“You can make plans, but the Lord’s purpose will always prevail.” ~Proverbs 19:21
I know I have quite a few people anxious to see some of what I’ve been working on for part of the last month and a half. I’m quite excited to finally share the entire 2012 spina bifida awareness campaign that I’ve been working on for the Spina Bifida Association of Central Florida. I know a lot of the images from last year’s campaign were memorable amongst the spina bifida community, but I think there may be some who never caught wind of the work I’ve been doing until this year when the campaign was awarded the outstanding community service award by the National Spina Bifida Association. Over the last month or so I’ve gradually posted a few images I’ve been taking, but tonight is the first time I’m sharing the campaign in its entirety.
Over the last month I’ve found myself reflecting, much like I did last year. Just over two years ago we learned our son Chance would be born with spina bifida and we were frightened of all the things that might be wrong with him or how many challenges he and our family would have to endure. I didn’t quite understand why on earth our family continued to be challenged as we have been. I still recall those heartbreaking moments so clearly of the days where we were uncertain about so much and truthfully faced many moments where we wished we could have given up. As I find myself reflecting, I pray that this work I’m doing helps give others a little hope…the type of hope I wished I had two years ago. No, I never wanted to give up on my son…I just wished I could have seen back then what I see now. I’m still so thankful for the thousands of people that prayed for our family two years ago…yes, there’s a power in prayer. I still remember the day so many of you were out there praying…and I was busy doodling mindmaps to help me make sense of the decisions we were faced with. Perhaps it was a little more torture than I needed to put myself through, but I know those emotions and fears are ones virtually every family faces when they learned their child will be born with spina bifida.
It’s taken a little time, but I’m gradually beginning to accept the plans God has for me, our family, and our son Chance. I’m pretty sure that my heart is felt in this work…as I remember thinking two years ago that this baby boy of ours would lead me to do something more amazing, now I understand. It makes sense…and I’ve moved forward passionately knowing this work has impacted many lives. If you ask any family who has faced the diagnosis they will likely tell you of their memories where many were discouraged from continuing their pregnancy. Yes, I feel blessed that our doctors never once nudged us to give up, in fact, they helped us see the optimism. But in the last two years I’ve read stories from hundreds of mothers who were urged to consider terminating or being told their child’s life would be too challenging to care for. Most books or material that are available to be read are much like medical journals and are not very uplifting. They just don’t give as much hope as families need. I pray this campaign I’ve been working on over the last two years helps those families learning of the diagnosis for the first time find the hope I feel blessed to have found. Yes, the world needs to know that though these individuals have spina bifida and that many face challenges…they are still amazing. They are among the most determined people I’ve ever met in my life. They are resilient and their spirits still amaze me.
As I’ve shared a bit of this work over the last month I’ve begun to have more people connect with me and share their thoughts and admiration of the work I’ve been sharing. It’s uplifting to know it’s making a difference to others, however, it helps me see that there’s still a big problem. Yes, there isn’t enough awareness of spina bifida. I dream of the day that I can tell someone my son has spina bifida and not have them give me the “oh my God is he okay?” reaction. Most people I tell for the first time almost always know little to nothing about spina bifida. And I truly wished I could get someone to come up with a “cure”, but no…spina bifida is a birth defect that is incurable. It can be repaired, but there’s no real “fix” to the damage that was done when a baby’s spine wasn’t fully closed and formed correctly. Perhaps there’ll be some scientific miracle that will cure our kids someday…but until that day comes…we’re left with caring for our children who need the support. Spina bifida doesn’t just go away when the doctors close their backs after birth. Their challenges are complex and each individual is affected so differently with issues that range from mobility challenges, bowel & bladder challenges, learning delays/disabilities, most develop hydrocephalus that requires the use of a shunt, and more. Yes, hearing those things still overwhelms me. I remember being pregnant thinking about all those things that could go “wrong” but now I’m learning to appreciate every uplifting moment and we cross those spina bifida hurdles as they arise. Sometimes the challenges help us appreciate life and every single moment we have with our son a little more. There’s no reason for these children to hide the fact that they have spina bifida, in fact, through the work I’ve been doing with this campaign I’m overjoyed to see those affected by spina bifida standing up proudly and enthusiastically sharing many of the images & messaging I’ve been working on. Spina bifida may not define them, however, it is a part of who they are and there is no way to remove it from their lives. So instead of worrying, I think it’s so much more important that we embrace these families affected by spina bifida…they could use the support and the public surely may be more receptive to that if they were made a little bit more aware of spina bifida. This year the Walk-N-Roll also happens to fall on the 2 year anniversary of the day we decided “life” over giving up…so I have no doubts that it’ll be an emotional day for me. Sometimes I hate being such a reflective person, but I have no doubts that’s part of why I’ve put so much heart into this work.
Though it’s obvious that the photography work has been from my heart, I am always amazed by the number of people who are equally moved by he messaging incorporated into the campaign. I’ve had quite a few people ask me “where are you coming up with this stuff?” I’m not so sure any average designer or advertising agency could feel the same emotions or connect to the feelings families face. The thoughts shared through out the past two years campaigns were things I’ve thought about often. And often times the people I’ve connected with that are affected by spina bifida are the ones that inspire me more. This year I felt especially challenged to find a way to say a lot of the same things as last year…but differently. Yes, I’m thankful for every moment I shared with those I photographed…every single one of you inspired me. You can’t replace those moments I’ve experienced…they’re definitely life changing for me and I pray the families involved in this campaign see just how much value they’ve helped put into this work.
If you’d like to help me make a difference I’d absolutely love to see Chance’s team receive a little more support this year by either joining us at the Walk-N-Roll for spina bifida or by making a contribution online. Surprisingly we’ve only raised $1,000 thus far for his team compared to the $6,000+ we raised last year.
I hope you all enjoy this work…I’ve made sure to share it so that the little miracle who has reminded us that chances are worth taking begins and ends this year’s campaign. If you wish to share this work I encourage you to share this link, however, I will be posting images on my facebook page in the days ahead. I’d love for you all to help me share this work to help create awareness. All I ask is that you do not manipulate the photos in any way and crediting my work is always appreciated. Enjoy.
If you have a moment to leave a little feedback I’d love to hear your thoughts on this year’s campaign…something tells me you all may inspire me a little more. Once again, I hope you enjoyed the campaign.
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by Amanda Kern
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