Ellie

Thursday, October 25, 2012

It’s hard to believe it’s been nearly two years since I photographed my little friend Cleary as a newborn. Cleary’s baby sister Ellie was born recently and I went to visit them to take her newborn photos and a few pictures with their family. I’ve been incredibly busy so I’m finally getting an opportunity to share these on my blog. I have to admit that I’m still in awe with this little girl…and it definitely was a memorable moment for me. Ellie is the 100th baby I’ve photographed since beginning on this journey doing newborn photography. Cleary is incredibly cute and smart and absolutely adores his baby sister. Ismael & Lauren I hope you enjoy the photos. Best wishes to you all…Ellie is one lucky baby girl to have such an awesome family!

Photography

by Amanda Kern

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2012 Spina Bifida awareness campaign

Tuesday, October 23, 2012

“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.

Photography, spina bifida, volunteer

by Amanda Kern

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Yadiel

Saturday, October 20, 2012

“You never know how strong you are until being strong is the only choice you have.” ~anonymous

Times have been busy and I’m anxious to share a lot of new work in the week ahead. With it being spina bifida awareness month, I prolonged sharing my favorite photos from Yadiel’s session so that you all would get to see them in a time that many people are still learning what spina bifida is for the first time. Ailemarg & Josh are a young couple who were recently blessed with the arrival of their son Yadiel. I got to meet with them when he was just over two weeks old. Just like virtually all babies with spina bifida, he was required to stay a little longer in the NICU as they had to repair his back to be closed properly. If I remember correctly, he was 18 days old. I could sense their nervousness the day we all met…but boy was that overpowered by the love I felt they shared with their precious little boy. What beautiful and memorable moments we captured that day.

Josh was such a fun and helpful father. We planned to take a few photos of him with Yadiel, but his baby boy had other plans. He was a little fussier than I would have liked for a good portion of our time together, but those moments looking back are still so unforgettable now.

With a little patience we managed to capture a few of the moments I envisioned of Josh & Yadiel.

Including this photo, one of my all time favorite father & baby photos I’ve taken, and definitely one of the highlights of this year’s spina bifida awareness campaign I’ve been working on.

Yadiel really didn’t have much interest in sleeping like a newborn, but still incredibly precious. Due to his spina bifida Yadiel was born with two club feet that will be corrected in the months ahead.

I know most parents who find out their babies will be born with spina bifida pray they don’t need to worry about the issues that may arise with club feet which usually includes casting and sometimes surgeries. It’s was hard for me not to take the time to admire his little feet, because despite the imperfection, they still beautiful just like all other baby feet. Years from now I pray the photos of his itty bitty feet help remind his family of how far he’ll have come from the moments of when he was born with club feet.

Towards the end of our time together Yadiel was quite content and alert. It’s been over a month since I’ve seen Yaidel and I admit I’ve prayed for him a little more in the time since I took his photos. His family’s informed me he’s required a shunt shortly after the time I took his photos, something I’ve learned happens with 80-90% of babies with spina bifida.

Ailemarg & Josh thanks for allowing me to capture a few moments with your family. Never forget that you are incredibly blessed, despite the challenges that spina bifida may bring to your lives. You have a community of families here in Central Florida who are in love with your baby boy and your family. Best wishes to your family!

Photography, spina bifida, volunteer

by Amanda Kern

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Look who’s five!

Friday, October 12, 2012

It’s hard to believe it’s been five years since our little guy Jaylen was born. I’ve blinked and now he’s such a big boy…so proud to be five. He’s such a loving, charming, and fun little kid these days. I visited him just before it was time to pick him up from pre-k today and brought the kids some cookies so they could celebrate his special day. I’m still in shock that he’s in school…I swear it was just yesterday that he was born and I was holding him in my arms.

Jaylen who was once the baby has transitioned well into the middle child of our family. He’s such a care free little guy who loves his brother and sister so much.

We started Jaylen in t-ball this fall with the little league. He’s becoming quite the little ball player. I can’t help love hearing when he tells us how happy it makes him that he now gets to play ball. He’s thanked us several times for signing him up to play telling us how much fun it is for him.

Jaylen is often one of the toughest to photograph. In the last few years he’s grown into a shy little fellow who prefers not to have too much attention placed upon him. Often times that makes it hard for me to capture memorable moments with him where he’s caught in those moments of happiness that we witness often. In the last month or so he’s really taken to my camera and has either cooperated for a few quick shots or has asked for me to take his photo.

