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.

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.

Hopefully those of you reading my blog often aren’t in withdrawals. It’s been just over a week and we’ve managed to stay out of the hospital. Yes, it’s reason to celebrate that a lack of updates is a sign that Chance is doing well. We’ve been spending time at home together. It’s kind of funny how being stuck in a hospital for so long can cause you to celebrate some of the simplest of moments.

This past week marked the trifecta of moments for our family as our 14th anniversary, Jaylen’s 4th birthday, and my birthday passed three days in a row. It was tough for us to hold any big celebrations between just rebounding from the hospital and juggling our crazy work schedules. We’ll likely have a party for Hope & Jaylen together soon seeing how their birthdays fall so close together. Thankfully this sweet little boy of mine isn’t so obsessed with the thoughts of his birthday or parties so instead his special day we spent with just him and helping remind him just how loved he is. This was taken the night before his birthday when we talked about his birthday and asking him how old he’d be. It seems like I’ve blinked and my baby boy is now four. I’m still not so sure how that happened so fast.

The kid’s birthdays are always that milestone that make me pause and reflect on how much they’ve grown. I suppose I’ve been pausing all week knowing I’d write on my blog this week with sweet thoughts about my baby boy, like how:

• He’s the best big brother ever. No, really, he is. He runs to help Chance anytime he cries. He’ll lay next to him trying to “shhhh” him to sleep. He’ll pat his back. He’ll sit and sing patty cake or show off his toys to make his little brother smile.
• He’s the best little brother too. He adores his big sister. When she’s at school or playing with friends he tells us how much he misses her.
• I am totally in love with every time he tells us all that he “lubs” us.
• He’s still reserved in how much he cares to talk, but he’s begun to say much more of what is on his mind these days. I use to be worried about how little he talked…now I’m convinced that he’s just smart enough not to share all this thoughts out loud.
• He still loves to talk in color. You know…saying he wants to go to “red” is target. “red & yellow” is McDonald’s. “red & white” is chick-fil-a. “green” is publix. “green & yellow” is Olive garden. In the last month or so he’s finally started to say some of the names of these places but I’m still fascinated by how he identifies places by color.
• His smile makes my heart melt.
• He would eat ego cinnamon toast waffles every day for every single meal if I let him. And he’d have chocolate milk just as often.
• He’s my gadget kid. He can work my iphone and ipad better than I probably can.
• He’s convinced he’s a superhero. Batman and spiderman are his favorite these days. But really every single superhero he loves. Of course he’s my kid…so being a superhero kind of goes along with being in our family.
• His favorite toy these days are squinkies. He’s obsessed with them, especially the superhero ones. They’re the type of toys that are so small that they get lost easily. I’ve lost track of how many times he’s been devastated after he’s lost his spiderman squinky.

On his birthday I elected not to obsessively take photos of him. Yes, I know…sounds odd, right. By the end of the day I realized I had yet to take his photo and asked him if I could take just one photo and he said yes. He sure knows how to make my day!

Happy 4th birthday baby boy…

A lot of you have been asking me how Chance has been doing since we got home. Thus far he seems to be doing well with his new shunt. It’s inevitable though…I am paranoid. Watching him go through 6 of his 11 surgeries in just over 2 months time leaves me quite nervous. He’s been far more clingy this past week and preferring to be held or cuddling most times. So any time I am able to sit him down and he’s content I am appreciative of.

Being out of the hospital for a week has left me admiring some of the simplest of moments. Like the boys playing superheroes on the iPad.

Aside from facebook going off a couple hundred times with so many sweet birthday wishes the day was rather uneventful. The best sentiment received was given by my baby girl in this little card she had made for me before she left for school. Little does she know it’s the most perfect and special gift I received.

At times this week I began to feel like being home was almost more challenging than being in the hospital. Chance was super fussy and clingy at times and here I began to wonder if he was on the verge of shunt problems, teething, or perhaps…maybe, just maybe…this kid was just too couped up and anxious to get out of the house. Of course…that was it. The few times we went out for brief moments he cheered right up. Saturday we elected to take him to our niece Raven’s special day at the Down Synrome walk in Orlando. He was quite excited to venture out.

We spent a little time yesterday morning spending time with Raven at the walk. We hesitated in the decision to go because Chance has only been out of the hospital a week and his head still has a ways to go before it heals more so we know he’s at a higher risk for infection. I’m sure we’ll have his doctors shaking their heads at us for taking him out but given how well he’s been doing we decided to take a “chance” and support our sweet niece for a brief period of time. When his doctor sees this photo of him and his Uncle Erik hopefully she knows that Chance must have been trying to tell us that he was worried she might not approve of him being out.

Raven turned two this summer and now has such a sweet personality. Here she was in one of my new favorite photos of her as she celebrated at the walk while riding on her daddy’s shoulders. I sure love that smile!

