“Hardship often prepares an ordinary person for an extraordinary destiny.” ~C.S. Lewis
Just over five years ago we learned our son Chance would be born with spina bifida. We were told then that he would be born with complications that would require a lifetime of care – and that so much would be unknown until he was born. I was also told then that God doesn’t make mistakes – even those moments that seemed so devastating and imperfect at the time – had an incredible purpose. Now that Chance is here and has faced a great number of challenges in his lifetime, including recent challenges that at times leave me feeling broken – I am reminded…that I don’t always have to understand God’s purpose, but instead trust His purpose.
Each year since Chance was born I have devoted time to capture moments with other families affected by spina bifida with the hopes that this would would help our local spina bifida chapter, the Spina Bifida Association of Central Florida, and so that it would help the world see the beautiful souls I wish I could have met after we initially received the diagnosis. Five years later I still remember the diagnosis so vividly – and I reflect still at that material I was provided. It’s ashame that in 2015 medical professionals have little to no resources – and that parents can’t be provided with more hopeful resources that do more than just inform them what is “wrong” with a person living with spina bifida. Instead families are left to search google and find horrifying images and medical jargon that only leads people to think of the “severity” of this birth defect. Yes, they face challenges in their lives, but who doesn’t? I’m a witness to seeing the challenges of those living with spina bifida and can attest to the fact that each and every person I have ever met with spina bifida has their own unique beauty that we all deserve to see – especially those parents who are anxious and nervous to greet a newborn baby with spina bifida. So can someone please tell me why in 2015 prenatal resources are virtually non-existent and that images of individuals living with spina bifida are rarely included in resources provided to newly diagnosed families?
Each year I’ve spent hundreds of hours of my time and I’ve traveled hundreds of miles to complete this work. Over the past 5 years I’ve photographed more than 70 individuals living with spina bifida (some multiple times) – with the hopes that their sweet souls might help us create change. That somehow, someway…we could create hope. Has it helped? Have we made a difference? Well, I’ve lost count of the people who have contacted me from countries all around the world saying how meaningful it was to them to see this work. Now I just pray that in time we can share so much of this work so much sooner so that in the moments following the diagnosis families will see the faces of those who live with this birth defect daily – to help them see that living with spina bifida IS possible. Sadly I still to this day learn of the families who are just so frightened and consider or follow through with termination – and though I believe everyone is entitled to their own choice I fear the lack of resources available and the way in which a doctor delivers a diagnosis can have a strong impact on how a family copes with the decisions they are presented. Five years later after coming so close to giving up on our baby boy – he is a testament that God doesn’t make mistakes – his life has had a profound purpose…little did I realize it then but his life has lead me to volunteer my time, energy and heart to this work. None of this would would be possible if he hadn’t have entered our lives. Now I can’t imagine life without him. Nor could I imagine it without the families affected by spina bifida that I have come to know so well.
Five years later I present to you a special reflection dedicated to every family I’ve worked with – I thank each and every one of you for helping me help our local community redefine spina bifida. In the past five years our community has grown and our families have grown closer than ever before. Thanks to every family I’ve worked with we’ve not only helped redefine spina bifida within our local community – so many of these faces have also brought hope to families in more than 45 countries around the world.
So here it is everyone – the 5th year of this work – the 2015 Spina Bifida Awareness Campaign. Thanks to every family who has participated this year – I hope you all enjoy it!
A big thanks to Janet Ramos for photographing Easton and Stephanie for this year’s campaign – she did an amazing job and I’m so proud to work with another photographer who is just as passionate about improving the perception of spina bifida.
Cheers!
I care for such information a lot.
by Amanda Kern
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