About two weeks ago I was out taking photos and he asked me to take his photo…he said “…because I look cute!” Yes, boy…you are incredibly adorable…I’ve been waiting for the day that you’ve wanted me to take your pictures.

Yes, my baby…has begun to grow a little more. The little guy who once was the baby I dreamed of for years…the same one that was the one I got to baby a little longer after miscarrying three years ago…and the little guy who I feared would always want to be babied when we learned Chance would be born. Thankfully he’s transitioned so well and as time passes he continues to amaze me with his sweet spirit and caring heart.

Jaylen is our shy child. He’s quite bashful but sometimes that’s what I absolutely adore about him. I use to worry because he talked very little the last few years and I’ve come to realize that he’s smart enough to only share his thoughts when he needs to. Surely if they are important enough he will say them. In the last year he’s become such a chatter box, still shy, but he’s been known to  talk on and on and on when he gets excited about things.

I still remember when he was first born all the nurses in the nicu who cared for him in the first few hours after he was born said he was such a ladies man. I guess he knew how to make them all smile and gave them his pouty lip when he wanted more attention. Since he’s begun preschool he’s come home claiming he has a few girlfriends. Yes, if you saw him around the little preschoolers, they all adore him…how can you blame them.

Every day one or two of his little friends run up to him to give him a hug and say hello or goodbye for the day…and this is the smile I see, the one I love. My shy guy all smiles.:)

Okay, kid…it’s official…you’re five. I’ve decided not to bust out the kleenex this year thinking about how fast you’re growing…instead I’m overjoyed just seeing what an amazing little kid you’ve become.

Yes, Jaylen Nathaniel…you truly are a gift from God…you’ve blessed our family with so many memorable moments and we love you to pieces. Happy birthday son…now try not to rush to turning into a teenager like you were counting to today, okay?! We wish we could keep you five forever…because we just love this little adorable boy that you’ve become.

Jaylen

by Amanda Kern

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Remembering D-day

Friday, September 28, 2012

“She not only saw a light at the end of the tunnel, she became that light for others.” ~ kobi yamada

If you mention “D-day” to most the thoughts of troops storming the beaches of Normandy might enter their minds. But if you ask most parents of a child with spina bifida they likely will never forget a different battle… “D-day”…the day their child was diagnosed with spina bifida. For most the memories of the diagnosis day likely are filled with those cold and dark memories where moments of fear created worry about how much might be wrong with their baby. I know that’s how I felt two years ago today. I was scared to know how much my son Chance would have to endure and how many challenges spina bifida would bring him and our family. I was so scared I was ready to give up and the fact that he would be born with spina bifida didn’t make any sense what-so-ever. I seriously thought God had it out for me and was just throwing every possible heartbreaking challenge at me in an attempt to break me down completely. Two years later I realize really his intent was to lift me, my family and our baby boy up higher but that we’d have a few challenges to endure along the way that would help strengthen us.

I didn’t choose for my son to have spina bifida. Surely if I had a choice I’d wish that it be eliminated from our lives completely. Over the last two years I’ve spent so much time just trying to wrap my head around trying to understand why he has spina bifida and wishing for him to be spared all of the challenges that are known to arise with spina bifida. We’ve definitely not travelled the easiest path in these two years since we’ve known he’d be born with spina bifida. But as time has passed I’ve begun to understand a little more God’s intent. Just look at this little boy…despite the imperfections he was born with…he’s absolutely perfect.

Two years ago I was worried about his mobility. All the things I read in those first few weeks had me fearing the worst possible scenario. Two years ago I was worried if he’d even be able to stand. Just in the last few weeks he’s begun to pull up to things and if he’s holding onto something or leaning against something he can now stand. Only for a brief time, but this is one huge step for our little boy. It gives us hope that someday he will walk. Sometimes I wonder if he’s just a bit weaker due to his spina bifida or if he’s just stubborn…but I’m convinced it’s a combination of the two. This week when I took him to the ball field I decided to work with him on standing in hopes that this year for his spina bifida awareness photo that he’d be standing. Thanks to him saying “hello” as someone’s phone rang he completely stopped resisting me and stood so darn well for several minutes.

We tried a couple times and he just amazed me with how well he did. I sure hate spina bifida but because he has spina bifida I have so much more appreciation for every little milestone he meets.

