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.

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

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

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

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

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

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

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

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

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

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

Yes, two weeks into the kids’ school year and I’m just now blogging about it…there’s a shocker for those of you who have been following my blog. I’ve been blogging since before Hope ever began school and the 1st day of school was always something I blogged about on the very first day of the school year. Sure we can blame it on me being busy, or perhaps now because I have two kids in school…but no, the start of the school year was just a tad bit more crazy than we anticipated.

I suppose I should rewind to the week before school started…when we got to go to the annual meet the teacher. It’s usually a fun day where we meet the teacher and get to revisit past teachers, we drop off supplies and it’s sort of like a dry run of beginning a new school year. Usually by this point in the year we’re all realizing summer has come to an end. I know most parents are super eager to get their kids back in school, but I’m the one with mixed emotions about it. I actually adore having my kids home but adore knowing how much more they’re getting out of being in school. The new school year is always one more reminder that these little ones are growing fast. No matter how busy I am it’s always that moment I pause and soak it all in realizing that as each year passes I need to try not to think so much about how much time has passed or how much they’ve grown…but instead enjoy the moment alongside them as they grow before my very eyes.

Here’s Hope the day of meet the teacher…before we actually meet the teacher we get to check out who is in her class as we learn who her new teacher will be. I don’t think she was too thrilled to learn that most of her best friends were in other classes.

This was one of those years that certainly felt a bit more overwhelming as we signed Jaylen up for preschool. It’s only a half-day program at Hope’s elementary school but it still hits you when you realize your baby is going to school for the very first time. We stopped by Jaylen’s preschool class to meet his teacher and he was both excited and nervous.

I’m always thankful every year that Jason gets to join me at meet the teacher…I’m the emotional one so I leave it to him to help the kids warm up to the teachers as I’m off observing things many times with my camera and sometimes trying not to get teary eyed…like I was this day watching him for the first time so close to beginning school. His teacher prepared a place for them in their class with their name, a pencil (yes, and a latex balloon that left us a little nervous due to Chance’s latex allergy), and a bag of goldfish that said “Jaylen is o”fish”ally a preschooler”. Pass the kleenex now…as I’m still in disbelief.

When Jaylen’s nervous he often puts his hand above his head, almost as though he’s trying to hide. The brief time we chatted with his teacher he did this…and was so darn nervous. Though he was nervous…I had no doubts that it’d only be a matter of time before he fell in love with her…she’s been pretty amazing with our baby boy thus far.

With Hope we never were able to get her into a preschool, it just never worked with our schedules at the time – and I remember being worried maybe she was missing out. So I’m excited that he’s in school…but parts of me think maybe that extra year wouldn’t have been so bad for Jaylen to help him gain the confidence that I remember helped Hope between the ages of 5 and 6…the little guy is so nervous still. But I realize we had to face this moment of sending him off sooner or later…I told him it’d be a lot like playing at childcare at the Y…but that he’d be learning lots of new things and meeting new friends. I don’t think that really calmed his nerves that much though.

The following morning we got into a new routine beginning the school year. Getting two kids ready for school, all while still juggling our other little man definitely is an interesting new challenge. We’re moving even earlier this year because Hope is a safety patrol this year and has to be at school earlier and Jaylen’s preschool class also begins earlier. I seriously cannot believe she’s in the fifth grade.

I begged Jaylen to let me take just one photo of him and his sister before school began. He woke up that morning saying he wasn’t feeling well…but at the time he had no symptoms of being sick…and I thought maybe it was just his nerves. So we sent him to school…tears and all. It wasn’t the happiest memory for any of us.

As he cried, Jason walked with our baby boy…

When Hope began kindergarten I was still pregnant with Jaylen…so now with him starting school it was that deja vue moment remembering her very first day of school…and realizing just how much he’s grown since that day. He’s such a big boy now.

Thankfully in preschool we are allowed to go into the classroom the first day. In fact, we have to be present to sign him in and out every single day. This gave us a little time to help get Jaylen warmed up to his class on the first day.

There were tears on the first day…but we knew we had to let him get through his first day. I didn’t want to leave my baby boy anymore than he wanted me to leave him.

We left his classroom and thankfully were uplifted seeing our baby girl…our big 5th grader, on duty as a safety patrol. If it isn’t obvious…she’s a tad bit proud of her new responsibilities. She let me take one picture before she had to get back to work…

Yes, I’m the parent that might be a bit ocd with photos…I don’t know if she even had any idea I was taking her photo – but I had to snap just two of her working so diligently. Surely this photo was intended to be taken…I promise I didn’t pose her for this…that 5 just happens to be her post for patrol…quite fitting for my fifth grade safety patrol.

We’ve taken a bit of a break from swimming but Hope continues to play in piano lessons. She’s getting to be pretty good. I’ll have to take some videos soon. I took a photo of her showing off playing at a birthday party last weekend. She’s been playing all sorts of things lately…she’s most proud of playing Taylor Swift, Jason Mraz, and One direction…oh, and Lincoln Park too.

Okay, yes, I may have been busy the last two weeks…but really I delayed sharing these moments more so because the first week of school was absolutely awful for us. On the first day of school Jaylen came down with a really awful stomach bug and was sick nearly the entire week. It made the first week for him really tough and it was almost like we had to relive the first day of school more than once. To add to it our entire house has been plagued with the stomach bug in the last two weeks…thankfully it’s finally behind us – but I wanted to end this little update on a happier note as the second week of school certainly has been more uplifting. Earlier in the week Jaylen returned from school proudly with a picture he had drawn in pre-k. They were asked to draw a picture of themselves playing a game…he said it was Jaylen playing the sunny day game…oh, how I adore kids artwork at his age! It’s my new favorite drawing of his…definitely one I’m keeping forever.

Knowing I’d update my blog with this little post to share these moments I asked Jaylen if he’d let me take a few photos…typically he isn’t the fondest of taking photos. He has to agree or the photos don’t turn out too great…thankfully he agreed…and smiled. My how our little man has grown.

