I’ve been feeling a bit under the weather myself part of this week and haven’t taken too many photos of the kids since the day they started school, aside from the silly iPhone moments in between finding a way to rest and preparing for a new semester…surely his smile helps me share his latest update.

He’s in good spirits. We anticipate the next two weeks will be busy for us. As I begin teaching a new semester, on August 29th he’ll undergo a 24 EEG test. We’ve been told not to worry, as of right now, the hopes are to just monitor his EEG activity to see if he is having any seizures after his sleep study indicated a possible seizure activity and his aqua therapist had a similar concern about seizure like movements during his aqua therapy two weeks ago. Seizures can happen to kids with spina bifida, so we do understand it’s a possibility…but we’re going to keep praying that this study will just rule out this concern because right now we really don’t want additional concerns to worry about.

This week we also received official confirmation of his next surgery. After the last two updates I shared, I could sense all the concerns would lead to another surgery. I prayed and prayed that maybe we could avoid it – but the concerns shared in the last two updates (last two updates if you missed them: one & two) were enough for us to understand what we’d have ahead. The tests didn’t eliminate the concerns I’ve shared about his chiari malformation, they just helped us know that his symptoms weren’t so severe that we would have to have him undergo an emergency surgery. Thankfully this has given us some time to prepare. I’m not so sure we’ll ever be ready to have him undergo a surgery…but we at least are able to get the kids back into a school routine and make plans for the moments we have ahead so that we’re there for Chance and our other two kiddos. Though the surgery isn’t an emergency, it is important we don’t neglect having him undergo it in the near future because the “wait and see” approach with the symptoms and results learned of only create a risk that his chiari malformation and the syrinx could affect him in far more concerning ways.

This week we’ve learned his surgery has been scheduled for Wednesday, September 4th at 11am. It’ll be the first surgery he’s had since October 2011 and his 12th since he was born. We’ll be at the hospital much earlier that morning for preparations, tests and registration. His surgery may take a few hours. I could never say a neurosurgery is ever an easy surgery for any person to go through, but his neurosurgeon has reassured us that the issues he’s going through are easily fixable. Right now his brain is acting a lot like a cork and causing the CSF fluid not to flow properly. This is why he’s been gagging and vomiting and may also be why we’ve seen him begin to have uti’s and see more concerns with his mobility than we had before. Essentially the surgery involves removing a small part of the bone in the back of his skull with the hopes that the CSF fluid will then be able to flow a bit more effectively, and hopefully the syrinxes that have formed in his spine will also be able to begin to get smaller once there’s more room. He’s expected to be in the hospital for 3-5 days so long as recovery goes smoothly. We’ve been asked to watch him closely for the following six weeks as his head heals. So we’ll be giving him lots of love at home and away from public places until mid to late October.

I was already in the process of planning fundraisers for the upcoming Walk-n-Roll for spina bifida prior to all this news, but the moment we learned he would need surgery the folks at California pizza kitchen offered to host a fundraiser sooner than the norm so that we could give everyone the chance to not only come together to support this important cause…but so you all would have an opportunity to see our baby boy before he has his next surgery. Just two days before his next surgery, on September 2nd they will be donating 20% of all orders placed at their Waterford lakes location that are accompanied with the fundraising flyer. Our family plans to be there between 6-8pm for those of you who wish to see Chance. I’ve created an event in facebook for the fundraiser with more details for those of you interested in attending. If you’re not able to attend but still wish to show your support towards the spina bifida association of central Florida, Chance’s team is still accepting contributions online…just choose “give now” or if you plan to be at the walk there’s a link for that. All contributions help support families affected by spina bifida in central Florida.

Thank you all again for the continued prayers. We’re confident Super Chance will be sure to use his super powers to help get us all through the medical moments he has ahead.

