Nearly six years ago we learned our son would be born with spina bifida. One of our biggest fears had come true – we would have a child who was considered by society as “disabled”. So many fears we once had have come true. But Chance continues to remind us – his disability won’t hold him back.

Although he’s faced so many challenges since birth – we are beginning to sense we have just begun the real struggle to help our son. Those medical challenges he’s faced, the surgeries, the therapies and appointments – we look back now and realize they were nothing compared to the struggle we now face with the public school system. And to think – we have just begun this journey. Don’t be fooled by this ideology that we’re superhero parents – raising a child with special needs is HARD. It’s so much harder than we realized.

As Mr. Rogers once said, “Part of the problem with the word ‘disabilities’ is that it immediately suggests an inability to see or hear or walk or do other things that many of us take for granted. But what of people who can’t feel? Or talk about their feelings? Or manage their feelings in constructive ways? What of people who aren’t able to form close and strong relationships? And people who cannot find fulfillment in their lives, or those who have lost hope, who live in disappointment and bitterness and find in life no joy, no love? These, it seems to me, are the real disabilities. ”

This quote has reminded me that the problem isn’t that our son is “disabled”. Sure, he may need help walking, he may need a wheelchair, he may require additional medical care, including being catheterized – but the reality is the real disability remains in the school system.

Today we attended Chance’s IEP meeting before he is scheduled to start Kindergarten this August. We were hopeful and took every measure to clearly outline our requests and even have had every pediatric urologist in the central Florida area who cares for spina bifida patients sign a letter approving our request for a non-medical person to be trained to do his care. Our son’s medical team agrees with our request. Regardless of if we have staff in the school willing to help, the district told us today they are unable to approve our request. Instead, they’d prefer to have him attend school at the center school for medically disabled children. Although they do have a mainstream class that he’d be able to attend – he would be asked to go to a school where many other significantly disabled children are sent.

When we discussed the topic of his cathing support needs, the school refused to consider our request – it was clear their minds were made up before the meeting even began. And as they began to quote district policies and their own stand point – over and over I heard them refer to the “safety” and their “protocols” – not what was in the best interest of our child…but what was in their best interest. Never once did they share these policies with us – and they feel they can supersede the state law to be “safer”. We haven’t even begun school and the school system is more worried about a liability than how much they can support a child who could thrive in the school all of our children have attended. Taking our son away from our home school and from his brother would only harm him socially – and asking them both to relocate to the school the school wishes will affect our entire family negatively.

Most days Chance asks us “Do I get to go to Riverdale now?” often followed by “are you still fighting for me?” To the school system they don’t think it’s a big deal to just send a child to any school – but for years our son and our family has looked forward to the day he would start school at Riverdale. We never once thought of another option – we honestly didn’t think we’d have to fight this hard. This is one of the hardest lessons we may need to teach our son…and just the beginning…that not everyone will perceive his “disability” the same as we do…and that we are going to have to fight sometimes – not for what is easiest – but for what is right.

Our son hasn’t even begun school and we are in the process of filing a complaint to request a due process hearing. He hasn’t even started school – and we have to go through these measures. There is something so wrong with this. Families raising a child with special needs go through enough – we shouldn’t have to fight this hard just to enroll our child in school. We are working with a school system where many educators within their school system have said they are the “worst” at meeting a child’s special needs – a school system that isn’t receptive to change or willing to adapt to meet a child’s needs. Please don’t tell me about “policies” when you can’t even provide them at a meeting – besides, as an educator I’ve learned there are rules to be followed – and rules worth breaking for the sake of a better outcome. You can’t say it’s not possible – I’ve learned of countless families who have received the support in other counties. It just makes no sense at all why one of the largest counties in the state of Florida isn’t receptive to meeting a child’s needs – not the school’s needs – but a child’s needs. Serve a child in their home school when parents request it – it should not be this hard. Cathing is not that hard…and please, don’t feel bad for us or our son because he requires cathing – feel sorry for the school system who isn’t willing to adapt to a child’s needs…they are the ones with the real disability.

Five and a half years ago we wanted to give up so badly when we learned about Chance’s spina bifida…this journey seemed like it would be too hard. It is hard. But it’s also rewarding and so meaningful. We know we are on this journey for a reason. Five + years ago we didn’t think we were capable of raising a “disabled” child. And at the time we were frightened of the thoughts of cathing. We’ve been battling the school system for nearly a year and a half and here we are frustrated feeling once again like giving up might be “easier” – to just do what they wish. But our job isn’t to make life easier for the public school system – the day we promised not to give up on our son’s life – we promised we would fight for the rest of our lives…for everything our son needs.

We will fight – for Chance…and for every single child who may someday need support cathing in school. A change is needed – and laws need to be improved so that schools are held accountable. Instead of worrying about their own liability they should be worrying about what is in our son’s best interest. Someday I am hopeful the school system realizes as Chance tells us – cathing is “no big deal”. I vow to continue to remind the school system just how “disabled” they are every time they make our lives harder because of our son’s disability.

So here’s the deal….it’s GIVING TUESDAY, right…and I can’t let the day pass me by without “giving” – but an even more amazing thing would be encouraging others to help me give. I’m giving away an opportunity to win a photo session +prints with me or a photo mentoring session. Bear with me as I share my heart as to ‘why’ I’d like you to give first.

If you’ve been following my photography you likely already know – just over 5 years ago we learned my son Chance would be born with the birth defect spina bifida. The diagnosis is a pretty scary experience…hearing he’d be born with the most ‘severe’ type of the birth defect didn’t help. It was also tough hearing I shouldn’t “google” the topic – and after receiving information that was 20-30 years old I admit…I couldn’t help but search online for information and support. I was more terrified the more I learned from the resources I found.

Looking back over the past five years its been an observation that resources mostly tell families what is “wrong” with a child with spina bifida. While resources may give a medical perspective of the birth defect, they don’t really share what life with spina bifida is really like.  There’s little hope or optimism shared after a diagnosis – but from the moment our son was born that’s all we’ve experienced. Chance has surely faced a great deal of adversity in his life – but he’s proven his life can be amazing and he’s one of the coolest kids on the planet! I still think back to five years ago and remember it like it was yesterday – like so many other families – we were so frightened and we seriously considered all of our options, including termination. Now that he’s here it’s hard to believe we nearly gave up on our own child’s life. Why? Because of the challenges we were scared we could care for? Because we didn’t want him to suffer? Because we didn’t know if we or our family were strong enough to care for a child with significant needs? Well we are…and this kid has proven how remarkably amazing it can be to live through the uncertainty of living with spina bifida.

The past five years of my life I’ve devoted a considerable amount of time photographing individuals living with spina bifida. I’ve not only lived with the challenges and triumphs raising our son, but I’ve been honored with the experience of meeting so many other families who are living this journey. I’ve seen the struggles and witnessed the happiness that can be experienced. My heart has ached for the many families I’ve since met who have also received the diagnosis – knowing they’ve faced the same tough decisions and fears for their child’s life.

Over the past year I’ve teamed up with a group of professional photographers who have also begun to volunteer their time to photograph families affected by spina bifida. Every photographer has a direct connection to spina bifida just like me. We’ve had several other volunteers also join our group who have a passion for helping the spina bifida community. After doing extensive research we realize so many of the project ideas we have to create awareness of spina bifida and to help improve resources would require funding. In May 2016 we received 501(c)3 status as a non-profit with the hopes it will help us ensure we are able to seek the support needed to make our vision a reality. Just over a year ago we began a facebook page and are currently working on branding, our online presence and other resources such as a resource for newly diagnosed families – all of which require support.