I’m super excited to share that after his second week of pre-k he absolutely loves it. In fact the other evening he was crying…and I asked what was wrong…he told me he missed his teacher. This weekend is labor day weekend and he’s already counting down how many more days he has left until he gets to go back to his class.

Okay, kid…I know you’re going to grow…but lets not let this year pass too fast…I’m totally not ready to have a kindergartener and middle schooler! I have no doubts this year will be busy and awesome…but we’ll try not to race too fast past this year.

Dear Chance,
It seems like forever since I last updated my blog with updates about you. It’s hard to believe it’s been nearly six months and I’m fairly certain you have quite a few people wondering how you and our family have been. Life has been busy and thankfully you have been doing amazing. I’ve been meaning to formally share an update this past month but something inside kept me from writing. I can blame it on many things but being in the hospital yesterday with you brought back a rush of emotions and I felt it’s about time I share the little update I’ve been promising many who have enjoyed seeing your sweet face.

We’ve been so fortunate that we’re so close to it being a year since your last surgery. Your brother and sister have been enjoying every moment with you at home. Yes, we cherish the moments when you are doing so well.

This past March you got your first set of AFO braces and 1st pair of shoes. These braces will support your ankles more, which are weaker due to your spina bifida. My heart is overcome with joy knowing we are one step closer to helping you learn to walk. You’ve been working so hard since being in physical therapy. You’re still not walking, but we all have faith that you will soon. I took this photo of you the first day you wore your braces and new shoes…something tells me years from now we’ll all look back and smile at those pudgy little baby knees.

Being in physical therapy for the last 9 months has helped you so much. You’ve since learned how to roll over, sit, army crawl, crawl and stand with support. Those little legs are still weaker than we’d like, but they’re getting stronger by the day. Watching you grow and helping you through these moments has certainly given us all a fonder appreciation for the little things in life…just to get you to the point that you’re sitting this well took time. I still remember being so proud of you this day we worked on standing and sitting and how much you enjoyed playing.

Over the last six months since I last updated everyone your personality has grown so much. We all knew you were adorable before, but man your cuteness really has us all saying “awe…” – and you know it…back in March you started saying “awe…” too and leaning your head down mimicking us.

Since the beginning of the year I trained to run in a half marathon. At the end of April we all flew up to Louisville to run alongside a handful of others affected by spina bifida. We got to meet with a few of the mom’s I met online when I was pregnant with you and had learned you had spina bifida. I still can’t believe I ran 13.1 miles…but you know what, I’d do it all over again for you. The entire time I trained and throughout that run I thought of you and how you and so many others affected by spina bifida may never get to run. Running use to seem like torture for me. It surely still hurts to do still…but I feel blessed because I know I am able to run. And I have faith that it’s only a matter of time before you walk…and yes, I’ll keep praying for the day that you’re running into my arms. Until that day comes, I’ll keep on running…it’s been good for me this year. In fact, I’m pretty sure by around the new year I may run a marathon. Little man, you’ve motivated me in ways I never imagined were possible…and for that I am blessed.

During our trip to Kentucky we stopped for a few memorable days in Indiana visiting family.

Over the spring you learned to army crawl and by May you began to get up on all fours. Not quite crawling, but close. You surely love to get around on your own these days. I have no doubts that if you are able to walk…you will someday. You are just too determined not to.

Chance you sure are a little ray of sunshine in our lives. The last six months with you have been so much fun watching you grow. You light up any room you enter…and yes, you are silly. You can thank your big sis for your hair do the day I took this photo back in June. Something tells me you knew you looked silly.

It’s hard to believe that at the beginning of the year I was worried about you even being able to sit. Now you do that so well. I can walk away and have fun photographing you.

Those hips and legs of your work a little differently but I trust you’re going to get stronger. One things for sure…you definitely get cuter by the day.

And I seriously think you know it…everytime I think you’ve reached your all time cutest moments you surprise me with more moments that make us all smile.

I’m learning to trust that all this mobility stuff will happen on your terms when that little body of yours is strong enough to support you. You sure are a curious little booger and something tells me nothing will keep you from exploring this world.

Your officially no longer the baby of the family. Your cousin Phoenix was born in May. Over the last couple of months you’ve begun to recognize all the little babies I’ve gotten to spend time with …from your cousin to the newborns I’ve been photographing. It’s so darn cute seeing that sweet little face of yours. Don’t you worry little man, you will always be my baby.

This June we took a trip to the beach. Yes, we carried that hefty bowl of yours that you once laid in as a newborn. Something tells me you’re beginning to recognize it’s yours. You were ready to climb right in it the moment I set you down at the beach.

The day in June at the beach was filled with so many sweet memories. You had so much fun with Hope & Jaylen.

You’re such a big boy these days…I was able to let you play with your big sister and you both built sand castles.

Of course we had to take a few more photos of you in your bowl…I’m not so sure how much longer you’ll fit in it for photos. I have this feeling this is among the final photos of you in the bowl…perhaps we’ll get to try again before the end of the year to capture a few more memories.

You are a miracle Chance. I remember more than two years ago dreaming of shots of my little one on the beach…and you’ve blessed me with those memories and so many more.

I couldn’t get over your laughter while in the bowl…such a fun memorable evening with you on the beach.

I use to fear whether or not you’d enjoy the beach…but you sure aren’t bothered by sand one bit. You rolled around in it and had a blast.

Something tells me now the fun is about to really begin with you and your brother and sister. They surely treasure all the fun they get to have with you.

This June we also spent some time at the Spina Bifida Association of Central Florida’s walk-n-roll for spina bifida kick-off event. It was a little party they held for members to help kick-off the fundraising event that will be held at the end of October. Hopefully that silly face of yours will remind everyone that we hope for their support at the upcoming Walk-n-roll for spina bifida. We’ll begin pushing the word about “Team Chance”…we surely hope to have a lot more people join us at this year’s event.