“One day, in retrospect, the years of struggle will strike you as the most beautiful.” ~Sigmund Freud

This past week I spent a bit of time with Lindsey & Kevin as I joined them to help celebrate the 35th week of her pregnancy with their little girl Sophie. I volunteered a bit of my time alongside fellow Now I Lay Me Down to Sleep photographer, Scott Taylor, to help this sweet couple hold onto some precious memories as they await the arrival of their baby girl due next month. I learned of their story a few months ago shortly after they learned their baby girl Sophie was diagnosed with anencephaly. Most babies born with this birth defect pass away during child birth or shortly after. I am so amazed by the faith and strength of Lindsey and Kevin. There’s no doubt their family is surrounded by so many who truly love them both and their baby girl Sophie. Though it’s incredibly sad to know the loss they are expected to endure, it is so inspiring to see them find ways to continue to celebrate their baby girl’s life while she’s still growing within her mother.

Yes, time really does have a wonderful way of showing us what really matters. I suppose I never thought of the “good” that would come of that miscarriage I experienced back in 2009. Looking back it’s what has helped me find the strength to step forward and give more to those who need me most. Now I don’t question it…I know I am needed and capable. Most of the work I’ve done for families with Now I Lay Me Down to Sleep has been among some of the most moving and touching work I’ve done in my life. Very few photographers find the strength that’s needed to volunteer as a photographer for Now I Lay Me Down to Sleep. I admit it took me more than a year of considering it before I volunteered, and it was through those experiences that I knew I was not only strong enough…but that these families need photographers like me to help preserve their only memories with their precious little ones. There are so many talented photographers out there…perhaps if they knew just how needed and valued they were they might step up to help families. It’s a totally voluntary service, but I have to admit my heart feels so much richer because of this time I spend volunteering knowing how valuable this work is to the families who suffer the loss of a baby. Currently in Central Florida we only have a few photographers volunteering their time. This means some families go without this special service, especially when we learn of the loss at the last minute. Thankfully Lindsey and Kevin had the courage to contact us early and our group of Now I Lay me Down to Sleep photographers have teamed to be sure we’ll do everything possible to be there to support their sweet family in capturing moments with their baby girl next month…something I feel incredibly special to know I’ve been a part of.

Lindsey & Kevin my prayers go out to you both. I know this journey you’ve been on has not been easy, but continue to trust and maintain  your faith – you both are remarkably inspiring to me and I sure feel blessed to spend a bit of time with you both. I hope these memories help you both and all of your family and friends continue to celebrate Sophie’s life…my heart has definitely been touched because of her.

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.

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!

I learned earlier this year that the folks leading the Central Florida Blogger Conference would be supporting the Spina Bifida Association of Central Florida in a “blogging for good” initiative they were going to do at this year’s conference. Throughout the conference the attendees will be blogging and using social media with the hopes to do so in a way that supports a great cause. They’ve committed to helping out six organizations: United Arts of Central Florida, Second Harvest Food Bank of Central Florida, Greater Orlando Heart Walk, Valencia Foundation and the Spina Bifida Association of Central Florida. Through the blogging for good initiative they hope to collect donations through an online raffle where each organization has great things to give away to the winners. Yes, that means I get to give again! (more about that in a moment…)

As most of you are aware, my son Chance was born a little over a year and a half ago with spina bifida and so I didn’t hesitate to offer to help. Surely I ought to pause by “blogging for good”. I am sure the bloggers at the conference may not really know or understand what spina bifida is unless they know someone personally with it. It may help to first share a few interesting facts about spina bifida…

