Shelly Burr | My Daughter Has Spina Bifida

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Recently Kristy Williams hosted a book club event featuring Dare, Dream, Do*. Shelly Burr, who was there that evening, decided she needed to put a portion of her family's story in writing.  After Kristy connected us, I invited Shelly to tell her story here.  Enjoy.

“We saw something on the ultrasound.”

With those words, the course of our lives had changed.

In the summer of 2009, we learned that our third child would be born with the severe birth defect spina bifida. A barrage of terrifying facts and statistics flooded in. Paralysis, surgeries, wheelchairs, nonfunctioning bowel and bladder, brain damage, shunts, and the list kept growing the longer we spent with Google.

Seconds, minutes, hours, days passed while we processed the new reality. Never did I think, “Why us?” because, why not us? I always felt that things had been a little too easy, ran a little too smoothly. We were bound to have some kind of “big trial,” eventually, and this seemed to be it, the challenge we always dreaded.

But after those first few dark days of questions, prayers, and pain, everything changed when my mind was led to one thought. Had I thanked God for our baby – a feeling that used to come naturally and often before – in the days since finding out she was going to be born with this disability?

Swiss Alps Els

That question saved me. I offered my prayer of gratitude, and was rescued by the thoughts that came to me. Kaitlyn is not our big trial. She is our child, and we are lucky to have her join us on life’s journey. She will be much more like our other kids than she will be different. She will bring love, and joy, and so much happiness. And, she will still have spina bifida. And, that’s okay.

Even so, the following months were the longest of my life. My doctor told us about a clinical trial in San Francisco for which we might be eligible. They were studying the effects of prenatal versus postnatal surgery on babies with spina bifida. We went, we qualified, and we were randomly selected. As part of the trial, the doctors partially removed Kaitlyn via cesarean section at 24 weeks gestation, and sewed a skin patch onto the lesion on her spine hoping that she could avoid further brain damage, nerve damage to her legs, and nerve damage to her bowel and bladder.

She was then returned to my womb (which was sewed back together) in the hope that she would grow and develop while my body tried to heal and keep her inside; we lasted ten weeks. It’s about as painful as it sounds. No promises were made.

Kaitlyn was born in September of 2009. We loved her instantly. But developmental milestones that had been easy for our first two children were a battleground for Kaitlyn. Damon and Audrey had smiled, and cooed, and rolled, and crawled, mostly on their own. Kaitlyn needed to be taught to do those same things. The feelings of accomplishment and pride that settle into the core of my soul, are so much more significant than if these milestones had been easy.

Kaitlyn’s first steps? They are ingrained in my memory. I was teaching Audrey’s preschool class in the family room of our home. Kaitlyn’s physical therapist Jennifer excitedly burst into the room interrupting our lesson. She steadied two-and-a-half year old Kaitlyn on her feet and told her to walk to mommy. Kaitlyn dragged one foot in front of the other for about 3 steps before I caught her as she was falling forward. It was one of the happiest moments of my entire life.

Vista Hugo Martins

Photo credit: Hugo Martins

During my pregnancy, my thoughts were dominated by all of the sacrifices our family would be making to accommodate a child with special needs. I thought I would become a stronger, more compassionate and empathetic person, but that it would come at the cost of my daily happiness.

How mistaken I was. This little girl brings bright and shiny joy by the truckload. Her soft, smooshy cheeks deserve an award – I feel like every time I kiss them, I’m gaining happiness powerups in a Nintendo game. She sings songs, cuddles right up to me and asks me to play with her hair, worships her sister Audrey, has more Dora the Explorer merchandise than you can find at Toys R Us because Dora is her BFF, takes care of her baby dolls, cooks food in her toy kitchen, and is all around a silly and fun 5 year old who we are blessed to call ours.

Her siblings have learned the invaluable lesson of slowing down. They take their time with her and know that some of the things they can do easily she can also do, but not quite as easily, and not quite as quickly. I have many times observed them playing together as I’m making dinner – Audrey and Damon practicing therapy skills like jumping and tip toes and excitedly encouraging Kaitlyn as she follows directions. I’m thankful for my kids’ crash-course in compassion and appreciation. But what I’m learning is that this new view of life isn’t a consolation prize, it’s a priceless gift.

It has been awesome, and happy, and hard, and painful, and incredible, and heartbreaking, and amazing, and sad, and all the other things that come along with raising children – with an unexpected intensity. The valleys truly are lower, and the peaks are so much higher. And when we are on the top of one of those mountains? We try to live in that moment and remember to appreciate the incredible view.

Shelly Burr grew up in Utah, married a Californian, relocated to New York City, and finally landed in Houston, Texas where she is happily raising her three children in suburbia.  In between soccer games, piano lessons, and dance recitals, she enjoys running, reading, traveling, listening to podcasts, volunteering, fundraising, hosting dessert potlucks, and dating her husband.  You can read more of her story here.

*After reading, “Dare, Dream, Do,” for bookclub, I was so inspired by the stories of other women courageously living their dreams. I realized that I had a desire within me to record our story. To write a book about our experiences during our pregnancy, raising a child with special needs, and the life lessons that we have learned along the way. Whether this book ever sees a publisher is not important. What matters is that I write the story of Kaitlyn and how she changed our lives.

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