I think of where we were just over a year ago, and it just amazes me the impact your little soul has made on the world. Even before you were born you had touched the hearts of many…but now that we get to see your sweet little soul your presence is that much more touching. I have had so many people all around the world contact me to thank me for sharing your story…even as far as Europe and Africa. Just this past week I had another expecting mother contact me to inform me that she learned her baby would be born with spina bifida and had a few questions and concerns. Before you were born I was scared and nervous of how challenging life might be with all the ways spina bifida might affect you and our family, but now that you are here all those worries are overcome by my amazement of your sweet little soul. Yes, I trust the saying “if God brings you to it, he will bring you through it.”

You continue to capture us with those big brown eyes…they speak to my soul.

This summer you spent a lot of time swimming. We took this photo near the start of the summer…yes, my little super hero swimmers.

We enrolled you in Safe start survival swimming lessons this summer. It took a little while to get you approved to go through the program because of your medical history, but we all agreed that you were healthy and strong and surely there was no reason to keep you from going through the program. We spent 10 minutes a day, usually five days a week and you spent most of this time learning to float.

We weren’t sure how you’d do with lessons due to your mobility challenges. But wow, you amazed us. With in the first week or two you were floating well.

And by the end of the month you were floating really well and managed to rollover well in the pool too. I’m not only in awe with how well you did but with how much these lessons helped strengthened you. You’ve begun to move your legs a lot more and you’re doing a lot more than you were two months ago before you began lessons.

I know these lessons haven’t been easy for you, in fact, I’ve sat and watched you cry through a good portion of them. But they’re helping you learn to survive in the water and they’re helping you get stronger. I have no doubts there are angels watching over you baby boy…this day in the pool I swear I saw one.

You’ve done so well floating that last week we got to begin to transition you to learning to swim to the wall…I admire how hard you work. I have to smile seeing how worked up you get during lessons…hopefully everyone feeling sorry for you crying during lessons realizes that you’re only crying because it’s hard work.

Yes, this is more like the little personality we see from you at the pool. All summer long when we’re playing you are all smiles.

You really have no fear…it cracks me up that I can take you underwater and you’re all smiles there too. I swear I think you’re part fish.

You love to jump in the pool from the wall too. Everytime I sit you down you reach out for me and we count to three…and in you go…all smiles. When we were on vacation close to two weeks ago you had a crowd of spectators cheering you on as you jumped in. Yes, they were amazed by you…such a little guy so confidently swimming. And the best part of all…the topic of you having spina bifida never came up. The fact that you have spina bifida too just makes it that much more amazing.

My water baby…yes, keep it up and we’re going to have to do a nirvana picture of you. I’m so glad you love the water…because we can all see how much it’s helping you. So I promise we’ll keep you swimming so we get that little body of yours stronger.

Close to two weeks ago our family took a trip to Marco Island for a few days. It was a long overdue escape for us to get away as a family and find a little time to relax. All this swimming in the pool I think has you spoiled…you weren’t as fond of the beach during our time there. But it was amazing to see you crawling on the beach. Yes, crawling…not army crawling…but real crawling.

I’m so excited to see you doing so much more lately…and we’ll keep doing everything we can to keep helping you get stronger. I will keep dreaming these little feet of yours will be walking on the beach someday.

Chance you’ve been a blessing to our family…so many of the challenges that have overcome our family over the last few years have been overpowered by the joy you have helped bring to our family.

We definitely can’t imagine life without you now.

During our trip to Marco Island you amazed me even more. Your Daddy managed to snap a photo on his iPhone to capture the moment…but just after I had taken a few photos you leaned over and attempted to look through the camera to take a picture. I didn’t expect that to happen yet…I guess it’s only a matter of time before I start showing you how to take pictures!

This past July we had to take you back to the hospital for the first time since January. My how we haven’t missed that place. We had to take you in to undergo tests that the doctors need you to undergo twice a year to monitor your spina bifida. In comparison to what you’ve been through in your first year of life…it wasn’t a tough day. But being at the hospital always brings back memories of all those tough moments you went through.

It was the first time we’ve taken your sister and brother with us when you’ve went through your MRI & ultrasound and lab tests. I was a little worried about how I’d juggle all three of you and how they’d do watching you undergo the tests…but by the end of the evening I was so glad they were with us…your big sister surely helped me keep you smiling. You both are so darn silly.

At the end of July we went to the spina bifida for your bi-annual visit to meet with all the doctors and discuss your progress as well as find out the results of the tests they had done the week prior. No matter how healthy you are these visits always leave me nervous, I suppose fearing the unexpected news of anything that could go wrong. Thankfully our time at the clinic has always been uplifting and we’ve been embraced by many doctors, medical professionals and other families affected by spina bifida who have all become like family. Yes, Chance…it makes me smile too.

In the last six months you’ve grown so much…you’re beginning to look more like a little boy than a baby. And the sun surely has lightened that beautiful hair of yours that has grown so long. I sure hope no one begs us to cut it anytime soon…we’re a-okay with you sporting a rockstar hair style for a while longer.

At clinic we’re always happy to spend a little time with our favorite nurse. We both knew before you were born that you’d be an amazing child…but now that you’re here we can feel the amazement when you are near us. It’s hard to explain…but we feel blessed. You are here for a reason…and now I’m beginning to “get” the purpose in all that has happened to us.

One of our favorite parts of being at clinic is seeing you near the pictures they have hanging on the walls when we weigh you in. We’re not so sure you recognize that that sweet little baby is you…but it is. I still can’t believe how much you’ve grown baby boy.

Your pictures hopefully help remind others of just how special you are. Something tells me that every day there’s a mother out there learning her unborn baby has spina bifida…and fearing how awful that news might be. Thankfully our doctors can share your beautiful face with everyone…I think about how close I came to wanting to give up when I found out you had spina bifida…all those fears were real, but man…if I had given up I wouldn’t have all these amazing memories with you.