In the past year our page has seen nearly 8k fans in more than 45 different countries. Just this past month we’ve received communication from families in the U.S.,  various countries in Europe, Iraq and Australia – newly diagnosed families or new parents who all sought support and were praying to find hope. It’s 2015 and sadly so many newly diagnosed families receive little to no information about spina bifida, receive outdated information, or are encouraged to give up on their child’s life. It’s 2015 and its sad to know that prenatal resources primarly share only what is ‘wrong’ with a person’s life who is born with spina bifida. These kids are so much more than their diagnosis and families deserve to hear just how much potential their lives hold. Spina bifida is the most common permanently disabling birth defect yet so many around the world still know very little about it. It’s time we help improve the world’s perception of spina bifida – the team of volunteers I have worked closely with this past year truly believes it is possible – we hope to be the change we wish to see in the world.

So its time to share my giving opportunity. As many of you know, our son Chance has a surgery coming up – so we’ll end this opportunity on December 6th, 2015 so that we can announce a winner on December 7th before he undergoes surgery the following day. Here’s your opportunity to either win a photo session + prints or a photo mentoring session…

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 the fundraising page for Redefining Spina Bifida (https://fundly.com/redefining-spina-bifida) and make a minimum of a $10 donation to Redefining Spina Bifida.
• After you’ve donated if you’d like to earn additional entries into this contest you can share on social media (only if you’ve made a donation too) – be sure to email me to let me know you’ve shared the fundraiser on social media.
• Email me to let me know you’ve donated and shared the page – email me here: amanda [at] amandakern.com When emailing me share with me your donation amount, 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 I don’t receive an email from you your name will not be included in the entry. If you donated prior to this announcement I will still honor your donation as an entry – just send me an email.
• You may enter as many times as you like. For every $10 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 10 entries).
• To be eligible for the free photo session you must donate prior to Dec 6, 2015 at Midnight. 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 Dec 6th, 2015. A Winner will be announced on December 7th, 2015.

IF YOU’RE THE WINNER…If you’re chosen as the winner you will have two options.
OPTION 1: FREE PHOTO SESSION + PRINTS!

•  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 between January 1, 2016 through December 31st, 2016.
• You will receive all edited photos in HIGH DIGITAL RESOLUTION format. Yes, I said FREE. That means I earn NOTHING by giving.
• Your session will also include one canvas print 18″x24″ as well as a print package including (2) 8″x10″ prints, (6) 5″x7″ prints, (10) 4″x6″ prints, and (2) set of 8 wallet prints.
• 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 and prints is $1000.

OPTION 2: PHOTO MENTORING SESSION
I’ve received a lot of requests and inquiries 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 January 1, 2016 through December 31st, 2016.
• 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 who might be interested in my photography. Thanks in advance for everyone’s support. Together I know we can improve the world’s perception of spina bifida.

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.

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.

My son Chance was born a little over four years ago with spina bifida, so forgive me if I’m passionate about advocating for those who are affected by this birth defect – but this little guy has changed our lives. I took folic acid for years before he was born – but he was still born with the birth defect.

For those who aren’t aware of what spina bifida is – it is a birth defect that a person is born with. During the first month of pregnancy Chance’s spine never fully formed. He was born with an opening in his back that was about the size of a silver dollar. This “defect” required surgery when he was just a few hours old. Spina bifida has no cure and often requires complex care in various areas.

I value the role of “prevention” and think it’s so important. Surely you know about folic acid – its the supplement we pray will prevent birth defects like spina bifida. It’s perceived to be the miracle worker in healthy foods and vitamin supplements – and if taken research has proven it CAN reduce the chances of having a child with a birth defect like spina bifida. Eat your foods rich in folate and take your vitamin with 400mg of folic acid – that’s what women should do before and during pregnancy. I did take folic acid and I have a child with spina bifida.

I did everything the doctors said to do – and still have a child with spina bifida – something we tried so hard to prevent. It’s proof that folic acid isn’t the sole way to prevent a child from having spina bifida. But surely every time the topic of spina bifida comes up – many of us parents are questioned and asked why we didn’t take our folic acid. In fact, during my pregnancy one of my own colleagues who is well educated in nutrition asked this very question, “Don’t you know folic acid can prevent spina bifida?” It goes to show that most of society is lead to believe that not taking folic acid is the cause of spina bifida. Well, I have some news for you all…thousands of mothers took their folic acid just like they were told to do and they have children with spina bifida.

More folic acid definitely couldn’t have made my child a more adorable child…aren’t kids with spina bifida some of the cutest on the planet? Our son shared his sweet personality at a very early age.

In Dr. Chilton’s article he notes that another doctor, Scott Obenshain, has shared that fortifying foods with folic acid has decreased the occurrence of neural tube defects like spina bifida – which is very true. He mentions over 5 million children have been born with spina bifida. Currently there are approximately 166,000 individuals in the U.S. living with spina bifida and about 500,000 living with the birth defect worldwide. The article misleads readers to believe that spina bifida is 100% preventable. Although Dr. Chilton does reference that folic acid can help reduce the occurrence of spina bifida by 70% it is disappointing to hear a medical professional refer to spina bifida and disability saying “How much better, though, to not have to head off to college in a wheelchair, to be one of the 22,000 children saved by folate every year around the world from a life hampered by disability!” Folic acid surely can reduce the occurrence of spina bifida by approximately 70%, but it is not a 100% method of prevention of the birth defect. So many causes of spina bifida are still not known and for most women like me. We will never know “why” our child was born with spina bifida. I’ve come to trust that I could not have done more to prevent our son’s birth defect. In fact, raising a child with spina bifida has taught me that some things in life, regardless of how challenging they may be, cannot always be prevented – and what initially is perceived to be a huge burden often proves to be a life changing blessing.

The image below is of our son Chance when he was just one week old after he went through his 3rd surgery to have his 1st shunt placed. Now before you “awe poor baby” our boy – lets appreciate the strength of these kids born with spina bifida. They are resilient and bounce back from some of the toughest challenges in life. When most other people would want to give up – they have learned to thrive amidst the most challenging of circumstances.

Yes, Dr. Chilton, as you say it’s amazing what the “tiniest dab of an important substance can do!” I’m so thankful folic acid has been able to reduce the occurrence of spina bifida by 70% but have you ever given any thought to the 30%? You know the 30% of us who DID take folic acid daily for months or years prior to conceiving. My diet was filled with foods containing folate yet I still had a child with spina bifida. I appreciate you helping educate your community on the value of folic acid supplements, however, for thousands of families folic acid supplements were NOT enough to prevent spina bifida. By no means do I discourage the use of folic acid – but perhaps medical researchers have a lot more work to do to better understand the causes of spina bifida because folic acid supplements alone are not the only solution to reducing the occurrence of spina bifida. So many families affected by spina bifida have spent time wondering “why” and “if” they could have done more to prevent their child’s birth defect. How about doctors do more research into if women conceiving are able to process common folic acid foods and supplements properly? Or perhaps we also place focus on a man’s nutrition and folic acid intake – because surely they have just as much of a role in the creation of their child. Or perhaps there needs to be more research into environmental conditions – there are areas in the United States alone that have a higher occurrence of spina bifida which is evidence that much more than folic acid is to blame for children being born with spina bifida. Folate may help some, but I pray the medical community and those trying to prevent spina bifida stop trying to lead the world to believe that folic acid is the sole way to prevent spina bifida. This article misleads readers to believe folic acid is the magic solution to preventing spina bifida.

