Why my child doesn’t suffer from spina bifida

Recently the media shared a story of the Pope blessing a teenager with spina bifida. Seeing the gesture was touching but a short time later when shared by the media I was saddened to see the headlines read, “Touching moment Pope Francis blesses girl, 17, in a wheelchair who is suffering from spina bifida and wants to be an actress”. I’ve lost count of the times that the media refers to those living with spina bifida, or most disabilities, as a person who “suffers”. I just don’t understand why we must lead the world to believe that just because a person is born with disability that they are suffering.

Just over five years ago I first learned what spina bifida was when we learned my son Chance would be born with it. For those who don’t know – it’s a complex birth defect that often requires a lifetime of a medical care. Don’t google it – in addition to hearing that a child may “suffer” from this birth defect you may be horrified to see the images or learn just how many challenges a child with spina bifida may face in their lifetime. Much of the information you find online about spina bifida isn’t encouraging to anyone trying to learn more about the condition. Far too often society learns what is “wrong” with a person living with spina bifida before they are ever able to acknowledge their potential. Most born with spina bifida undergo surgery within the first days after birth and typically spent days to weeks in the nicu. From the beginning they are not “suffering” – they are demonstrating their strength.

Just because a person is born with this birth defect doesn’t mean they will live their life suffering and they definitely don’t need the world to feel “sorry” for them. Often times people learn of the medical challenges that could happen to a person living with spina bifida and they fail to see beyond the challenges to see the beauty that can exist in the life of someone living with this birth defect.

People living with spina bifida – are people just like you and me. They are resilient spirits who have faced adversity. They can lead happy lives and have proven their lives can hold so much promise.

My son has been through insurmountable challenges since he was born – he’s only 4 ½ years old and he’s been through more than many face in a lifetime.  He’s underwent 13 surgeries and has spent 6 weeks of his life hospitalized.

He’s been through hundreds of tests and doctor’s appointments and has spent hundreds of hours in physical therapy.

But let me make something absolutely clear – our son is not suffering from spina bifida. He is living with spina bifida.

Through every trial he’s faced he shows incredible strength and resilience. My son has endured a lot in life – but if you ask him or anyone who knows him – he’s not suffering from spina bifida. Enduring challenges should never be misinterpreted as “suffering”. Through it all – he smiles and reminds us that he is strong enough to live through the challenges he faces in life.

He faces many challenges in his life, but doesn’t everyone? His challenges are just a little different – but he can live through them. He can thrive. He has proven he can survive and live with his spina bifida. Rather than making the world believe that my son is leading some devastating life “suffering” – we need to instead remind the world that he and every person living with spina bifida can live a great life.

In fact, thanks to his spina bifida we find we celebrate life a little more. Every single milestone leads us to celebrate the great victories in his life – and yes, it helps us appreciate life a little more. We don’t have time to feel sorry for all he’s gone through or anything else he may endure in the years ahead. No, we are on a mission to help him learn to live an amazing life with this birth defect. In fact, we’re quite amazed that he is capable of doing many things that other kids his age can’t do.

Yes, perhaps the world needs to hear that those living with spina bifida have become stronger living with spina bifida rather than hearing that they are “suffering” from it. Our kids go through enough in their lives – they don’t need you to feel sorry for them or show them pity or think that their lives are anything less any other person’s life. My son’s life holds amazing possibilities.

Spina bifida is a diagnosis, it’s not what defines a person’s life. As a society we need to see beyond the struggles they face and recognize their successes that do still occur while living with this birth defect. We need to make sure the world knows that my child and so many others born with spina bifida are not suffering from spina bifida. They are living with spina bifida. And ask any family raising a child with spina bifida – these kids are capable of living pretty amazing lives.

If you’d like to see how other individuals born with spina bifida are living with this birth defect please visit the Redefining Spina Bifida facebook page. We’re hopeful to help improve the perception of this birth defect.

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October 22, 2015 - 11:41 am

Taryn Kim Westover - Thank you so much for this post! I too am living with Spina Bifida.
I was born with it in 1955 back when doctors didn’t know much about it at all. I had surgery to close up my spine when I was 5 days old. The doctors didn’t talk about the challenges we would face because they didn’t expect me to live. The only encouragement they gave my parents was that at the most I MIGHT live to see my 18th birthday.
Well, the Lord Willing, 12 days from now I will celebrate my 60th birthday AND what I call my 42 year miracle. I have lived 42 years longer than the doctors said I would.
I also have only had the one surgery at 5 days old. All other surgeries I have had have not been related to the Spina Bifida.
I get around in a motorized wheelchair and have had the blessing and privilege of traveling more places and seeing more things than most people on two good legs!
My main challenge is people who don’t understand my capabilities and who don’t understand disabled people and what they need in the way of accommodations/accessibility.
Thank you again for this post!

October 22, 2015 - 11:53 pm

Melissa Cork - Best article ever. I’m 32 years old (from Australia). I always cringe when people think you ‘suffer’ from Spina Bifida. People always want to feel sorry for you. But why? We are who we are. Well done a great article. Thank you for sharing your story.

October 26, 2015 - 11:56 pm

Kristy - I love your attitude. My son has a couple of medical conditions and I think it is so important to share photos and information so everyone can better understand that life is not your diagnosis.

October 30, 2015 - 8:35 pm

Rudy Bazan - Una de mis mellizas vive con espina bífida, es increíble su fortaleza, nos transmite su alegría por la vida. Acaban de cumplir su primer año de vida.

November 23, 2015 - 4:07 pm

Juan Esteban Salas - A great inspirational site! Not just for the amazing photos , but also for the spirit within your words! Your story is an example of what living with spina bifida must be, both for the people with the condition and their families.

I’m a pediatric neurosurgeon who treats fetal and neonatal patients with spina bifida in Colombia, and let me tell you this: you taught me something that can’t be learned from a medical book, and from now, my patients will never “suffer” from spina bifida. THANK YOU!

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