They surely have come with many trying moments…but it’s the uplifting ones and the silly ones and all the breathtaking ones in between that warm my heart most.

Chance you’re a big boy now…you sit on the scale…and weigh around 21lbs. You’re growing so darn fast.

Part of me wishes to freeze time…because I adore you at this age…but I’m reminded that you get cuter by the day. Surely the moments ahead will continue to be uplifting.

At your clinic you got to have a little fun as they took all your vital signs. It was pretty funny watching you take  your Daddy’s temperature.

And your big sister, Dr. Hope, got to help out again.

At your clinic we got some great updates. I’ve been meaning to update everyone on how well you’ve been doing but I suppose after this weekend it only makes sense why I prolonged sharing this update. At your clinic here’s a few of the updates we received:

• Neurologically you’ve been doing great. In fact, at your clinic we were told that so long as you don’t have any other symptoms or issues that you’d get to go a whole year without any MRI’s or CT scans. I remember thinking that just seemed too good to believe…
• You are doing great with your physical therapy and making a lot of progress from where you were six months ago. We discussed with the doctors if you’d need additional support and right now we all agreed to wait and lets see how you do over the next six months as you continue to build strength. We don’t want to over support you because it’ll keep you from doing as much as you could. We talked about HKAFO’s and a dynamic stander. But right now we need to be patient and pray you get stronger. At physical therapy one day a few weeks ago we got to let you try a dynamic stander, unfortunately Arnold Palmer doesn’t allow me to take photos in physical therapy due to their policies…but boy do I wish I could share that moment…you amazed us all with how easily you learned to use it. I admit I pray you never have to need to use any additional support…but seeing you that day helped me realize that we’re going to do whatever we need to do to support you. You’re at the age that you want and need to be mobile and I fear if you don’t start walking soon that I’ll have a fiesty toddler on my hands anytime we’re in out knowing you just wish to be mobile just like any child. You’ve made a lot of progress this summer since you’ve begun swimming so we hope that continues to strengthen you. You will prove to us just how much you can do…and I’m learning to accept it will be on your terms, when you are ready.
• We met with the orthopedic doctor who said you’re looking great. Next clinic they’ll do another hip x-ray just to confirm your hips are still in place as they should be. With spina bifida it’s easy for them to become dislocated so we’ll keep monitoring them so that we can make sure you given the best care.
• We met with the urologist too. All your tests came back great. Because of spina bifida your nerves that control your bladder and bowel are likely damaged but it’s still too early to tell to what extent. Thus far you’re still peeing and pooping like a champ without the need for any intervention at all. Right now the only concern they have is that your bladder remains full every single time they’ve done an ultrasound, even during this last one when they had taken a urine sample just a short time prior. Because of this you’re at risk of a Urinary tract infection but thankfully you’ve never had one. Before your next clinic we’ll have you undergo several tests to check on the health of your bladder and kidneys in much more detail.

Of course no one promised us that this journey would be easy…I was just told it’d be worth it. I spent parts of this week nervous about you baby boy. Yesterday morning I spent the morning with you at Arnold Palmer Hospital again. Yes, the place we’ve managed to stay way from most of the year…we returned and were greeted warmly by this family of medical professionals who have cared for you. This week you have been a little congested and had a bit of a cough, I suspect from allergies and for the last few days you’ve gotten sick once each day and a few other things concerned me…like that soft spot of yours just didn’t feel so soft…and you’ve been a bit fussier at times…and the daze I saw in your eyes a time or two this week…it worried me. It brought back a rush of emotions that reminded me of last year when you went through so many surgeries. My momma instincts kicked in and I contacted your awesome doctor and she erred on the side of being safe and having you come in for an MRI. We’re praying that all this is just from the congestion, even the fact that your ventricles in your brain being a bit enlarged. They tapped your shunt and thankfully it’s not clogged, but it didnt’ seem to be flowing quite as well as we would expect. Though it’s possible that you could be going through this big growth spurt that may affect your shunt, we’re all still praying that that little bit of congestion goes away soon and that your shunt goes back to behaving itself. We’re so close to making it a whole year without a surgery. Needless to say I’ll be watching you closely all week. Thankfully you seem in great spirits and I haven’t had any reason to worry more…the most we can do now is to keep praying that all those angels looking over you are protecting your sweet soul. Surely God doesn’t give us any more than we can handle…and yes, I sure wished he didn’t trust you and I so darn much.

I suppose we should leave everyone with a little smile…with a moment captured last weekend. Never forget you are amazing son. I love you. Love…Momma

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.

We’re only hours away from celebrating a new year. I’m thankful that we’ve reached the end of 2011. The year has been a roller coaster full of ups and downs and I can’t help but be hopeful for beginning a new year. It seems each year brings it’s own blessings and challenges. This year has challenged me and my family in ways I never thought possible. And now as 2012 approaches I have thought long and hard about a lot of things and among the many commitments I have for the year ahead – I find myself gearing up to join “Team Spina Bifida”. In 2012 I vow to find it in myself to run a half-marathon in support of my baby boy and all those that have been affected by spina bifida.

Nearly a year ago I was contacted by a mother who has a son with spina bifida. A woman I never knew or met in my life wrote me while I was still pregnant and she said she was running her first marathon and that she was doing so in support of her son and so many others affected by spina bifida and that she would be thinking of me and my son and praying for us as she ran her first marathon. Back then I recall thinking of how inspirational it was for a complete stranger to reach out to me and to give me hope. I thought about it last year and recall thinking of the little I knew about spina bifida and I knew back then that Chance would be born with a birth defect that we all would have to endure for his entire life. With his life, much like a marathon…it’s not how fast we can reach the finish line…it’s that we can endure the challenges. Endurance is defined as “the ability or strength to continue or last, especially despite fatigue, stress, or other adverse conditions” and as I think of my baby boy I think of how much he has had to endure in just the first ten months of his life. He’s went through 11 surgeries. He’s spent more than a month of his life in the hospital. He’s now beginning to require physical therapy to help him with his mobility. His future is so promising…yet, I know it is uncertain what challenges he may have ahead. I am so optimistic but I realize our family must endure the challenges his spina bifida may bring to his life.