My bigger concern is not Dr. Chilton’s mention of the value of folate in a women’s nutrition before and during pregnancy but the references to spina bifida and disability are so disheartening to read. This recent article written by him is anything but heartwarming for a family affected by a disability to read. Yes, I admit – if I had the choice – my son would not have been born with spina bifida. In his four years of life he’s been through so much – 13 surgeries, 6+ weeks hospitalized, and countless medical tests, appointments, and therapies. In fact, his cost of care in four years has far exceeded the estimated lifetime cost to raise a child with spina bifida. The CDC notes that the estimated lifetime cost to care for a child with spina bifida is $706,000 – the birth defect can certainly be costly. I do believe families should do as much as possible to prevent spina bifida because the birth defect typically does lead to a lifetime of medical needs, but please don’t consider individuals born with spina bifida to be confined by their disability or that they will feel “hampered” by their disability. In fact, many born with spina bifida will tell you that the life they lead filled with medical challenges are all they have known and most do not want you feeling sorry for them. Besides, whether or not an individual attends college in a wheelchair – they can still lead an amazing life and I suspect most aren’t sitting there wondering “did my mom take folic acid?” I’ve learned of many people living with this birth defect are leading full lives – attending college and performing jobs such as educators, writers and doctors – certainly proof that their lives are not “hampered” by spina bifida.

Chance may have experienced a significant amount of medical challenges in his lifetime  but I can sense these challenges are strengthening him.

Our son Chance has proved he’s capable of amazing things. If you sit and feel sorry for the medical moments he’s faced you’ll miss out on seeing the great things he has already achieved. I’m pretty sure he can out swim most kids his age!

And rather than fearing if a child may be “hampered” by a life in a wheelchair – I pray doctors sharing information on spina bifida don’t lead the world to believe that all individuals living with this birth defect will be confined to a wheelchair. In fact, many do walk – they may need the support of braces and assistive devices but nearly 70% of individuals with spina bifida do walk with or without support! Even if they require a wheelchair for mobility – I promise it’s not the end of the world. Our son also uses a wheelchair for longer distances and if he ends up going to college using his chair – I surely won’t make him feel like he’s living a worse life because of it.

In so many ways Chance is just like any other kid his age – he loves to color with his brother!

Just like every other kid he has a blast playing at the park.

And he’s an active little guy always on he move – having fun through it all.

He may require a little help at times but overall he’s so much like any other child his age.

In fact, put him out in public and we’re fairly certain he’ll find his way around on his own. In fact he prefers to move around independently. There’s no reason to feel sorry for him because he was born with a birth defect. We tried our best to prevent it  – but we’ve realized he was meant to be in our lives living his life with this birth defect and now we will do all we can do support his needs.

There’s one thing missing from Dr. Chilton’s article – and that’s the ounce of hope needed by families affected by spina bifida – for those families who did take folic acid who have or will have a child with spina bifida. Dr. Chilton you are correct, spina bifida is the most common permanently disabling birth defect with complex challenges that often leads to a lifetime of care and expenses are often 13 times greater than an average child’s medical care. We were reminded of that this past month as our little guy underwent his 13th surgery for a shunt revision.

Dr. Chilton you forgot to mention that individuals born with spina bifida are among the bravest, strongest, and most kind hearted individuals.

They are resilient and no matter how many medical complications they may endure in their life…they are loved.

This birth defect our son was born with – it doesn’t prevent us from loving him. On the contrary spina bifida has taught us just how powerful our love for him is. It’s also taught us that what we once perceived as an “imperfection” has since helped us see that Chance is perfectly made.

I pray the next time a doctor has an opportunity to educate a community or their patients on spina bifida that they find a way to bring more hope to those who may someday be affected by this birth defect. Prevention is important – but lets pause to think about how these families affected by spina bifida may be feeling. So many of us did all we could to prevent the birth defect and have a child with spina bifida. Our world has created enough stigma against spina bifida and disability. We need more doctors who care to also bring hope and optimism to those who may be affected by spina bifida. Rather than trying to eradicate spina bifida from the planet I wished the world would spend more time finding ways to support those families whose lives are forever changed by spina bifida.

Now take a look at the photos below – they are just a fraction of the individuals born with spina bifida that I’ve photographed in the past four years. We can sit here and discuss prevention and folic acid – but the reality is that 30% of the population has taken folic acid and they still have children with spina bifida. And guess what? To our community of families affected by spina bifida a more important thing to worry about than folic acid is promoting a community that will support the families affected by this birth defect.

If you’d like to see more hopeful images and reflections of spina bifida visit the Redefining Spina Bifida facebook page.

A few days ago we found ourselves remembering just how much uncertainty spina bifida can bring into our lives. Over the past few months we had noticed Chance beginning to gradually show symptoms that were concerning. He was having very brief headaches that would last a very brief time. He began to complain of back pain for very brief periods of time. And at times he would get nauseous. Sometimes spina bifida truly frustrates us because we find ourselves trying to guess and figure out which of the areas could be impacting Chance. We moved up all of his tests, and even had more tests ordered, for earlier this month. We had concerns that it could be any number of things that could cause these syptoms…his shunt, the syrinxes in his spine, tethered cord, a pseudo cyst in his stomach, constipation, or seizures. At the beginning of May Chance went through sedated MRI’s, ultrasounds, an x-ray, and a 24 hour EEG. Most of his tests were inconclusive – his MRI showed a very slight increase in his syrinx in his spine but not enough to warrant us to intervene and his EEG showed added activity on the opposite side of his head and for the first time ever I had to press the “event” button during his 24 hour EEG. We suspected maybe the new activity was his reason for the brief headaches – but that didn’t explain the backaches or sickness.

In his first year of life Chance was always a highly symptomatic child when his shunt wasn’t functioning. Often times he’d show symptoms before tests really would show much evidence of a malfunction – so at the beginning of May we were reassured that we would know if something was wrong with his shunt and that we would watch him closely for more prolonged symptoms and see if the change in his seizures medication helped him. He continued with brief symptoms that made me fear that his shunt might be intermittently failing – Wednesday morning his shunt decided that after 1,325 days of working well to support our son’s life that it would stop functioning. I recall that morning watching Chance closely because he complained of a headache and then slept – and the few times he awoke he was fussy, clingy and restless…when he was awake he was not the energetic little boy we know so well. I took these photos and shared my concerns with his neurosurgeon and prayed once his big brother was home that he’d perk up – a moment later he projectile vomited all over us both and at that moment I knew he was malfunctioning. He was presenting symptoms just like the times he had malfunctioned as a baby.

We arrived at the ER and were taken back to his room quickly – everyone could tell he wasn’t doing well. He wasn’t very coherent most of the time in the room. When Chance malfunctions he is often staring off into a daze and it’s so hard to see him like this. I promised to send his daddy some pictures so he smiled briefly for a photo.