• Spina Bifida is a neural tube defect that happens in the first month of pregnancy when the spinal column doesn’t close completely.  It is the  most common permanently disabling birth defect in the United States ; however, the effects of Spina Bifida are different for every person.
• An average of eight (8) babies are born with Spina Bifida or a similar birth defect of the brain and spine each day.  With the right care, babies born with Spina Bifida will grow up to reach their full potential.
• There are 60 million women at risk of having a baby born with Spina Bifida.
• The odds of having a baby with spina bifida is approximately 1 in 1,500. Some say it’s like winning the lottery a family never wants to win.
•  Each day in the U.S., an average of eight families welcome a child with spina bifida into the world.
• Spina bifida is more common than muscular dystrophy, multiple sclerosis, and cystic fibrosis combined.
• About 50 percent of babies with spina bifida are selectively aborted after being diagnosed with spina bifida.
• Doctors recommend that every woman of childbearing age consume 400 micrograms of folic acid daily to help prevent neural tube defects like spina bifida up to 70 percent of the time. In spite of this, there are currently an estimated 166,000 people in the U.S. living with spina bifida.
• About 90 percent of people with spina bifida are also born with hydrocephalus. Many need a shunt inserted near the brain to drain the excess cerebrospinal fluid – and many require multiple shunt replacements during their lives.

Close to a year ago I blogged on Arnold Palmer Hospital’s blog about the experiences my family has went through since my son was born with spina bifida. I encourage you take a look back at it if you really want to know what our families often have to endure. Spina bifida has no cure…it leaves families filled with uncertainties, but also hope. Over the last two years I’ve gotten to meet hundreds of families in person and online and recognize the need for more support and awareness of spina bifida.

Perhaps you’re still a little interested in that mention of me giving away a photo session…surely sharing a few of my photos might be enough to help you all consider supporting such an important cause that truly needs could use a little help.

HOW YOU CAN HELP SUPPORT THE CAUSE
At the conference they’ll be doing a “Blogging for Good” initiative. If you participate in their “raffle” you will get a chance to win a chance at a FREE photo session with me. You have until 5pm on September 15th to enter the raffle. They will announce the winners at the conference. They are doing several giveaways for the other organizations too (you can find out more here if you wish to purchase  raffle ticket – each ticket is only $10). All proceeds donated will be donated directly to the Spina Bifida Association of Central Florida. If you are the winner of the Raffle for the Spina Bifida Association of Central Florida you’ll win the following:

• 1 photo session of 1-2 hours of custom photography with me
• 20-30 edited photos from the session
• DVD of 4?x6? resolution images of both edited and unedited photos
• (1) 11? x 14?, (2) 8? x 10?, (3) 5? x 7? prints

*By participating if you win you agree that photos may be used in my portfolio.
**You must be in the immediate Orlando area or willing to travel to Orlando if you win.
***The value of a custom photo session w/4″x 6″ resolution photos and the prints listed are $300.

Good luck to all of you blogging for good!

As many of you may be aware, I’ve spent quite a bit of time this year training and ran my first half marathon at the end of April this year in support of our baby boy Chance who has spina bifida. I haven’t written on my blog about it much since the run…life’s been so darn busy. After recovering from that run I’ve continued to train and am now training to run a marathon, yes…now you all can officially call me crazy for thinking I can really run that far. But I can, and I will. I’ve begun to plot a few races leading up to my goal, one of which is the Miracle Miles race on September 22, 2012 being held here in Orlando, Florida. The run is in support of Winnie Palmer’s Neonatal intensive care unit (NICU). They will be holding a walk, 5k and 15k race as well as a kids run. I’ve just created a team and have signed up to run the 15k race (9.3 miles). I’ve named the Team “team spina bifida”, for obvious reasons that our baby boy has spina bifida…but also having a handful of parents who have also had children with spina bifida and spent time in the NICU expressing an interest in running too…so it seems only fitting to create a team – and we welcome you all to join. I’d love to have you all join me next month…you can sign up online. If you’re not able to sign up to join us, perhaps you can make a contribution to help support this important cause.

If you need a little convincing of why I think you should join me at Miracle Miles or why you should contribute to the cause…perhaps I should take a moment to reflect on my moments in the NICU. Though Chance spent some time in the NICU, I have to admit my connection to the NICU goes far beyond that and is quite personal. After miscarrying in 2009 I stepped up to volunteer as a photographer with Now I lay me down to sleep. I’ve lost count of how many times I stepped foot into the NICU at Winnie Palmer long before our baby boy was ever born. As I sat and patiently awaited the day I’d learn I was expecting him and throughout my pregnancy and even after he was born I have volunteered to photograph little ones who due to various reasons lost their lives…each little angel has touched me personally. I’ve witnessed families who mourned the loss of their newborn taken off of life support after days or weeks of supporting their child to the families who lost a baby born too early.