Yes, endurance. Most people who know me know that I am active but to be honest, I’ve always hated running. I was in the military for nearly six years and I swear they ran me to the ground. At times I was held to 18th airborne corp standards and was no where near the fastest runner. In fact, for a couple years I was the only female in a platoon and I suppose God never blessed me with endurance when it came to running because distance running was always what challenged me most in the military. I recall having a special forces platoon sergeant who use to run us 4 to 8 miles some days and it seemed so impossible in my mind…but every run I some how finished, definitely never the fastest, but I always finished. I could road march all day long in the military. I even walked 15 miles nearly 3 years ago for relay for life but I have never ran more than 8 miles. And it’s been 14+ years since I ran that far. Usually 2-3 miles is a reasonable goal for me…anything more is pure torture. Yes, I fear running long distances.

Yes, I am ending the year and ready to begin a new year and support my baby boy and all the others out there affected by spina bifida by running a half marathon this year…likely in Kentucky at the end of April. Call me crazy if you like…but I think about my baby boy and if he can endure so much just in his first year of life…I can endure running 13.1 miles along with the hundreds of miles I’ll likely run training for it. Perhaps along the way I might be able to once again do some good and help create some awareness for spina bifida. It’s so easy to want to give up on the things that you know will hurt…on the things you fear…over a year ago that “thing” was spina bifida. I was scared to death and wanted to give up. But I’m so glad I didn’t. And now it’s time to do something in support of my baby boy, even if it’s something that seems like torture to me….it’s time to do the things I once thought I never could do. I will not give up…just like I’ll never give up on my baby boy. In the near future I will share an update and let you all know ways you can help support me in this crazy little goal I have for 2012.

We LOVE you Chance…together we can endure anything…always remember “Love bears all things, Hopes all things, Endures all things. Love never fails.” (Corinthians 13: 7-8)

As my family has been through so much lately and we were finally beginning to feel a sense of relief that things had been settling down with my baby boy we received some really tough news earlier this week. My sweet niece Raven has been diagnosed with leukemia (Acute Lymphoblastic Leukemia). We are all still in disbelief and heartbroken.

Whether you know my family or have been following my photography you’ve likely seen her adorable face a time or two on my blog. It’s tough for me not to be a bit reflective this week thinking about Raven who is now going through so much to help her beat leukemia. I suppose reflecting on Raven’s presence in my life may help in not only accepting this news but in appreciating her sweet spirit that we’ve all come to love.

Raven was born in June 2009 with down syndrome. Much like this news of leukemia came as a surprise to us, down syndrome was something no one expected. Raven surprised us all by arriving six weeks early.  She was born with a little mohawk which has surely been one of the first signs that she’s a fighter.

Though she was such an itty bitty baby weighing just 4 pounds she sure did show us her strength early on having very minimal medical concerns.

Though the news was shocking to us all, as the dust began to settle, Erik & Amanda did a remarkable job of stepping up to caring for Raven.

This week as we learned of the diagnosis I think everyone in the family was not only shocked but found themselves reflecting that much more about just how much leukemia has already affected our family. Erik’s mother passed away of leukemia nearly 19 years ago when Erik was just nine years old. I know Erik, like Jason, wishes more than anything that his mother was here to celebrate watching so many moments he’s been able to share with Raven. He lost his mother to leukemia and now he’ll be doing everything he can to help his daughter beat it.

I’ve adored being around to see Erik and Amanda as their baby girl has grown so much in the last two and a half years.

Shortly after Raven was born I recall being unsure of if we’d ever have another child. In fact, I wasn’t so fond of the thoughts because I’m obviously one of the busiest people on the planet. The more I prolonged the thoughts I began to realize I wasn’t getting any younger and seeing Raven born with down syndrome only reminded me that the longer we waited the more likely we would encounter having a baby who would have special needs. The more time I spent with little Raven the more in love I was with this little girl. It didn’t matter if she had down syndrome…she was still such a precious baby girl.

As she grew quickly, I recall miscarrying and having such a challenging month and one day I was asked to help out watching Raven. Thankfully Raven brought me lots of smiles that day…as we had some fun being silly taking photos.

It won’t be long and I’m sure she’ll be running from my camera just like my own kids, but I still make it a point to photograph her as much as I can…because life is precious and now that she has leukemia I’m reminded that my obsession with photography is okay because now we have all these moments to look back on of all the memorable moments before we learned she had leukemia.

Last October when I was pregnant with Chance and just a couple days after we had received the diagnosis of Chance having spina bifida Erik & Raven stopped by to visit. It was a day I recall so well. I was so emotional and heartbroken to learn that what I rushed into in hopes of preventing anything bad happening to my child only lead me still to end up with a child with special needs. As I kept questioning “how” I’d cope with the challenges it was my sweet niece that reminded me that day that everything would be okay with my baby boy. From that day forward as I found myself so close to giving up on Chance I recall thinking about Raven and how there’s no way we could imagine life without our little Raven…she may not know it but in her own way reminded me to hold on to the hope for her cousin Chance. Oh, Raven, I sure do love your kissy face.

We all have felt so blessed that Raven  has had minimal medical challenges before learning she had leukemia. She just learned to walk earlier this year.

The more she’s grown the more we see bits and pieces of her adorable little personality.

Yes, Raven…baby girl you’re only two and you’ve already amazed us.

On Thanksgiving Jason’s grandmother and I took a trip to the hospital to visit Erik, Amanda & Raven. She’s already underwent a blood transfusion and a few rounds of chemotherapy. Though she was weaker than I’m use to seeing, she sure was in good spirits when we visited.

Leave it to Erik to help keep her spirits up.

Raven’s been in the hospital nearly a week now. It’s hard to believe how quickly things change in life.