Over the past four years I’ve met so many parents in central Florida and online and the topic of shunt malfunctions do come up at times – I share some of these photos with the hopes it will help you all understand what a shunt malfunction for our son looks like – all kids are different – and many are not symptomatic when they malfunction, however, Chance has always been highly sensitive to pressure changes. If you wish to know what it feels like…think of the worst headache you’ve ever had – and that’s what our little guy was feeling this past week as we waited for his neurosurgeon to arrive.

I share these pictures hoping to help our family, friends and other spina bifida families understand what a shunt malfunction is like for our son so I took photos just like I always do, however, I did nearly have my camera taken from me when I entered the hospital. A security guard questioned my big black bag that I always pack with things that will last me if we stay overnight – and those that know me know that I take my camera with me nearly everywhere I go – especially when my kids are with me. I was told it was “policy” and all I could do was smile and tell the security guard respectfully that I have been in and out of the hospital hundreds of times, even for emergencies, and have never been told I couldn’t have my camera – in fact, I’ve shared our photos openly with the hospital to share our son’s story and have volunteered to help many other families. I was warned that it was policy and that I shouldn’t take pictures in the hospital – all I could do was shake my head and grab my things and escort Chance into the ER. Although I couldn’t photograph every moment we experienced with Chance because things were just so chaotic – I did take photos to share a glimpse of the moments before and after his 13th surgery. Thankfully the ER and OR team weren’t bothered by me photographing my own child going through such trying moments. When he grows older I want him to be able to see just how brave and strong of a kid he has been.

I watched him in pain in the ER for a short time and prayed that maybe it was just a virus or even a UTI – but he clearly was having head pain and wasn’t very coherent majority of the time. I had no doubt his shunt was malfunctioning but I continued to pray I was wrong. Chance underwent a CT scan and x-ray to help us check on his shunt.

As we waited for his neurosurgeon he continued to watch TV and zone out – but there were brief moments that he’d give me smiles.

Shortly after this photo was taken the ER team came in to tell us the pressures in his head increased a bit and that his neurosurgeon would be in shortly and they anticipated he’d be going through surgery. We held him down as nurses attempted IV’s multiple times and so his neurosurgeon could tap his shunt to confirm if it was working. I was praying that maybe she could just change a setting but by tapping his shunt she was able to tell that it was no longer flowing properly. Just as we suspected, his shunt needed to be replaced.

As we arrived in the prep area for the OR Chance continued to zone out. We remained by his side as the nurses and anesthesiologist prepared him for surgery.

Although it’s been over 3 1/2 years since we’ve taken Chance into an emergency surgery – many of the nurses in the OR area remembered him well. We were greeted with the thoughts, “oh Chance we were praying this wasn’t you on our list for surgery.”

He still had moments where he would smile for us – there’s no doubt that he knows he is loved.

Even after 13 surgeries – it never gets easier knowing your child is going through a surgery. Even with all the faith we have in his doctors – it’s hard not to worry and fear the uncertainty of the days and week ahead as we remain hopeful that this shunt will do it’s job for a long time. We greeted him after surgery and he was awake but still very groggy.

He had a tough time keeping his eyes open – we stood back and admired our beautiful brave boy.

And from time to time he’d open his eyes and smile – clearly looking for the reassurance that we were still there beside him.

Once he was stable we took him to his room to recover.

Typically children who undergo a shunt malfunction recover well and go home a day after surgery. His doctor was hopeful to send him home the next day but wanted to watch him closely to see how his recovery went. The next morning he woke up still very tired from surgery.

But he was all smiles – partly because he could order pancakes for breakfast.

Most of the morning after breakfast he was tired and very quiet. One of the doctors came to visit him – he remembered Chance from when he was a baby and his shunt malfunction history. Now that Chance is a bit older it was awesome to see just how much he interacted with Chance to help get him to smile. The fart app sparked a fun humorous time for them both.

We’re so thankful for those who stopped by to check on Chance – though we have family and friends in Orlando it’s always the families affected by spina bifida who step up to show their love for our son. Though Chance had his own toys as well as toys and gifts brought from others – very little made him want to move or play less than a day after surgery.

He’d still smile from time to time but he seemed to not be feeling himself still.

More than once during the day Chance crashed and got some rest. He continued to complain of a headache periodically as well – I grew more nervous if this shunt was working. Perhaps it’s my fear of his first year – more than once we’ve had a shunt fail within a matter of a day or two. So we agreed with his neurosurgeon that we’d keep him another night and if he still complained of pain or wasn’t himself we’d order more tests.

By the evening Chance was happy to have our family visit him – his buddy Jaylen sat and played nintendo with him.

I had hoped he was doing better seeing all of the smiles with our family but then just before bed he fell asleep crying with another headache – a bit of tylenol helped him rest through the night.

He woke up happy that his big brother called to facetime with him, but still he seem to be feeling pain. He began to feel a bit better at times – but it was really tough to know if what we were seeing was recovery pain or his shunt beginning to have issues.

By midday we agreed that we would have Chance undergo another CT Scan. The test would help us see the pressures in his head better so that we would know if something was wrong or if we could be reassured to go home. Chance has always cried so hard through all of his MRI & CT tests – but this week was the first time ever a radiologist took the time to explain what he was going to go through and helped him feel calmer about the test. It was the first time he’s went through this test without crying.

Once we returned to his room one of the doctors returned to ask him if Chance would like to see his tests. I adore that Chance got to be a part of his medical care – he got to see the pictures of his head and brain and got to see that his test showed that his pressures looked improved. We suspect his headaches are from him getting use to the changes in pressure in his head.

He’s now went through 13 surgeries – 10 of which have been on his head. We’ve been keeping a close eye on his incision and keeping it clean and paused to take a picture today. Here’s his newest battle scar along with his huge smile to help reassure you all that he’s doing a lot better since surgery. He still has a few minor headaches but thankfully most of the day he’s doing great.

He’s so happy to be home with his big brother Jaylen.

The two have been total goofballs!

And yes, leave it to Super Chance to be a little rebellious and defy doctors orders. He’s back to bouncing around like we’re use to.

Thank you all for your prayers & support – we’re happy to have Chance home and doing well.

Since before Chance was born so many people have helped us find hope and have helped us dream of our son’s great future. No words can really explain how hard it is to accept the day you learn your child may be born with such significant challenges that his life may always require support and to learn of all the things that are considered “wrong”. Over the past four years I’ve learned that though this news is tough – it is an amazing reward to raise a child with spina bifida. Yet still today there are families being told to give up on their child’s life – in fact, in a recent survey I did in central Florida nearly 50% informed me that they were told by medical professionals their child’s life with spina bifida would be too hard to care for or that they wouldn’t have the quality of life worth caring for. The world doesn’t need more doctors telling us only everything that is wrong with our children – but instead ones that help us dream.

I’ve had so many request I share Chance’s story and pictures with our own doctors to make sure they know his life is so much more than the diagnosis. However, our doctors, were the ones who brought us so much hope from the moments we learned that he might be born with spina bifida our fears were calmed and we were reassured. We were connected with families who were affected by spina bifida and they’ve been a tremendous blessing ever since. In fact my own ob/gyn doctor is among the most influential of all of our friends & family who have helped me dream.