The one reassurance we all have is that in Orlando Winnie Palmer’s NICU offers so many families the absolute best care to newborns who need such specialized care and the medical teams do everything they can to save and care for these tiny lives. Through volunteering with my photography I’ve also stepped up to join many families I’ve gotten to know personally who have experienced the NICU very personally like Wrenn who required a double lung transplant and spent six months of her life at Winnie Palmer’s NICU. More than two years later Wrenn is doing quite well but I know her family is forever connected to the group that helped sustain her life until it was time for that transplant her little body needed. I’ve witnessed first hand the impact the NICU has made on so many families …and I have to admit I never thought I’d be the one who would rely on their support to help our little guy through so many of those first moments that were uncertain.

So maybe a quick reflection on a few NICU moments with our boy may help encourage you all to join me in this event to support a cause that will help so many little lives. Here’s our baby boy just a day or two old resting in the NICU…

Just two days old…and the very first time he opened his eyes.

The first time our family was together…as a family of five…in the NICU.

Photographing my baby boy…in the NICU at around a week old. Deep down inside I was dreaming of being able to do his sweet newborn photos.

Ten days old in the NICU as one of the neurosurgeons checked out his back.

Ten days old we met with Lauren Rowe & Dr. Alexander in the NICU as they did a brief video of Chance that was featured on their special on the NICU for the Arnold Palmer special on Local 6.

Chance’s big sister now aspires to be a neurosurgeon someday, hoping she can someday help kids like her brother. She sure was worried about her brother back then.

Just under two weeks old Chance was taken away to have his third surgery. I had been readmitted to the hospital….thankfully our baby girl could be close by to reassure him.

Yes, the NICU has impacted us all. It’s certainly a place we’ll never forget…all the support we received helped get our baby boy stronger so he could come home.

Now if that hasn’t convinced you…perhaps I should tell you why I really feel compelled to run Miracle Miles this year. Not only because I think it’ll help the NICU or because it’d help my health…but last year when Miracle Miles was going on I was in the hospital with my baby boy going through his 9th (out of 11) surgeries he’s endured. I had heard of Miracle Miles and even considered doing it a time or two in years past…but I thought…okay, I’m really not a great runner. Yes, this was our boy last year just after surgery nine…the day they held Miracle Miles. Take a look at this little miracle, and perhaps the fact that he’s been surgery free for nearly a year is not only a blessing…but a miracle…but surely it’s a sign that this is a worthy cause for me to take part in this year…and surely I hope you all might be interested in doing the same. Super Chance would certainly love to have you join our team! Just think of all the little lives you’d be helping…

As many of you know, I’ve been training for a half-marathon that I’ll be running this weekend. Yes, it seems like I just started training yesterday…four months later…here I am about to go run 13.1 miles. Along the way I began training with the Y’s triathlon team…a group of amazing and inspiring people who helped me keep the momentum to keep going. I’m not so sure I’m crazy enough to do a triathlon (yet), but they sure have motivated me this year. I guess it’s time I do something else awesome as a way of showing my appreciation and support for those at the Y who have been behind me this year. Yes, another chance for you to win a photo session with me…you can thank this awesome team.

So here’s the details. The Blanchard Park YMCA is holding a silent auction this week to support their Youth scholarships. Every year they give away a lot of scholarships to families and children in need. They support things like memberships, sports programs, and swim lessons…helping families who typically wouldn’t have those types of opportunities without the scholarships they have available. The silent auction is running NOW through this coming Monday, April 30th. Here’s what I’ve donated to their silent auction:

One photo session (approx 1-2 hour session) that includes:

• Session includes editing of 20-30 images (color & b/w)
• DVD containing all photos (edited and unedited) from session
• (1) 16″ x 20″ canvas gallery wrap print
• (1) 11″ x 14″ print, (2) 8″ x 10″ prints, (3) 5″ x 7″ prints

Total Value of donation: $1000

** If you win this donation the photo session to take place in Orlando, Florida. Sessions outside of the immediate Orlando area are subject to additional travel expenses.