The day I visited her she was in great spirits but grew weaker quickly. It breaks my heart to know how much she will have to go through to beat leukemia. But she’s strong and I have faith that she’ll beat this thing…but we all know it’s not going to be easy.

Thankfully she’s got Boots & Dora keeping her company in the hospital.

Though I know everyone is heartbroken about this news of Raven and we worry about Erik & Amanda and how they  must be feeling I also think so much about Jason’s grandmother. She lost Jason’s mother to leukemia and I’m sure hearing the word leukemia this week has brought back so many memories. Hopefully Grandma Bristow is reminded that little Raven has quite a few angels up there watching over her. Perhaps it’s their way of pulling us all together even closer. I know the road ahead will be tough, but I have faith that she’ll pull through and beat leukemia.

HOW YOU CAN HELP ME HELP RAVEN
For those of you who know me you know that I’m guilty of helping a lot of people. I have stepped up to volunteer to help so many non-profit organizations and families in need that it’s impossible for me to just sit here and do absolutely nothing. Aside from prayers for Raven perhaps you can help me. Here are a few things you can do:

• If you’re on facebook join Raven’s facebook page that has just been established. It’s a way to keep updated with how she’s doing.
• Visit Raven’s blog. Her mother Amanda (yes, we happen to have two Amanda Kern’s in the family!) has just started a blog and plans to keep people updated as she is able to.
• Visit Raven’s give forward page and donate to help her family. With Raven in the hospital going through so much Erik & Amanda are still unsure how this will affect them long term. They’ve already missed so much work and this is just the beginning of what is expected to take several years for her to beat. A donation page was established and funds donated will go directly to Erik & Amanda to help them with medical expenses and caring for Raven.

Yes, this seems a little surreal to me still. I swear my family has been through enough. I suppose it’s time to stop wishing for life to be perfect and instead to make the most of every moment we have. I can’t wish away the bad things that keep being thrown toward our family but I can help remind everyone just how important it is to embrace all these moments because every single moment we have with one another is precious.

I suppose if there’s any year I should write about being thankful it is this one. I have to admit it’s tough sometimes not to think of the long list of tough times that have happened to our family the last few years but those that know me know that the tough times only break me down for so long and in a way they almost strengthen me and now this year I suppose I find myself thinking more about how many things I’m quite appreciative for. Not to say I don’t think about this every year, but for some reason the thoughts are speaking a little more this year and felt it was worth sharing and perhaps in doing so it might not only touch some of you (especially those that I’m thankful for having in my life) but perhaps it might somehow inspire you and remind you to be thankful for even the littlest blessings in life. Hopefully it reminds you not to ever take the things you’re thankful for granted…so here goes my list that’s been running through my head so much this week:

• I’m thankful for my amazing family who lift my spirits daily and remind me that I’m loved.
• I’m thankful for my three babies who are growing so fast and remind me of the importance of making the most of every day.
• I’m thankful for my loving husband who has often been the one to hold us all together through the most challenging of times and has been there standing behind me so much through all my personal and professional goals. I adore him and am thankful for his love for our family.
• I’m thankful that Jaylen wakes me up lately early reminding me, “Momma it’s time to wake up…it’s a sunny day.”
• I’m thankful to have Chance beginning to babble. I adore when he cries “dadadada”. I’m thankful he’s eating solid food finally too. I’ll be much more thankful when he’s sleeping through the night…it shouldn’t be much longer till his nightly feedings are a memory of the past. Yes, I am thankful he wakes me up every night, often times several times a night, because he reminds me that I have a little one who needs my love and doesn’t allow me to forget the many years I wished for a little one.
• I’m thankful Chance’s shunt is working as it should.
• I’m thankful Hope is such a compassionate child who is thoughtful, caring, and likes to help others. I’m thankful she’s growing into an adorable big kid who now has so many dreams for her own future.
• I’m thankful for the 3 angels that aren’t physically with me…yes, somehow I feel blessed to have just as many little ones in heaven as I have here on earth because it’s their spirit and the many years of hoping and wishing for my children that reminds me every single day to appreciate the little ones who made it safely into my arms.
• I’m thankful for my parents who have helped us so much over the years and have continually reminded me to treat others as I wished to be treated. I can’t say I’ve always been able to do that but there aren’t many days that I don’t think of helping others more than myself.
• I’m thankful for all our family close and far away who have been out there listening and caring and saying so many prayers for our family.
• I’m thankful for all my friends…the ones who have helped me and our family so much, especially this last year. I’m also thankful for all the ones I don’t see or talk to as often and those who are separated by distance.
• I’m thankful for our spina bifida family. Last year I thought of spina bifida as something so terrible and I can’t say I think it’s the best thing in the world now, but thanks to it’s presence in my son’s life we are blessed with a community of families who have been amazingly supportive and often times this past year have been there for us as much and sometimes more than our family and friends.
• I’m thankful to have had an opportunity to meet so many amazing people who are living with spina bifida themselves this year. It’s helped me see just how diverse this birth defect is and helps inspire me and gives me hope for my baby boy.
• I’m thankful for all the doctors and medical personnel that have had to put up with caring for Chance and I in the last year. It’s a challenge I wouldn’t wish on anyone. It takes special people to put up with the extensive challenges we’ve been through and I say my thanks every day that they’ve helped get us through so many of our medical challenges.
• I’m thankful every single day we’re not in the hospital.
• I’m thankful that though I’ve had a lot of challenges this year it hasn’t prevented me from volunteering this year with Now I lay me down to sleep. As heartbreaking as those moments are when a family loses their little one it only reminds me to be thankful for my sweet family and makes me feel honored to be a special part of moments so touching and unforgettable in a family’s life.
• I’m thankful to be working as an educator and photographer doing day in and day out the things I love to do.
• I’m thankful for my colleagues at Valencia who have kept me motivated, inspired and offered me so much support over the years, especially this year. I couldn’t be more proud to work alongside people who not only support my professional goals but they truly care about me and my family.
• I’m thankful to be nearly halfway through with my tenure track work. I don’t care how many challenges I’ve been through…I’m convinced I’m going to do everything in my power to finish this work on time.
• I’m thankful for my students and would like to remind them that all too often then inspire me and teach me a little more about not only being an educator but about life.
• I’m thankful for all the amazing photographers and designers out there that continue to inspire me. You all give me something to look up to and strive me continually to improve. I especially thank those of you I’ve worked with more closely in the last year. I couldn’t be more appreciative of the collaborative creative experiences that have reminded me that your creative talent isn’t just about how great you are as a designer or photographer.
• I’m thankful to work as a creative and being able to pour my heart into my work.
• I’m thankful for the experience I have had at SCAD over the last few years, but more so I’m glad I’ve elected to halt my studies towards my masters. I can’t say it was an easy decision but it gives me more time to focus on my family and my professional goals. I think, or hope, it’s evident that in many cases the degree isn’t what defines a person or their talent. I just hope in time that I’m recognized far more for the amount of my heart goes into my work rather than whether or not I hold a masters degree.
• I’m thankful for all the newborns and families I’ve been blessed to meet and photograph this year. Each and everyone has inspired me and helped me improve as a photographer. I feel a tad bit special to be the person a handful of people this year have trusted in capturing such precious memories.
• And lastly, I’m thankful for all of you who are out there following along and supporting me, my family and the handful of things I keep myself busy with. It’s been a tough year, and every time I think we’ve been through the toughest times things seem to get more challenging but all those time I’ve looked up and have felt surrounded by so many people who truly care about me and my family…and for that…I am thankful and feel amazingly blessed.

