My Daughter With Spina Bifida Showed Me There Is No 'Normal'

The dictionary defines “normal” as conforming to a standard: usual, typical or expected. As a middle school teacher and before becoming a mother of a miracle child with spina bifida, I lived a “normal” life, in a “normal” house, had a “normal” job and “normal” family. I never thought too much about the word, and the use of “normal” part of my vocabulary.

After I learned my daughter, Agatha, had spina bifida at our 20 week ultrasound, my life was no longer “normal.” I was scared to leave my “normal” existence and enter into the realm of the unknown; the life of raising a child with spina bifida. I feared the future and what it meant for my baby girl. After being told by my first doctor to terminate my pregnancy, my world went from “normal” to chaotic. That evening — after diagnosis and bleak understanding about spina bifida — my family came together. We cried together, we rallied together, we prayed together and we were welcomed into the most supportive community: the spina bifida community.

That night, I knew in my heart Agatha would live a happy, healthy life unlike what I was led to believe by my doctor. I knew what I thought of as “normalcy” had come to an end. I began to network with families of children with spina bifida and met with doctors who specialized in spina bifida care. While I still feared the unknown and the fact that my daughter would require major surgery 24 hours after her birth, I knew my new life was going to be filled with joy and hardships, challenges and triumphs, setbacks and small victories that would forever change my life.

After giving birth to Agatha at 11:55 a.m. on April 19 , 2016 via c-section, “normal” was no longer in my vocabulary and no longer part of my life. Agatha spent the first 27 days of her life in the hospital while undergoing four lengthy surgeries; anything but “normal.” I was not able to hold my Agatha until she was 12 days old; once again anything but “normal.” When Aggie returned home from the hospital, she immediately began occupational therapy and physical therapy four days a week. Moreover, we had doctors appointments every other day; far from “normal.”

As I began to adjust to my new life as a mother to the most resilient and miraculous child, I found happiness in my new life. I did not want “normal.” I did not need “normal.” I began to question, what is “normal?” And who would ever want “normal?” Agatha is my everything — my heart, my soul, my inner strength. She does not conform to a standard, she is not typical, she is not usual. She is Agatha, and that is all she ever needs to be.

My family celebrates and cherishes every milestone she accomplishes no matter how small. No one speaks of her delays — rather, we find solace in her strength, perseverance and dignity.

“Normal” has ended in my life. “Normal” has reached its maximum level of existence. Instead of “normal” we need to celebrate uniqueness, differences, individuality and exclusivity. In the diverse world we live in, no one is “normal” and no one should want to be “normal.” Ending “normalcy” brings out true character and specialties that set us apart from one another. Here is where I believe we can find happiness as we release ourselves from the confines of “normal.”

Are you ready to end “normal” and embrace your new existence?

We want to hear your story. Become a Mighty contributor here.

Thinkstock image by: GeorgeRudy

Find this story helpful? Share it with someone you care about.

Related to Spina Bifida

Man in wheelchair.

Why I Don't Let the 'Disability' Label Define Me

As a person born with spina bifida, I could have been labeled as a disabled kid. I don’t actually remember anyone ever saying the word “disabled” when referring to me, though. I have been thinking about that a lot lately and I truly can’t think of a time when someone called me “disabled” until later [...]
Enock with his climbing team.

What Independence Means to Me as a Person With Spina Bifida

As a person who has been disabled my entire life due to spina bifida, I have found I have a different idea of what being independent means to me. I have a lot more friends who have become disabled due to injury than those who have been born into it. As I have spent time [...]
Grandmother and granddaughter.

The Lesson From Granny That Still Guides My Life With a Disability

2017 is a very exciting year for me, but goodness has it started on a low, having lost an incredibly special member of our family. My Granny recently left this world, aged 90, after a 10-year battle with dementia – she fought a very good fight and is now at peace, no doubt drinking some [...]
Enock skiing.

Why I Say 'Yes' to Challenges in My Life With Spina Bifida

As a person living with spina bifida, challenge is part of life.  Although people may see me in a wheelchair and think I have it harder than others, I think everyone has challenges in life. It’s how we face them that really matters. I could just as easily have said “I don’t want to deal with [...]