If you’d like to contribute to their fundraiser for a chance to win this donation or any of the other items they have on auction you may visit the Y in person anytime between now and Monday April 30th and purchase tickets. Tickets are $5 for 1, $20 for 5 & $40 for 12. If you are unable to make it to the Y in person  you may contact Blanchard Park YMCA’s executive director, Matt Libby, by email (mlibby@cfymca.org) and let him know how many raffle tickets you’d like to purchase and include your phone number for him to contact you directly to accept payment over the phone.

Best of luck to you all interest in helping this great cause. And thanks again to an amazing team of people who have inspired me to meeting this crazy running goal this year!

This past New Year’s eve I recall sharing with you all that I was vowing to run a half marathon this year in support of my baby boy who has spina bifida. It all began as a crazy idea that I wasn’t so sure I’d have the the strength to do but this little boy of mine has motivated me to commit to training knowing that somehow we could make even more of a difference. I have been meaning to share an update for a while now on this blog but life has been busy.

Yes, I’ve stuck to this goal I set close to three months ago…and I’m just over a month away from heading to Kentucky with our family so that I can run a half marathon for this little guy.

In the last 2 1/2 months I’ve ran over 150 miles total and cycled over 380 miles. I’ve joined the triathlon team at our local YMCA and have trained several days of the week running, spinning, swimming and strength training. As I’ve already ran and cycled hundreds of miles this year and endured my fair share of pain through this process I would do it all over again in a heartbeat. Yes, I’d gladly run hundreds more miles for my baby boy…if it meant I could do something to help create awareness. Perhaps somehow we can educate others so we no longer get the “oh my God” reactions when I tell someone he has spina bifida. Or perhaps we can get enough people to be aware of it to help in the prevention of it. Yes, I’ve tortured my body a lot this year training…but it seems so small in comparison to what I’ve seen my baby boy go through in his first year of life. I can’t change the fact that Chance has spina bifida but we can continue to make a difference as we live through the uncertainties that come with having spina bifida. Every time I find myself running…I think of my baby boy and all we’ve already been through. I think of just the mere thought of running…something so many people take for granted. It’s still too soon to know if Chance will be able to walk or run…but I sure do find myself dreaming of it more often as I’m out running so many miles. For those of you who are interested in keeping up with my crazy thoughts as I train I’ve created a separate blog for training for this run.

HELP ME SUPPORT TEAM SPINA BIFIDA & GET A CHANCE TO WIN A PHOTO SESSION
So I’ll be heading to Kentucky at the end of April with my family to run in the Kentucky Derby half marathon.  Since beginning my training the Spina Bifida Association has established a fundraising page to help support the cause. I’d like to encourage you all to make a donation and know that in doing so you’re not only somehow helping my baby boy…but the thousands of others across the country affected by spina bifida. Perhaps I can encourage you to donate by offering a chance to win a free photo session. It’s been nearly a year since I’ve done a giveaway so I figured it was about time. I’ll be giving away ONE FREE photo session to one of the amazing individuals who donates to help Team Spina Bifida.

Check out the details below if you’re interested in helping me. And even if you’re not out to win a free photo session with me, you can still donate to help out however you can. Every little bit counts. With your help we can help create awareness and offer support to those affected by spina bifida. If you can’t donate, please help spread the word.

FREE PHOTO SESSION ELIGIBILITY
Here’s what you have to do for a chance to win a FREE photo session for those who care to participate.