Now I promise, I’ve been trying to take more photos of Hope & Jaylen but they really prefer to have little to do with my camera lately. After the walk yesterday I made an attempt to photograph Hope and it totally captured her mood lately. My baby girl has been so worried about Chance this year. She’s also at the age where she wants to spend every moment with her friends and having fun so she’s sure to be opinionated when she doesn’t get her way. I’m not so sure how much telling her I love her or thanking her for being such a great big sister & daughter will mean in the years ahead but I’ll keep telling her…and pray she never forgets just how incredibly special she is.

The past week Jason and I have resumed our schedules and things certainly so no signs of slowing down. But that’s okay…any and every day that we’re out of the hospital with our baby boy is a reason to celebrate.

I promise there have been many more busy moments beyond what you’ve read & seen in this post. I can’t wait to share all the walk-n-roll stuff I’ve been working on…I promise you’ll hear more about all that soon enough.

I’m finally finding the energy to post an update since Chance’s 11th surgery. The last week and a half has been beyond draining. We’re still in the hospital as I share this update but we just received word from the doctor that we’ll be discharged today.

Chance’s 11th surgery went well. Thursday was a challenging day. It was one we looked forward to so we could move on. Yet it was also one we were fearful of given how many issues we’ve had with shunts. But Chance that morning started the day in a pretty good mood…sure seems like he’s saying “let’s do this”.

It took more work to distract him and keep him occupied as we waited for his surgery time.

From 4am on that day I couldn’t feed him and by around 10am they clamped his EVD that was draining the fluid in his head. Within an hour of clamping his EVD he became irritable.

Here Chance is in some of the final moments before we left his room and headed up to the post-op area.

I recall feeling a bit more nervous as the time came closer to his surgery and admiring the light shining down on him. Everyone keeps telling us to pray “this is it” and that he won’t require any additional surgeries. I’m not so sure how many more prayers God needs because I know we have so many others also praying for my baby boy. As we all look upward I suppose I should remind myself to keep praying and find it in myself to trust and not doubt what is planned for my baby boy.

Jason arrived just before we headed up to the post-op area. It made Chance’s day to see his daddy. Our family has been divided as he’s been caring for the kids and resuming work so I admire these moments that much more when they happen.

Yes, Chance has lots of people praying for him. Even all his doctors. This is my child so of course he hasn’t taken the simple route to life or recovering. He likes to keep his doctors on their toes and with as much as they have touched our lives we know Chance has somehow managed to steal a piece of their hearts too.

Here Chance was resting just before his 11th surgery. Eleven surgeries later and it never gets easier letting go of my baby boy when they take him off to surgery.

After surgery he was so tired. Aside from feedings he slept virtually all evening and the remainder of the night.

Even majority of yesterday he rested. Given all he had been through the doctor wanted him to stay an additional day just to keep an eye on him.

The back of my baby boy’s head looks awful. He now has six scars, four of which are still new wounds. I took this photo at first without the intent of sharing it and then I got to thinking…I’m going to have to take my baby boy out and about before long and it’s going to be inevitable…people will see his head. Just a couple of weeks before this round of surgeries I had gotten questions from people curious of what happened to his head. I can only imagine how many questions that might come now. I have this feeling that once they heal good he’ll be wearing hats this winter until his little head heals more and his hair grows.

Yesterday was the first time in a week and a half that Chance went wireless. For the last week and a half he’s had all his wires, including the EVD connected which confined him to being within a foot or two of his hospital crib. It’s a liberating feeling being able to roam around without those darn wires…so we celebrated by taking a photo.

Thank you all again for the continued prayers & support as we’ve spent all this time in the hospital watching our baby boy go through so much. I promise the next update will be from home…and that should make us all smile!

It seems like I’ve blinked and my baby boy has grown so much…he’s just over six months old and boy is he growing a lot lately. He’s definitely the most “social” of my kids at his age. He wakes up babbling up a storm. Forget coo’ing…this kid now squeals and talks all sorts of baby talk. He smiles and giggles and is one happy little fellow. This past weekend I caught him hanging out in his bumbo. He’s such a big boy now that he prefers to sit in his bumbo most days rather than his bouncer seat. Often times he’ll sit while the kids play or watch tv. It’s not uncommon to find him having fun too…just like this…

Yes, things are beginning to get to be “fun” for this little guy…I don’t need to say it…we already know he’s awesome. Something tells me he may know it already too.

I swear it was just yesterday that Chance was born. While he was still in the NICU shortly after I came home from the hospital without my baby boy I recall receiving an adorable unique toy as a gift from one of the most supportive and compassionate professors I’ve encountered at SCAD. Yes, the type of professor that has continued to nudge me the last two years not to give up despite how many challenges I’ve faced. I recall back then arriving home from the hospital after visiting Chance a tad bit sad to not have him home yet but uplifted by such a sweet gift. I knew back then that it might be a while before he got to play with it…but I just knew it’d be quite memorable when that moment finally came around. This little toy is definitely his favorite. I suppose it’s a special reminder of the challenging journey of the last two years…and the blessings that have come with the journey.

Hope continues to be an awesome big sister. She’s claimed Chance as her “baby”. I just adore seeing their time bonding.

Hope has been a huge help with Chance. She’s been known to help out with him often as I am working or taking care of things around the house.

