I remember when the doctor so non-chalantly said, "Your baby has Spina Bifida." I promise you, I looked at my husband, with a shoulder shrug, like, “Oh, okay,” and then turned to the doctor and asked, "Well, what's that mean?" I'm not sure what we thought it meant, but we were not ready for the diagnosis we were given. He explained to us what spina bifida was, and that it would need to be surgically repaired. Instantly the tears poured out. How could this be happening again?

My first born, Sophia, now 8 years old, was born with a congenital heart defect. She has had three open heart surgeries, so far. I guess we were prepared that something could be wrong with his heart, but his spine? Something so completely opposite, yet just as important. I remember feeling like I had failed again, as both a woman and a mother. How was my body not capable of forming a baby the way it was made to do? Both with Sophia and Sebastian, ironically, pieces so different from each other "didn't connect." I just couldn't grasp the concept, no matter how hard I tried.

The doctor continued to explain to us what "Spina Bifida" meant, and all of the hardships that come with it, such as: not being able to walk, not being able to control bladder/bowels, a completely different diagnosis of hydrocephalus (which also needed surgery) and just this over all poor quality of life. A quality of life so bad, that 70% of people choose to abort their unborn child when given the diagnosis. We were pressured over and over.

“Get an abortion.”

“Your time is running out.”

“You know there’s a deadline on these things.”

“He’s going to have poor quality of life.”

“He’ll be just laying still all of his life.”

“No head control, never sitting independently, never walk, paralyzed.”

At every appointment, this is what we heard.

There are also many different diagnoses that followed. He has Myomeningocele Spina Bifida, the most severe form of Spina Bifida. It required back surgery the same day he was born. Sebastian also has Hydrocephalus (a build up of fluid on his brain) that required a brain surgery the day after he was born. They put a VP shunt in his brain to drain fluid into his belly. He also has Arnold Chiari 2 malformation, which basically means part of his cerebellum and brain stem extend into the back of his neck. He has sensory processing disorder, and he was diagnosed with failure to thrive because he is much tinier than your average two year old.

He now walks with arm crutches or ‘sticks’ as he calls them. He wears braces on his feet because he can’t feel them and they help him stay sturdy. He also uses a walker for longer distances. Just last month, he was invited to compete in his first adaptive sports event. He competed in the toddler games that included a long jump, a race, and a version of javelin.

Despite all of the challenges thrown at him, Sebastian is so awesome. He is like any other two year old. He is kind, he is funny, he throws temper tantrums, and he gets into trouble. He is more ‘normal’ than not. I am so thankful and so blessed to be his mom. Sebastian is such a fighter. In just the short two years he has been alive, he has already shown the world that nothing is going to stop him. He is walking, he is thriving, he is stubborn, he is head strong, he is determined!

He is not his diagnosis. He is so much more. No matter what is thrown our way, I will never give up on him. I will never give up my faith in our God and I will never let 'can't' be a word in our house. Anything is possible and Sebastian is living proof of that! I know that he has a much greater purpose on this Earth, and

we can’t wait to see what it is!

To learn more about Sebastian and follow his journey, follow @awalkwithsebs on Instagram!

we can’t wait to see what it is!

Connect

Explore