You see the past four years, since even before Chance was born I’ve been fearing so much and trying so hard to dream. But it’s hard. I have accepted reality – and I know that there is no cure for spina bifida. Chance is doing amazing right now but there are so many things in his life that will never go away and will always require care. In his first year he had went through so many medical moments and surgeries that I honestly was so frightened for what the years ahead would be like. I still recall being in the hospital as Chance had just went through is 6th, 7th and 8th surgery within a matter of three days and writing my doctor with my worries, not just for Chance – but for myself. After having Chance I didn’t have the easiest recovery and had continued abdominal pain that lead to me undergoing surgery when he was about six months old due to an infection that was lingering from the c-section surgery I had with him. At the time I was so much more concerned with just trying to keep his shunt working and tried not to think too far forward because I didn’t want to become emotionally overwhelmed by milestones he wasn’t meeting. In the moments before I was put under anesthesia for surgery I still recall feeling shaken and cold and just wishing it was over and looking up to my doctor who helped keep me calm in those moments and telling me to dream of great things – like my baby boy walking. “Dream of Chance walking on the beach,” she said. Some kids born with spina bifida do walk, but many do not – so since before he was born it was hard not to fear whether or not he’d ever walk. Never once did my doctor question if he would walk – instead she helped me dream that he would knowing surely dreams give us something to look forward to. It was a thought that has stuck in my head and has echoed in this head of mine for the past 3 1/2 years. Yes, as I’ve heard so many other families are told negative things about spina bifida by their doctors – mine helped me dream. Never once questioning his disability but instead reassuring me every step of the way.

Over the past four years as I’ve been on this journey photographing families affected by spina bifida I’ve dreamed of Chance on the beach with his friends – praying he is forever reminded that he (and we) are not alone on this journey. Two years ago I joined Chance’s friends, Grayson & Gabriel, on the beach to capture this moment. I recall feeling so driven to take a beach shot in 2013 and recall going to this session feeling a mix of uplifted and heartbroken, because as his friends were just beginning to walk independently, Chance could only take steps if he had a klunky walker that wasn’t meant for the beach. Instead his friends joined him sitting on the beach to capture this adorable moment because Chance couldn’t stand or walk without support. Gabriel & Grayson were the two babies we first met after Chance was born and no matter how many other spina bifida families we meet in the years ahead these two will always hold a special place in our heart.

Fast forward to this spring and Chance is getting stronger – it’s taken over a year of hard work with learning to use crutches and he finally has mastered the ability to take steps with them. We all agreed to meet up again at the beach with the hopes to capture this moment that has been in my head for 3 1/2 years. We took a series of shots, including this one:

Now that the kids are mobile – they were on the go the moment we said they could walk for photos. I admired my little guy – his friends are able to walk without devices and only one uses braces but walking on sand is really tough, even more so for a child born with spina bifida who has mobility challenges. Chance used those crutches to his advantage and took off ahead of his friends.

We captured so many precious moments, even the ones when they were racing and Chance’s legs gave out and he fell.

The echoes in my head that have left me dreaming of my son walking on the beach…are now reality and no longer just a dream. The past four years have seemed so long as I’ve waited for Chance to progress with his mobility – to be honest, wishing he would take off walking independently like his friends. At times it felt like these moments were never going to happen. But they did. Words really can’t adequately describe how happy my heart was to capture these moments.

Though Chance is now walking with crutches he will likely always need braces to help support his feet. Only time will tell just how stable his legs and feet will be. We’ve accepted the reality of spina bifida and that he may always need some assistance with walking and though it’s been hard to accept we are learning how to help him continue to live a great life and do all of the things any other child may experience.

If you are reading this and happen to have a child with spina bifida and are feeling discouraged about the milestones your child may not be reaching – I pray this brings you hope and helps you dream too. As hard as it is to accept when our kids don’t meet milestones or are experiencing delays – it’s so worth the wait because we’ve learned to appreciate these moments so much more once they do happen.

To my amazing doctor – thank you for always helping me dream and bringing me reassurance through so many of the challenging moments that have left me feeling weary since before our baby boy was ever born. I now dream for a world where there are more doctors like you – to give families the hope needed to realize they can dream of the great things their child can achieve despite living a life with spina bifida. 

Yes, I admit…I feel like the worst mother in the world for considering giving up on my child’s life. If you are in this position, please know that you are not alone. I have been there and I shared my open thoughts during Chance’s pregnancy on my blog. Sharing my thoughts openly lead quite a few people to think less of me because as I learned all of the complications that my son would be born with – I was scared and wished I could give up and start over. I was frightened of the unknown and wished for a healthy, perfect newborn baby. Little did I realize then that my baby would be born perfectly made, even with the birth defect spina bifida. Sometimes it takes time to understand that we can’t really define “perfection” until we experience it first hand.

Any mother who faces a spina bifida diagnosis (or any adverse diagnosis for that matter) should not be scrutinized for having fears, worries or wishing she could give up because to be honest…raising a child with spina bifida has not always been “amazing”. I had my moments when I was pregnant where I wondered “how am I going to do this? how are we going to raise a child with spina bifida?” I was worried how we would be able to care for a child with significant needs. So let me reflect as I pray to help those mothers who have aborted or who may be considering giving up – because though there is so much hope – I DO understand how easy it is to want to give up when all you learn about spina bifida are the things that are “wrong” and the medical challenges a person may face.

I learned our son Chance would be born with spina bifida when I was 17 weeks pregnant. I feel blessed that during the diagnosis my doctors were so supportive and never once encouraged termination, however, I was informed it was an option. When I first heard the words “spina bifida” from my doctor she told me “do not google spina bifida” and went to say that anything I’d find online would scare me. Instantly I was worried how much might be wrong. The very next day we received the official ultrasound diagnosis showing all of the key indicators for spina bifida – the defect in his spine, the banana sign and the lemon shaped head inutero. I knew something was wrong with my baby but I didn’t understand just how “bad” his spina bifida might be. And I desperately wanted to know anything and everything I could learn about spina bifida so that we knew just how much we were up against. I remember wondering “what would his life be like?” We left the doctor knowing that we had some tough days ahead that were filled with a lot of tears as we were left with trying to understand his condition, something even the doctors couldn’t predict. Every doctor we spoke with said that we wouldn’t know just how significant the challenges would be until he was born.

Over the course of the next few weeks after receiving the diagnosis I cried. I prayed. I read anything and everything I could find about spina bifida and hydrocephalus. I learned that googling the topic would lead to horrifying search results. No wonder women wish to give up when most of what is found on google, especially google images, are horrifying images of babies before they had their back closure surgery and of babies with hydrocephalus with enormous heads that looked like something out of a sci-fi movie. No one should ever have to see such horrifying images and this is not what the world should have to relate spina bifida or hydrocephalus to – because if a spina bifida patient gets adequate medical care they CAN lead a long and healthy life and go on to fulfill great roles in society.

Although I don’t think I need to justify all of my reasoning behind our consideration to terminate. I do now think it’s time to write openly – to help future mothers who may go through these challenges but to also help the many families who have followed Chance since before he was born. After the diagnosis I was avoided like the plague. Our family and friends were in shock – and as I tried to talk about all we were coping with most people had a tough time discussing it because they not only were heartbroken…but so many said “I don’t know what I’d do if you were in your position”. Or I had some said “I don’t think you want to know what I’d do.” Yes, I wanted to know….because we were at a loss for what to do. No matter what choice we decided we were guaranteed it would be challenging and would bring heartache. You see, though we had begun to learn so many families felt their children with spina bifida were blessings – we were frightened of the challenges and we did not want our child to experience pain or suffering – and we were afraid of he unknown. We didn’t know how amazing his life could be, until he was born.

