Wednesday, October 10, 2012

Spina Bifida Awareness Day 11 Taylor's Story

Like most other moms, I found out my daughter Taylor, who is now 18 months old, had Spina Bifida at her anatomy scan. Congratulations, you're having a girl, oh & by the way, here's some depressing news for you. Fantastic. Ok, maybe not entirely like that, but that's what my brain
formed in the madness.

Taylor is my only child, & as a new mom to a special needs child, I thought at times that I was way in over my head. I questioned if I would be able to do this, mostly on my own, & if I would actually be a good parent.

I was angry & bitter when I found out the news that my daughter had Spina Bifida. I thought maybe I could have done something wrong while I was pregnant, & wondered if I could have prevented it. What are the odds of having a child born with a birth defect? In Taylor's case, it’s about 1
in 1,147. But then I sat & thought about it, I have a 1 in 1,147 amazing child. I'm her mom for a reason, I can love her unconditionally like no one else can, & call me selfish, but I'm so glad she's all mine.

Our journey with Spina Bifida is just that. A journey. It doesn't define who she is a person or us as a family unit. She is so much more than the label. She is astounding. Her sweet smile will melt your heart, & everyone that meets her falls in love with her. She loves her Backyardigans, she
twirls her hair when she's sleepy, & she likes to try to grab your mouth when you're talking to her if you're in her line of fire.

The amount of strength & determination this child has is unbelievable. She has been thrown so many curve balls in her life with Spina Bifida, that I wont really go in to because it falls under the worst case scenario, but it doesn't hold her back. It doesn't make her any less amazing, and it
definitely doesn't put any limitations on her.

To any new mom going through this crazy world of catheterizations, braces, shunt revisions and therapies, don't get lost in the madness. Don't let it consume you. Our day to day lives are bursting at the seams with Spina Bifida. Whether it's doctor appointments, cathing schedules, medicines, therapy visits and latex precautions, our whole world revolves around Spina Bifida. It revolves around our kids.

My whole world revolves around my daughter.

Once you choose hope, anything is possible.


  1. Awe! Steph!! This was beautiful!!

  2. love it...made me cry. That is how all good moms feel about their babies.

  3. Awesome mommy of a most awesome little girl!!

  4. Steph you really are truely amazing and Taylor was gave to you for that reason. I love you guys so much :)

  5. Yes, all good mother's feel this way about their kids. But, it's a different world when your child has a birth defect (especially one as severe as Taylor's) I'm a mother too, my son doesn't have any birth defects so I can't say I understand EXACTLY what you're going through. Although, my best friends son was born with one I do know what she has had to deal with, and how hard it's been for her and her other child. My heart goes out to all parents who have to deal with any issues that their child may have, but I don't want to "feel sorry" because as you put it, "she's special." And indeed she is! Just as all children are! You're so blessed and lucky to have been given this child, and God specifically placed her with you because he knew you were the perfect one to give her all that she needs in life. I couldn't begin to imagine what it's like to not be able to do the things with your child that other mothers get to experience. But, you have a story all your own and that's amazing! I applaud you and all other special needs parents who struggle everyday to give their child the best life possible, and to beat down those sterotypes. God bless you all, and miss Taylor is in my prayers! xoxoxoxo


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