• Go to my fundraising page for Team Spina Bifida and Make a minimum of a $25 donation to the Spina Bifida Association.
• Email me proof of your donation to amanda [at] amandakern.com – to do this either take a screenshot of the confirmation page or proof of payment. Only email proof of your donation if you are entering to win a chance at a free photo session.
• When emailing me share with me your name, contact information and the ages and number of people of who you wish to be photographed so that I can get back in touch with you if you are chosen. If you’ve already donated to my fundraising page before this announcement and would like to participate email me so I can still include you. If I don’t receive an email from you your name will not be included in the entry.
• You may enter as many times as you like. For every $25 you donate your name will be entered into the photo session giveaway if you have emailed me your donation confirmation. (You can make a larger donation and have it counted as multiple entries…for example, a $100 donation would equate to 4 entries).
• To be eligible for the free photo session you must donate prior to April 28, 2012 at Midnight (the day I run the half marathon!). The names of those who have helped me will be collected and a winner will be chosen randomly. Entries will ONLY be accepted until Midnight on April 28th, 2012.

IF YOU’RE THE WINNER…
If you’re chosen as the winner you will have two options.

OPTION 1: FREE PHOTO SESSION

• A free photo session with me that will last 1-2 hours for you, your family, or someone you wish to give the session to.
• The session will be valid through December 31, 2012.
• You will receive all unedited and edited photos in HIGH DIGITAL RESOLUTION format. Yes, I said FREE. That means I earn NOTHING from giving.
• You will be given permission to print and share online all digital photos for personal use.

*By participating if you win you agree that photos may be used in my portfolio.
**You must be in the immediate Orlando area or willing to travel to Orlando if you win.
***The value of a custom photo session w/high resolution photos is $650.

OPTION 2: PHOTO MENTORING SESSION
I’ve received a lot of requests and inquiries in the last year or so for me to offer “mentoring” sessions. I’ve lost count of how many people have asked me “how” to I do something or if they could just spend an hour or two with me to see how my photography and/or editing approach. If you are chosen as the winner you have the option to select the mentoring session and it will be customized to meet your needs.

• A free photo mentoring session with me that will last 1-2 hours. This includes the opportunity to sit in and participate in a photo session with me.
• The session will be valid through December 31, 2012.
• The mentoring session will be customized to meet your needs and could include tips on photography, editing or a combination of both.

*By participating if you win you agree that photos may be used in my portfolio.
**You must be in the immediate Orlando area or willing to travel to Orlando if you win.
***You are suggested to have a digital slr, photoshop and lightroom. If you don’t a mentoring session can still be offered but it may make more sense if you have access and/or a little previous experience to these things.

Whether you’re able to donate or not, perhaps you can help spread the word to others you might know that might be interested in supporting the cause or in my photography. Thanks in advance for everyone’s support…you all are helping me do something pretty amazing that I once never imagined I’d do.

Just over two years ago I began volunteering as a photographer with Now I lay me down to sleep. If you’re not familiar with the organization it is one where photographers volunteer their services to families who have or are expected to lose their baby. A lot of people ask me “why” or “how” I could ever volunteer doing such sensitive photography of something many consider to be “morbid”. Trust me, I never thought I’d be the one doing infant bereavement photography…I’m convinced it was all a part of God’s plan. As I began learning photography I recall wanting to find ways to give back and initially considered it but felt it was something I wasn’t quite strong enough to do. I felt that way for a good year before I miscarried in 2009. It took that experience and a month of surreal medical experiences where I thought I might never have another child that made me think a little more about stepping up to volunteer. I’ve heard many people say they have that “moment” with God at some point in the lifetime. That miscarriage left me in the hospital for several days after going through three surgeries and I recall waking up the very last night to a dream of my mother hurting badly. I don’t recall a lot of the details but just recall waking up very worried about my mother who I hadn’t been in touch with much that month. I woke up wide awake and checked my email to find a heartfelt message from my mother letting me know she had been thinking of me and told me a bit of her own experiences miscarrying close to halfway through her pregnancy before she had me. It was something I knew had happened but it was never talked about growing up. As the tears fell, I realized it was a sign from God that I was strong enough…if I made it through as much as I did that month I miscarried then I could certainly help other families. I went ahead that same night and signed up to be considered as a volunteer. I recall thinking about my own heartache but knowing that many other families had went through so much more losing little ones much further along than I did and I felt that miscarriage finally gave me the strength to know if I could make it through that surreal month then I could make it through anything.