Surely spina bifida has changed our lives. At times I fear perhaps I’ve blogged a few too many of my thoughts, but days like today make me appreciate being able to reflect. Yes, two years ago I blogged to tell the world “my baby has spina bifida” and last year I reflected “a year later” …for some reason reflecting helps me appreciate the journey a little more. Apparently blogging has helped more than just me…that crazy idea of sharing the news 2 years ago has made it’s way around the world and likely one of the top things you’ll find in google if you trying to learn more about spina bifida. Part of me still doesn’t understand but as time passes I have begun to see the light and recognize that Chance having spina bifida has helped me recognize more of God’s intent for me and for our family. Two years ago I didn’t quite realize how many lives this little boy of mine would touch. In two years he’s helped me and our local spina bifida community bring together our local community to support those affected by spina bifida. And through my blog every day new mothers learning of their own diagnosis are continually searching online for support and somehow learning of our baby boy’s story. Yes, Chance…you were brought into this world to help bring hope to others. I don’t know if you realize it yet…but you’ve truly touched the hearts of so many. There’s no denying that you are incredibly special.

My son has given me hope and appreciation for life and I now do my best to make the most of every moment we have with him. His life is precious. We feel blessed that his medical challenges have settled down. We now understand the value of his life and we realize that spina bifida isn’t what defines him…it’s just a little part of who he is.

The fact that he has spina bifida just makes all the things he does that much more amazing to us. I pray for the day that we can eliminate the stigma associated with spina bifida. You know…the day I tell someone new that my son has spina bifida and they don’t give me the “oh my God is he okay?” type of reaction. I pray for the day that all the expecting mothers learning that their child has spina bifida are no longer lead to believe that spina bifida is the worst thing in the world or a reason to give up on their child. Still in 2012 I’m in shock with the resources that still seem so scary and daunting. I know more can be done. I know this little man of mine was brought here because more hope is needed to improve the world’s perception of spina bifida. It’s not the worst thing in the world. In fact, some of the most beautiful and amazing people I’ve ever met have spina bifida.

Yes, baby boy…I pray that somehow sharing your story has helped give a few people the hope they needed.

After working with Chance earlier in the week at the ballfield trying to get him to stand I decided we’d take him out to do a few more photos that hopefully I might get to use in the spina bifida awareness campaign. It really took a lot of trickery and playful moments…thanks to our baby girl I have a few photos to share of the moments that may make you all smile.

It took several attempts and Hope and I took turns…little man was being stubborn and made us work for a few photos.

But he finally gave in, knowing that he’s incredibly cute.

I knew two years ago that I loved him…but I didn’t realize I would love him this much. I hate that he has spina bifida…but I know now that it’s not the end of the world…in fact, my world is that much more amazing because of this little guy.

Before we knew it…he was standing. Yes, baby boy…those legs work. They may need a little more time to get stronger but we will help you get there. The fact that you are standing, even just leaning against a wall is amazing and still moves me. Two years ago I feared you might not ever be able to do this.

But look at you. We couldn’t be more proud. We once feared you might never stand on your own…I have no doubts you’ll continue soar above our expectations…just like the “Super Chance” that you are.

Yes, it’s diagnosis day…and I remember, much like a birthday…the day my son was diagnosed with spina bifida. It’s an emotional time of year for me as the memories rush back and at times hit me like a sledgehammer ….really wishing still that my son didn’t have spina bifida. Two years ago I was scared to death and feared I wasn’t strong enough to endure all these challenges. I was more worried about what was wrong rather than what might go right…and how my son would overcome some of the most trying moments. Perhaps it’s crazy that I take so much time reflecting, but for me it’s important to honor this day…because though at times I wished spina bifida away from our lives…I also find it to be a unique blessing that has brought just as many uplifting moments to our lives.

To all the new mothers who may happen to stumble upon my blog online after receiving the diagnosis, I will tell you this journey of having a child with spina bifida…it’s not easy. But it’s worth it. You are strong enough to raise a child with spina bifida. Your child will amaze you. And in time you too will learn that things aren’t quite as scary as they once were the day your baby was diagnosed.

I’m currently working on more photography for the spina bifida awareness campaign again this year and can’t wait to share it all soon. In the meantime, I hope this little update on “d-day” makes you all smile.

To our baby boy…Super Chance…you are loved.  Thank you for helping make our lives more amazing. You are amazing.

spina bifida

by Amanda Kern

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