having lost our second. Lily seems like such a character and a wonderful child :) So glad to have read this story. We are all fragile creatures and we all have "something" that is perceived as "bad" by someone else out there.

  • SmartAndFun profile image


    5 years ago from Texas

    What a beautiful and inspiring little girl. Thank you for sharing her story.

  • btrbell profile image

    Randi Benlulu 

    5 years ago from Mesa, AZ

    Thank you so much for sharing this beautiful hub of your precious Lily and her amazing family! What an inspiring story and perspective! How very blessed you all are to have each other!

    BTW, the opening with the sonogram gave me goosebumps and all of this should be shared everywhere! As I will do right now!

  • Nadine May profile image

    Nadine May 

    5 years ago from Cape Town, Western Cape, South Africa

    What a great and uplifting story about Lily. I have a granddaughter named Lily, so your title drew me to read your hub. Thank you for sharing. Greetings from Cape Town

  • Jackie Lynnley profile image

    Jackie Lynnley 

    5 years ago from The Beautiful South

    Lily is so beautiful and looks a very strong spirit, I am so pleased she was allowed to live. I hope that right is never taken from any of us. Up and sharing.


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