One of my dearest and best friends who I’ve known for over 15 years called me a few days after the diagnosis. She was the friend that was there through so much of our heartache (we experienced 3 miscarriages over the years) and I could always rely on her to give me her honest, yet caring, opinions. She shared with me that her own mother was born with spina bifida. She asked me if I wished for her opinions – and of course, of all the people we can trust and wish to share their thoughts with us…our friends can help us. She said if she were in my same position that she would terminate. Instantly I thought to myself, “how on earth? your own mother had spina bifida?” She shared that she grew up watching her own mother experience the challenges of spina bifida and shared some of the things she experienced. She went on to say that she had seen our family experience enough heartache and that she knows having a child with spina bifida would be hard and that she just didn’t want me to hurt anymore. It was the first time I truly thought “I can’t do this”. For the next few weeks we seriously considered termination. I read countless resources, even research studies from years past that showed similar thoughts – that teens living with spina bifida would suggest their mother abort if she was to become pregnant with another baby with spina bifida. Yes, it’s sad that research projects like that even existed. Even after meeting with a genetics counselor I was informed that the termination rate is suspected to be 50-80% for babies with spina bifida. All I could think was…there’s a reason why so many people are giving up, but really, why? Why are so many families giving up? Even if they don’t give up, why are women (like me) even considering it?

As I tried to understand my options and so many refused to share their opinions I reached out to the spina bifida community but also to our friends and family and asked for their opinions. I learned really fast that asking for opinions about “options” are not the best thing to do, especially with those who have babies with spina bifida. The survey of my options was nearly a dead tie – and if I can be honest, after talking a lot more with my friends and family through emails and phone – so many were accepting and even admitted if it was them…they didn’t know how I’d continue the pregnancy and that I should terminate. Some of our family who even have a connection to the medical community admitted terminating their own pregnancies for personal or medical reasons and some said they didn’t know how they’d be able to care for such significant medical needs such as the potential need to catheterize a child. It was sad, but it helped me understand that our family understood our fears. So I have no doubts these numbers in this poll are so evenly divided because the moment I shared it – it was seen by most mothers online who had a child with spina bifida. I felt attacked – as they all desperately wanted to help me see that spina bifida was a condition that was manageable – and that my child would amaze me. But when you’re pregnant I admit – its so hard to see past the worries and challenges that we learn about the birth defect to see the optimism in the diagnosis. Sadly majority of people who saw this survey felt it was my “justification” to terminate – when really I was scared to death of the diagnosis my son was faced with and prayed for others to share their opinions of what they’d do if they were in the same situation.

After sharing that survey I had several mothers who had aborted their baby with spina bifida message me. Sadly they were all told such “bleak” outcomes and many were even advised to terminate. Now four years later, I’ve heard from and met so many families who have nearly the same story. They either were advised to terminate, were told only the worst outcomes, or just could not find the hope to continue their pregnancy. It’s sad that there’s not support for those who experience a prenatal diagnosis of spina bifida. The fact that this is still happening in 2015 is evidence that there are still big challenges with the spina bifida diagnosis.

I am not one to question a person’s beliefs regarding abortion – nor is that the point of writing this. But I can tell you I understand the strong emotions that arise when you feel your baby may be born with an adverse condition like spina bifida. I don’t think most really “get” what goes through a mother’s mind as she may be considering her “options” after the diagnosis. It’s sad that when a woman is vulnerable and wishing for support – that if she speaks openly about this topic of termination that she’s instantly perceived as a monster. If you are a mother considering giving up, I assure you – you are not a monster for wishing to give up when you fear all of the things “wrong” with your child…but yes, I too pray you will find the optimism like I did. Here’s one of many cruel comments I received in 2010 after I shared my thoughts – ironically this comment was posted to one of my photo sessions not related to spina bifida…so really I had quite a few people who were angry at me. In fact there were people in this world that hated me for sharing my fears so openly.

I do remember so clearly the day we visited Chance’s neurosurgeon for the first time. My mind had already been circling with thoughts about our options and as I struggled to understand so much I spent part of the day thinking through a mindmap that will help you see the exact thoughts that crossed my mind the day that we nearly gave up. We were told the neurosurgeon is the one that brings all families hope and that they can help a family understand the specific challenges a baby might be experiencing based on the ultrasound and MRI images. So if you are out there wishing to bash a mother for wanting to give up – I hope this helps you see a glimpse into the feelings many mothers experience when they face a spina bifida diagnosis. I not only feared how many medical challenges Chance would face and how significant they would be, I feared the costs of raising a child with spina bifida, and how it would impact my family and my career. I know that if a woman considers termination – it is not because she is a cruel heartless monster. Every thought on these mindmaps was written through tears – as I tried to deal with the internal battle of whether or not I would continue our pregnancy with Chance. It hurt so bad knowing that I could easily understand all the reasons I wanted to give up, but never once did I want to give up on my child’s life.

We sat down with Chance’s pediatric neurosurgeon and all she had was optimism. She had cared for countless spina bifida patients and said there is so much hope and as we struggled for answers regarding his specific situation – she ordered a fetal MRI so she could get the most accurate look at his “defect” – this image reassured us that we were in a “best case scenario” that his opening was small and low on his back, leaving him with potential for a good outcome – but we were told we would not know how much he would be affected until he was born.

Do you want to know why so many women are terminating or considering terminating a child with spina bifida? All they can find online is horrifying and what they are provided by medical teams is outdated and does not bring hope. Here’s what our doctors and genetics counselor provided us – most of these handouts were decades old – with the oldest one dating back to the 1980′s.

No mother should be receiving 30+ year old resources for support. Some of these resources said our child’s life would be very challenging and that we wouldn’t be able to do normal things, like travel. It’s unfortunate. Sure there may be some medical information in this material – but all it made me fear was “there’s too much wrong with my child”. Seriously, if you are sitting there worrying that you can’t do this because you’ve just gotten the diagnosis I “get” it – because us parents have received nothing more than “medical jargon” that only scares a parent more. Yes, I pray the doctors please tell us what is “wrong” to help you understand spina bifida better – but I pray those in the medical community who have contact with newly diagnosed patients can help humanize the diagnosis. Often times those that have the knowledge and ability to can’t bring hope until it’s too late. It’s time to improve the resources for expecting parents so that their diagnosis is more humane – so that as they learn of all the challenges their child may have – they are able to see the hope.

If you are considering terminating your pregnancy due to a spina bifida diagnosis I have a few words of advice that may help you. I can’t make your decision for you, it’s obvious what I chose – I hope you too will find the hope to be reassured that raising a child with spina bifida is possible…and honestly, it can be a life changing and amazing experience that you will come to appreciate – so here goes, I pray this helps you if you are torn with these “options” you were given:

• Avoid googling the topic, especially google images – it will only scare you and I can tell you firsthand that most of what you can find on google is NOT a real outlook on what life with spina bifida is like.
• Read the resources on the spina bifida association’s web site for newly diagnosed families. SBAA is one of the best resources to learn accurate information about spina bifida.
• Contact a pediatric neurosurgeon immediately and schedule a consult. Seriously, looking back now – I wished I had called her the same day as the diagnosis so that I could have spared myself so much of this heartache. She helped me understand spina bifida and what we had ahead so much better.
• Contact your local spina bifida clinic. Typically the clinics are lead by nurses who care for many children with spina bifida, in fact – that’s their job – to care only for children with spina bifida and to help manage their care. They have become like family to us. They can help you understand what spina bifida is better.
• Contact your local spina bifida association chapter or support group closest to you. This will help connect you with other families who are affected by spina bifida and to be honest, they are the best resource you will have besides your child’s medical team. Our spina bifida community has become like family to us as well – they will be there when the most challenging things happen, things that often times your own friends and family may never understand.
• Connect with a spina bifida group online – facebook has many (search for united by spina bifida, take that spina bifida, Expecting & Considering Fetal surgery for spina bifida, or the  sba facebook parents group). As you have questions parents and adults affected by spina bifida are helpful in answering questions.
• Go follow the new Redefining Spina Bifida facebook page. Several photographers have teamed up with me to share images of individuals affected by spina bifida – praying that can bring you hope. But also praying that it will also help you see what life with spina bifida is really like.