By December 2009 I was accepted as a volunteer photographer and was quickly thrown in the fire as a photographer. I joined when there were only a few photographers available and I was quickly needed that month for several sessions. There was never an opportunity to train or shadow other photographers…I was needed and I had no time to think about how tough it might be for me to do this type of photography because I knew I was stepping in to help them in some of the most special moments of their lives…their final moments with their little one. Exactly two years ago I was called to the hospital to photograph Ashley & Paul’s son, Caiden, who had unexpectedly lost his heartbeat at 28 weeks. Ashley had went a little longer than normal before Caiden was born so he was very fragile and still to this day it was the toughest sessions I’ve ever done for Now I lay me down to sleep. Over the last two years their family has kept in touch and I was uplifted earlier this year to hear that they were expecting a little girl at the end of this year. In mid September I met with the couple on the day they passed the 28 week mark of their pregnancy. We were all thinking of Caiden that day. They brought along this photo I had taken of Caiden’s hand grasping Paul’s two years ago.

At the end of November Caiden’s little sister, Kaydence, arrived. This past week I got to meet her for the first time. Yes, she’s an amazing little miracle.

I feel like I’ve been waiting in anticipation of this little girl nearly as much as I have one of my own…boy was she worth the wait.

At just two weeks old she had the most adorable little personality.

I wish you all could see every single little expression we got to see…perhaps this snapshot of thumbnails will help you all smile a little more.

Okay, I can’t resist it…I have to share an outtake. As we worked on posing her and keeping her head stable she totally played the perfect baby model. Yes, this little girl cracks me up.

Thankfully she didn’t take long to doze off…you know I love sleepy newborns the best.

Thanks to Erin Sharma I had an extra set of hands to help with Kaydence and as she stayed content Erin joined me in photographing her. Erin and I took some photos behind the scenes to help you all see a bit more of what a session really looks like. It takes a lot of work to get these little ones looking perfect.

We spent a lot of time admiring Kaydence. As we did we reflected on Caiden at times. Her mother and I agreed that she definitely resembles her big brother.

I think a lot of people who view newborn photography think of it as being “easy”…and many think it takes just a few minutes to take the best shots. Well, that couldn’t be further from the truth. Not only do we have to have a cooperative little one but I’ve come to learn photography of newborns has so much more to do with other things…like light…and fabric. I’ve become a little obsessed with blankets and fabric over the last four years. One thing I despise in my photos is wrinkles. I picked a fabric for Kaydence that was a little more pesky with wrinkles…I suppose some might be humored by this. I’d rather spend a few extra minutes getting the wrinkles out this way than in photoshop because photoshop really can’t perfectly fix everything.

Even after fabric is steamed I’m constantly working out the wrinkles once the baby is comfy. Some fabric is more cooperative than others…this fabric was more challenging than the baby.

Thankfully Kaydence was a little angel for us. Erin was kind enough to hold the fabric down nice and tight to help keep the fabric as wrinkle free as possible…and yes, it was a hilarious moment so I can help but share another smile from the day.

As I photographed Kaydence in Ashley’s arms I couldn’t but have a flashback of taking a similar photo of Ashley and Caiden. You definitely never forget moments like those.

There’s definitely no forgetting Caiden…but boy are we all so glad to celebrate having Kaydence here this year.

I swear this little girl makes the cutest little pouty faces…something tells me she knew we were thinking of Caiden a lot that day.

You can’t put a price on being able to take photos of Ashley & Paul with Kaydence because taking nearly the same photos with Caiden are still some of the most touching and unforgettable moments I’ve been a part of as a photographer.