I’m sure this little post may have helped me more than it might help you all…but hopefully it reminds you all to take a moment to appreciate the things in life you’re thankful for. Never take those things for granted. I promise lots more inspiring things in the days, weeks, and months ahead. I hope you all have a great Thanksgiving.

First, my baby boy is finally showing an interest in writing. I’ve tried several times this year but he’s always been disinterested in coloring or writing and if he’d join us it’d last all of a split second…until last night. He knows all his abc’s and 123′s and I know he can write them in the iPad – he’s addicted to that darn app. But it’s just not the same as writing with a pen on real paper…yes, what has technology done to our children, right!? We’ve been working on thank you cards and holiday cards this week so once we got a fancy new green pen that’s all it took for Jaylen to get interested in joining us. So many times we’d show him letters and he’d say “I can’t”. But the moment we’d leave him be he’d shout out in excitement everytime he’d write a letter on his own. Maybe, just maybe, with a little more practice he’ll write his own name in our holiday cards this year.

Jason’s and my schedule has been busier the last two weeks so in the brief moments between busy moments we’ve made the most of moments with the kids. Last night Jaylen wasn’t too interested in me taking his photo so at first it became a game…almost like laser tag. It was so darn hard to get my kids to sit still and after a while it turned into me chasing them around the house and before long we were playing hide-n-seek. Yes, another little game that turns into a great way to have some fun taking photos too. Jaylen always loved when it was my turn and he could find me…okay, it sure isn’t easy to find good hiding places when you’re all grown up. Somehow, I still managed to surprise him every time. He of course was able to sneak into every cabinet and small spot between furniture and was all giggles when I found him.

And surprisingly there was enough room for him in the laundry basket…how that is possible with three kids is a miracle!

Today is Hope’s official birthday. We had a little birthday party last week for the kids but I still wanted to take her out to help her have a special day. With it being her birthday a trip to the photobooth was one of the first idea’s that came to mind. I can’t say I’ve kept up with the tradition as well as I did the year Jaylen was born but it’s still lots of fun for the kids. Chance even enjoyed playing along. Luckily I made it through the mall this time without the mall cops harassing me or threatening to kick me out of the mall for taking photos.

I spent a lot of the day just remembering how ten years ago I had this sweet little girl. And now she’s such a big girl.

All year long she’s been waiting for this day…the day she’d reach double digits.

Ten years has passed so fast and I have such sweet memories with my baby girl. As I miss all the moments of her being so little I sure admire watching her grow into such an amazing little girl.

I suppose I should jot down a few memories of my baby girl…really to remind me of all the things I adore in her at this very moment.

• She’s been so anxious to grow up and make it double digits. Something tells me someday years from now she’ll miss the days when she was single digits…kind of like her Momma misses her being little.
• She still tells me when she grows up she wants to be a lot of things…a doctor, a neurosurgeon, a photographer, a teacher, an artist…the list goes on and on. As she continues to say she isn’t sure how she’ll decide I have to remind her that she can be anything she wants to be and that someday she’ll know what that is.
• She’s the best big sister ever. Really. Our home couldn’t function without her. We all rely on her daily. Her brothers adore her.
• She loves school and is performing highly in all of her courses. She’s in gifted reading this year and has been reading lots of big books beyond her grade level.
• She’s become quite the little pianist. She had her first recital recently and we couldn’t be more proud to see her continue to do well.
• Her friends are becoming a more important part of her life this year and as we watch her grow and have more fun we keep reminding her of the importance of family.

I took the kids out to the park this evening and we took a series of photos that I think you all will enjoy.

I know you all have been missing updates on my baby boy. Chance has been doing well. We’ve been out of the hospital nearly a month and half and we count our blessings every day that he’s home. Just last night we had a worrisome moment for the first time since we’ve been home as the area around his shunt was a bit more poofy and appeared a bit swollen. There were no other major symptoms and he’s been acting fine so we think he’ll be okay. We took him in to see his doctor today and she changed his shunt setting to help ensure it was draining as best as it could so now we just have to keep saying our prayers that the darn shunt keeps working because we have no desire to be back in the hospital.

It’s never easy to get all three of my kids in a photo together, looking at me and smiling. I swear my kids are often tougher to photograph than other families but I bribed them that we’d take a trip to play at the park and thankfully it worked for a split second…enough for me to take this photo.