I don’t want to sugar coat a spina bifida diagnosis. I won’t lie, raising a child with spina bifida is not easy. In fact, we’ve faced a great deal of adversity. In nearly four years of life Chance has endured 12 surgeries, has spent six weeks of his life in the hospital and has been in hundreds of doctors appointments, tests, and therapies. Most days we don’t even think about spina bifida – because he really is like any other child his age. He’s smart, adorable, strong, and has the best smile. But he does have challenges that have no “cure” – because you see when you opt to continue with “life” you are agreeing to a commitment that you will be there for your child for “life”, and really how is that any different than being there for any child (with or without spina bifida) for life? Most days he amazes me and makes me smile – but there are still days that I find myself overwhelmed and even asking myself “how are we going to do this?” But I will tell you that choosing life and giving our son a “chance” was the best decision for our family and one I am glad we made. He’s taught me so much about life – surely that chances are worth taking – but he’s also redefined my perception of perfection.

For those of you who may consider giving up on your child due to a spina bifida diagnosis, I can assure you of a few things. You are NOT a monster for having fears that make you wish to give up. You CAN do this – raising a child with spina bifida IS possible.  You know what’s amazing when you face such a tough decision – it WILL change your life…no matter which decision you make. For me, it has been so tough AND so amazing. The mother who was once perceived as a monster by so many people who followed my thoughts on nearly giving up now spends a considerable amount of time volunteering to improve and transform the world’s perception of spina bifida. No, we can’t take away the challenges our kids may face in life – but we can help so many mothers see the light and help them see that their child’s life IS worth it. We can help doctors better understand spina bifida so that they help families make informed decisions. If you are considering giving up on your child diagnosed with spina bifida I understand, because I was you just over four years ago. If only I could go back in time and know what I know now. Having a child with spina bifida isn’t the end of the world – in fact, it will change your world for the better regardless of how many challenges you child may endure. I hope somehow this has reminded you just how amazing “chances” can turn out to be.

So first, here’s a sweet moment with Chance at the end of 2014 just before therapy. For those of you wondering how life has been since he’s gotten his wheelchair – he loves it. And he is pretty independent in it’s use about 99% of the time. We’ve learned to watch for bumps (he’s fallen twice due to silly bumps in the sidewalk) and he’s continuing to learn to transfer in and out of it on his own. We primarily use it in times when we wish for him to be independent and know the distances are too far for him to walk with his walker. He does still fatigue walking with his walker after short distances.

Last August he went through a lot of tests to check on his health. Thankfully since then his health has been fairly good so this month he only had to go through one test, his renal ultrasound to check on his kidneys. I feel so blessed that as he grows he’s beginning to mature into a great little kid. I have memories of him screaming as a baby through this relatively simple test – and now he is so well behaved.

Overall we have a lot of updates that we really haven’t spoken too much about publicly. First of all, his shunt and neurological health are doing great. Last August he went through a sedated MRI to check on his spine and brain and his shunt is working well. He had one scare in October where we could see his shunt tubing through his belly and began to get sick – we spent an evening in the ER and learned his shunt was doing great…but he had a pretty significant case of constipation – something that is common with individuals living with spina bifida.

At the end of last June Chance had a really serious urinary tract infection. It was that bad that he was hospitalized for 4 days. We knew they could happen and he had minor ones in the past but this one was rather scary. It started with stinky pee. And a few days later he woke up just seeming tired and not himself. Normally he is full of energy during and after a swim lesson, but he was super fatigued, began to get sick and ran a high fever fast. By that afternoon we were in the hospital and praying they’d figure out what type of bacteria he was fighting – it took 2 days before they determined that he was fighting an infection that didn’t react to broad spectrum antibiotics. We went home and within a month later he began to get another UTI, thankfully much more minor.

By August he underwent a urodynamics test. It’s one of my least favorite tests to see him go through. Essentially they catheterize him and push fluid into his bladder to see how much it will hold and they attach sensor that can show how his bladder reacts and at what point it feels pressure and causes him to use the bathroom. Yes, it seems very invasive – but thankfully he tolerated it well this time. It’s still tough to gauge just how much he feels and can control so these tests are necessary to help the doctors understand how his bladder functions. The test showed that his bladder can hold 150cc but that it begins to indicate “pressure” at 100cc meaning he is likely not emptying completely (which causes UTI’s) and that he’s likely to “leak” at some point after he reaches 100cc. That test along with the two most recent UTI’s this past summer were the indicators that brought the decision that we were fearing. Our little man now needs to be catheterized. It is something that he will need for life. We can pray for a miracle that his body will adjust and change and he’ll be able to control these things – but the reality is…majority of children with spina bifida require intervention to help manage the care of their bladder and kidneys. If we neglect this care we can not only create damage to both but it could prevent him from achieving continence and independence in caring for these needs. We’ve been told by many that the earlier this care begins the easier it is for him and that he will resist it less. In September we began catheterizing him every 3-4 hours during the day. Right now this is the plan of care that will help us keep his bladder and kidneys as healthy as they can be. Thankfully he has been amazing as we’ve transitioned to learning to provide this care to him. He’s already showing an interest in helping which shows us promise that in time he will be able to do this care on his own.

This past summer Chance also began to show signs of constipation. We began him on miralax again, but even that wasn’t enough. There were times over the past six months that he’s went 3, 4 or even 5 days without a bowel movement. Constipation can be worrisome for a person with spina bifida because it can impact them in so many ways. The symptoms are similar to a shunt malfunction in that it makes him sick. We’ve lost count of the number of times Chance has gotten sick over the past six months. It can impact his shunt and even lead to a malfunction – we were concerned in October because he was that backed up that we could see his shunt tubing protruding from his belly. And if constipation gets bad enough it can cause an obstruction which could lead to surgeries. In the fall we saw the GI doctor for a follow up appointment and we agreed it was time to begin the process to intervene and begin his bowel management care plan as well. Just this past week we began the cone enema – yes, something I never wanted to have to do to my child. All of these things that are such personal parts of his care…are things we prayed we could avoid and not need to do. But now they are necessary to keep him healthy. Our next goal is to work towards keeping him continent and then helping him reach independence. We are still very early in this part of the journey but we are hopeful it will help our boy. The plan is to do this routine every other night, which involves more than a half hour of waiting in the bathroom with him. But the upside of it all is that it’s highly likely he will stay clean in between – which will be so important to us as he grows. We’ve been told by so many other families that of all the challenges…the bladder and bowel care are among the most challenging things to deal with. Thankfully his GI doctors are proactive and they’re prescribing a newer system called the peristeen that is believed to be more likely to help him become independent in this care too. If you are wondering how long he will need this care, it is much like catheterization…in that he is expected to need intervention for life. We pray maybe he will prove otherwise, but there aren’t many living with the type of spina bifida he has who manage without some type of bowel management care plan.