Yes, Paul is a proud father…he now has his baby girl here safely in his arms. Something tells me he’s going to be holding her real close for quite sometime.

I was told Paul had Caiden’s name tattoo’d on his arms so it was a perfect opportunity for me to take another memorable photo of Kaydence.

Kaydence will grow up knowing she has a very special big brother in heaven…there’s just no forgetting that sweet little angel.

Yes, Kaydence…we still miss him…something tells me you know that.

This past weekend I invited Kaydence’s family out to do some outdoor newborn photos. It’s a tad bit more challenging to work outdoors so we had a goal to get one perfect shot of Kaydence. Erin joined me again…she helped me test the light where we would shoot the photos of Kaydence.

The plans were to photograph Kaydence on a large tree that had been knocked down. Safety is the absolute most important thing to me so as we positioned her and made sure she was cozy everyone had hands on her helping her feel a little more comforted and safe.

Once we got her into position and we knew she wasn’t too squirmy we began taking tons of photos.

And here she is…sunbathing in the awesome December Florida sun.

Ashley & Paul best wishes to your family. Kaydence truly is a blessing just like her big brother. Something tells me he’s up there smiling as we all watch his little sister grow. Happy birthday Caiden…you’ll never be forgotten.

Today I met with Mary & Mason for the first time since they’ve been home from the NICU. Mason who was also born with spina bifida remained in the NICU for a little over a week and is doing remarkable thus far. Here he is just over two weeks old.

We were so excited to see his eyes open in the NICU that today he decided he wanted to sit and hang out wide awake for a bit. I of course took that as a sign that he wanted me to make sure I captured his adorable eyes. I hear everyone wants to see this little guy in color…so here he is…blondish brown hair and I believe those are blue eyes right now.

I suppose since having Chance nearly six months ago I am beginning to realize just how important it is to help give other mothers that “hope” I had hoped so much for when I was pregnant. When I was pregnant all I read were the medical journals and web sites and a few blogs of other families. It felt like I kept hearing all the most awful things that could happen…and little focus was placed on the pure beauty of these little ones who are truly miracles. I suppose now it’s time to push on with my vision…to help others somehow see what I struggled so hard to find that month after I found out Chance had spina bifida and for the remainder of the time I was pregnant with him. Just look at Mason’s sweet face…curled up just like the approximately 70 other newborns I’ve photographed…if I didn’t tell you…you’d never know he had spina bifida. Even with something that sounds so awful…yes, spina bifida…there’s something quite special in these little souls. Yes, Mason…you are precious and I sure loved how sweet you were to me today.

Due to his spina bifida, Mason was born with two club feet where his feet turn inward. Once his back is completely healed they’ll put casts on his little feet to help correct the problem, but for now they remain curled up. It was quite breathtaking today to photograph his feet. I knew they’d be something special before I took the photos…but looking back now…I’m fairly certain these are some of my absolute favorite newborn feet photos ever. I suppose the only thing more uplifting than these photos was hearing Mary tell me Mason began moving his legs yesterday…and I got to see it today for myself. Yes, it’s a miracle…and we’ll all keep praying that these feet will someday take steps all on their own. For now hopefully you will also enjoy my admiration of his little feet.

Mason was still somewhat curly…but not quite the same as other newborns. I worked with positioning him today. He definitely preferred to stay wrapped. Instead of curling his legs inward, he curled them upward and kept his legs pretty straight. His little feet peek through his wrap so preciously here.

I’d love to take all the credit for taking such sweet photos of Mason but it definitely wouldn’t have been possible with out Mary helping so much. As I worked to position him she often would sing a sweet lullaby in spanish to him….it was absolutely beautiful…the sort of stuff you never forget. It definitely did the trick to help soothe her little man to sleep.

Many prayers to our new friend Mason…we’ll continue praying for his back to heal quickly and that he escapes the need for a shunt.