Ten years. Okay, this officially makes me feel old…and blessed. I recall there were nearly three years before she was born that I just “hoped” for her to be born. Ten years ago my life sure did change the day this sweet little girl made me a mother for the first time. She’s taught me so much about life and each and every day I have her by my side she keeps me smiling.

Happy birthday baby girl.

This time last year my life was still amidst quite a bit of uncertainty, fear, and filled with overwhelming moments as we had come so close to giving up on my baby boy. It seems like many more days in the first few weeks after the diagnosis were filled with the fear of the unknown and the wish that I could give up or just wish away all the not so great things I had come to learn might happen to my baby boy. Yes, last year so many of the things that I feared might happen…did end up happening in the last 8 months. Today marks the one year mark of meeting with Chance’s neurosurgeon who not only helped us see the optimism in our son’s life but surrounded us with the care and support to help us remain hopeful.

I still recall the day like it was yesterday…it’s tough to forget such an emotional day where tears fell with virtually every thought and word I wrote. A year ago I recall writing about the power of prayer as thousands of people prayed for the many people affected by spina bifida. That day one of the mother’s specifically started the prayer day knowing how close we came to giving up. Giving up is something that I’ve since learned over 60% of families do when they learn their baby has spina bifida. I’ve been there. I know how helpless of a feeling it is to learn your baby has spina bifida. There definitely have been many days since Chance was born that I’ve still felt overwhelmed with the challenges spina bifida has brought our family and what I’d give to wish it away…but I can’t. A year ago we knew we’d choose life…thank goodness we did because even with all the challenges…I’d be lost without Chance here with us now.

Recently I’ve had a lot of people thanking me for my efforts in helping create awareness of spina bifida, specifically with all the photography I’ve been doing…not just of Chance…but of many others with spina bifida. It’s been a life changing experience to say the least. I have to admit that last year in the months that followed the diagnosis I was still quite scared to connect in person with families who were affected directly by spina bifida. It’s not that I was scared of the kids with spina bifida but that I was scared to accept what I knew my child would be challenged with. All the optimism in the world would never take away the fact that he had spina bifida or that he’d likely need extensive medical care. In the last few months I’ve found the courage to reach out to other families with a hope to not only connect and get to know them but to help raise awareness of spina bifida through my photography. In addition to it being spina bifida awareness month we also have the walk-n-roll for spina bifida event coming up on October 29th so I’m quite excited to share the final awareness campaign I’ve created. A huge thanks to all the families who helped me out in making this campaign of imagery happen. Spending time with each family helped me recognize just how unique each child is and regardless of whatever challenges they face they are all still amazing…every single one.

aiden aiden2 andrew angelina chance-beach chance-bowl chance-me chance-profile courtney dominick dominick2 gabriel gabriel2 gabriel3 gabriel4 jaylah jaylah2 jordan joshua kaitlin laura laura2 mason mason2 natalia nicholas nicholas2 nicholas3 nicole nicole2 pat patricia patricia2 10202011-chance 10202011-chance3-bw 10202011-chance4-bw 10202011-chance5 10202011-hope3 10202011-hope8 10202011-jaylen 10202011-jaylen2 10202011-jaylen3 10202011-jaylen5 10202011-me2-bw

The kids and I paused this evening to take some photos. It’s been a reflective day for me which usually makes for a good photo day. A year ago I didn’t quite realize how my baby boy would become such a sweet big boy…thankfully he still loves me just as much even with Chance here.

I really hoped to take a photo of all three of the kids together. Chance wasn’t too interested in the idea…neither were the other kids. By the time Chance settled down they preferred to run around and play…and I decided moments like this were just as memorable.

Jason’s been away at training this week and we’ve been missing him. It seems all my babies have been a bit more moody at times. Thankfully Hope has been a huge help. Chance is still very clingy these days. He’s refusing to eat solid food and has allowed his gag reflex to kick. Yes, this face was really because he was a hungry little booger.

Now that Jaylen is four he’s been incredibly cute. He’s starting to try to “cheese” for the camera…I can tell I’m on the verge of losing his spontaneous real smiles in photos. I still adore how he squishes his nose up now when he smiles for photos. He’s looking so much like his daddy these days.

The kids had fun acting goofy outside tonight. The are hilarious these days. If I could just get them to stop antagonizing one another the other half of the day we’d be doing well. Today we went out to begin plotting their birthday party in a few weeks…they’re rather excited about it.

After Chance had some time to eat I brought him back out for photos. Hope has been so helpful in getting him to sit and smile for photos. She totally adores him…she said today, “He’s about 5% cuter than me.” She’s such a great big sister but I can tell she misses the days when she was the only baby in the house. Tonight she said, “it’s no fair…there’s only one of you and three of us.” I sure don’t know how I’d make it without my baby girl…she’s the best helper with her baby brother.

A year ago I knew we’d not give up on my baby boy. I knew we’d be stuck with spina bifida for life. I remained optimistic but knew challenges were likely. I knew I’d be in love with this little guy…but I don’t think I realized just how amazing he’d be.

A year ago I recall saying I knew there was a purpose for all this happening and though I may not completely get it I know this sweet little boy was brought to me for a reason. I’ve been reminded of this by a handful of people this year and it makes it no easier to accept. Yes, Chance…so many people are thanking you for having spina bifida…as sad as that sounds…they know that having you endure all the challenges of spina bifida means I will pour my heart into helping you and the many others who are enduring spina bifida. We may not be able to cure it but perhaps somehow together we’ll help many others see that your life was worth it. Perhaps together we can make others more aware. Perhaps somehow we can help others see the hope. You are amazing and I will never give up on you.

Now hopefully you all will pause to pray…on October 24th, 2012 join us all in praying for all those affected by spina bifida.

And…if you haven’t heard…Chance’s team is no longer in the lead in fundraising for the walk-n-roll…perhaps you all can pitch-in to donate a little bit to help the cause.