This past Friday we met at the spina bifida clinic for his bi-annual clinic to discuss his care. I had suspected a week or more before that he might be brewing a UTI…if you see this photo you can see he wasn’t feeling 100%. He had a low grade fever this day…which lead us to more tests to check and make sure he had nothing serious going on. Thankfully the test came back inconclusive of any serious infections that needed treatment. It was that reminder that at any given point his health can change – and I was thankful all of his doctors agreed to be proactive and test to make absolutely certain it wasn’t a serious infection.

Chance was adorable at clinic…he rolled in and out of his room and played on the nintendo most of the morning. This photo below was taken just after we met with the orthopedic doctor. He’s met with more than one in the past month. After getting his most recent braces we realized that the measurements seemed a bit different and that one leg might be slightly longer than the other. So Chance was looking at the x-ray of his legs – that have been analyzed a few times as the doctors, orthotist and therapist decide what we do. We’re hopeful that it’s just a minor difference – but it’s possible that he may require a lift under one shoe so that he’s level. Thankfully it’s not a huge length difference and we’re working on trying to adjust things as this little guy of ours grows so fast. The doctor we saw at clinic felt the difference was so little that nothing was needed but began to look closer at his hips and back. Thankfully his hips are still healthy and not dislocated (which happens to some people with spina bifida) – but it was noticed that he does have mild scoliosis. I knew it was possible…but it was the first time I had heard it be a potential thing for us to keep a closer eye on. The doctors will be doing a test to take a closer look at his spine before his next clinic in about six months.

Yes, I admit these recent changes over the past few months have been a lot to accept and transition to. I feel quite blessed that Jason and I are able to juggle differing work schedules to make sure one of us can always provide this care for Chance. Of course we both feel blessed that Chance has two of the best siblings…Jaylen and Hope continue to be so loving and protective of their little brother. They realize how much he is growing and I’m sure are beginning to see how much his care is changing – thankfully they have been the most loving siblings as we go through so many of these changes with Chance together…and that in itself is the best reassurance for us to have, to remind us that we will make it through every challenge together.

Chance continues to do therapy at Arnold Palmer Hospital weekly for an hour each week. As he grows older he has begun to respond better most weeks. Some weeks he can be a little stinker and resist therapy but most weeks he shows his silly side as we try to make therapy fun for him.

This past fall Chance received his new braces that bring him a bit more support. We’re hopeful these modified HKAFO’s won’t be needed forever – but he needs this support, otherwise he buckles easily at the knees and hips. At the end of last year he showed off his standing abilities with his walker…yes, he can lift his walker for a few seconds when he’s wearing these. He has stood for 10 seconds independently and has taken 5 independent steps with these new braces. Unfortunately he has a lot of balance issues and so most times he looses his balance in a very short time, even with the new braces.

As we await his new forearm crutches to arrive, he’s spent time at therapy using various devices including various types of walking sticks and canes to learn to walk. He has taken several steps more confidently without losing his balance as easily with a cane like he’s using in this picture.

He’s also showing more confidence to take steps as we hold just one of his hands. This is one of my favorite pictures taken of him in 2014 (yes, one of hundreds, lol). It was taken on Thanksgiving as his big brother Jaylen was helping him walk from the couch to the other room. We are so blessed that our kids have such big hearts to help their little brother when he needs them.

Chance has been swimming with Harvey Barnett, the founder of ISR, since May of last year and it’s been such an amazing experience for him. It may be helping him learn to swim and learn survival skills but I’ll be honest, it’s like therapy for him and it truly has helped him become so much stronger this past year. In the pool he will stand on Harvey’s hand now for nearly 90 seconds. I documented all of his swimming this year in a book that you can preview the entire book online – it really has been an incredibly beautiful experience to look on for our boy. Chance was also featured in a short news segment in September – if you haven’t seen it you can view it on WFTV’s web site. We’re incredibly proud that our boy has helped inspire so many other children with special needs to have an interest in swimming.

We’re at this point that we see Chance is so close to taking off independently with walking…but his little legs just don’t work the same. He works so hard at therapy and we continue to pray he will be able to gain the strength to stand and walk independently.

We learned of a private therapy group, Believe Therapy, that other families affected by spina bifida have used. We learned they had some openings before the holidays and elected to invest some of our HSA medical funds into helping our boy. The challenge for us in using this therapy is that it is not covered by insurance so we have had to pay out of pocket the full amount. But we agreed it was worth seeing how he would do and try them out. I’ll share just a few photos, but I have to say that the experience has been pretty amazing. They have different ways to engage the kids and can isolate muscle groups. Chance had so much fun nearly his entire time working with them in the 10 hours we invested.

Some of you may have seen on facebook or twitter, but we were that impressed with this new therapy that we’ve opted to try fundraising to help raise the money needed to pay for intensive therapy. Intensive therapy is 5 days a week, 4 hours a day, for three weeks. In addition to therapy he’d need additional separate sessions in between intensive sessions to help sustain his strength – so we are hopeful our family and friends who wish to help are able to do what they can to help Chance’s therapy needs. Since he was born we’ve maxed out insurance/medical expenses and are currently paying more for medical and insurance than we spend on our home mortgage and vehicle costs. If you’d like to contribute to his fundraiser to assist with his therapy needs it’ll be open for 18 more day – here’s the link.

Thank you all who continue to pray for our boy and to all of you who have supported us over the years. We knew this journey raising a child with spina bifida wouldn’t be easy and that his needs would continually change. We know the complexities of spina bifida aren’t always easy to understand…we’re doing out best to understand them ourselves. We hope this update has helped you all understand how life for our little guy is changing…and that it reassures you that he will continue to amaze us all.

For the 4th year I am excited to share this year’s spina bifida awareness campaign for the Spina Bifida Association of Central Florida. This year I met with over 30 individuals living in central Florida with spina bifida to capture moments that will help us make an impact in our local community as we prepare for our 4th annual Walk-N-Roll for spina bifida next week. Over the past 4 years I’ve been amazed and touched by the response of this work – this crazy idea to volunteer my photography to help this community grow and seek support has lead to some of the most inspiring experiences and meeting some of the most beautiful families who are all affected by spina bifida, just like my own. So much of my heart goes into capturing these moments – it’s always an emotional time for me as I finish up this campaign and am reminded that four years ago we had just learned our son would be born with spina bifida. The spina bifida community still lacks so much of the support it deserves and needs to help these families – and so many misconceptions about this birth defect still exist. I may not be able to solve every problem associated with spina bifida – but I’m convinced we can do so much more to help redefine the world’s perception of spina bifida.

I hope you all enjoy this year’s campaign – it truly has been an honor to work with all of our families. We hope you’ll take a moment to take a look at this year’s campaign – I’m convinced you will be as touched as I was capturing the moments.

If you’re searching for the past 3 years worth of spina bifida awareness campaigns I’ve created for the Spina Bifida Association of Central Florida here’s the links:

• 2011 Spina Bifida Awareness Campaign
• 2012 Spina Bifida Awareness Campaign
• 2013 Spina Bifida Awareness Campaign