Though I know she is head over heals in love with him…it’s pretty obvious that Chance loves his big sister too. He’s so attentive with her and is known to let out big laughs and squeals often when he’s getting attention from his big sister.

Hope is found singing and talking to him a lot these days. Chance absolutely loves it.

This past weekend also marked another milestone for my baby boy. I’m no longer the sole source of Chance’s nutrition…he’s officially begun the journey to eating solid food. I can’t say my babies have worn bibs for long as babies…perhaps because I’m a little OCD with keeping them tidy…or maybe because I really don’t want more laundry to do. But when they first begin eating solid foods they do wear bibs so running into this one at target before he was ever born was the perfect first bib for him to wear considering how much I’ve blogged about him since the moment we learned I was expecting him.

Before we fed him cereal for the first time I allowed him to play with his spoon. This little guy is quite coordinated with his hands for his age.

It was fun just watching him learn to hold his spoon. I don’t think he quite understood what we were about to torment him with. And yes, check out “the look”…six months old and I’m already getting the “please get that camera out of my face” look.

Before long he’ll be feeding himself…

…and likely helping eat us out of house and home…yes, I’m sure someday I’ll miss seeing these pudgy little baby fingers fiddling with his baby spoon.

When Hope & Jaylen were babies I recall how exhausting breastfeeding was and I was eager to begin feeding them solid food by the time they were four months old. With Chance I have been in no rush. I know for the first six months nursing is more than enough for a baby and to be honest I’ve feared having his spina bifida influence things like constipation the moment I put him on solid foods. But lets face it I can’t (and don’t want to) nurse him for the rest of his life. He’s got one year and so it’s time now to begin getting him ready to eat like a big boy…okay a bigger baby. He seemed quite interested in eating cereal. Hope has been waiting for a while to finally get to feed him so I let her feed him for the first time.

He turned his nose up a bit…he definitely noticed a difference eating cereal. But he did quite well…

This kid just cracks me up. The transition thus far seems to be no big deal to him at all. It doesn’t take much to keep him happy…food certainly helps.

So there you have it…my baby boy is once again growing fast before my very eyes. Before we know it he’ll be slinging food all over the place and feeding the dog his extra cheerios. Yes…now the fun begins…

The break between semesters has certainly flown by this year. I suppose it seems like a big chunk of it was filled in the hospital or doctor’s offices. I’ve always enjoyed returning to Valencia every fall…the renewed energy that fills the campus the week prior to classes starts is quite uplifting.

Yesterday we had our annual welcome back to campus. It’s an opportunity to reunite with colleagues, attend meetings, and begin getting caught up for the fall semester. If you’ve followed me in facebook, twitter or instagram you likely saw a peek at a few memorable moments yesterday.

I was reminded yesterday that a meeting isn’t a meeting if it doesn’t include notes from my colleague Kristy Pennino…which always give reason for us to smile. In between meetings we took a trip past the art gallery on east campus and fell in love with the upcoming exhibition, Graphic by Design. Several local graphic designers with amazing talent have their work on display. Us design obsessed professors agreed it’s by far one of the best shows we’ve seen on display at Valencia. I was quite inspired by the quote, “give me your faith. let me show you my strength” found in Bryan Kriekard’s work on display. It seems quite fitting for me after this past year. The design work is on display now and the opening reception is September 9th from 630-830pm at the Anita S. Wooten gallery so be sure to check it out if you have an opportunity to stop by. In addition to preparing for the upcoming fall semester my mind is equally consumed with my return to course work at SCAD. If all goes as planned I should return this fall. It won’t be long and I’ll be working on my thesis proposal. Thanks to Kristy I have been immersed in the book do good design by David Berman which I’ve found quite inspiring for some of the potential topics for my thesis proposal. In just a day I’ve made my way halfway through the book and would definitely recommend it to any graphic designer.

This morning marks the annual Academic Assembly at Valencia where all full-time faculty and staff gather to be inspired and updated. President Shugart always spends the morning with us giving us a thorough update on the college’s mission and what’s ahead for us all each year. Every year, even amidst tough economic times, he greets us filled with hopeful and inspiring thoughts. One of the most memorable moments of the morning was at the end of the Academic Assembly when President Shugart introduced us to Valencia’s future students…a group of elementary school students performing on stage for our faculty. It was a precious sight to see young children on stage,  nearly the same age as my daughter Hope, singing and performing. I’m a little guilty of doodling during longer meetings and I found myself doing that at the Academic Assembly. Many great thoughts were shared with us this morning…I managed to jot down a handful that I’m sure I’ll remember for quite some time.

One of the exciting new things that has come this fall is Valencia’s new news site dubbed “The Grove”. It gives everyone at Valencia an opportunity to participate in sharing news to update us on the great things going on at the college. You can subscribe to it by RSS or for us faculty & staff the “news” is being emailed each Tuesday…sort of like a “newspaper”.

I finally finished another crazy to do list. If you ever want to know what’s in my mind I suppose you can just check out a mindmap. I finally finished doodling this thing yesterday as I was preparing for the fall semester. Next week I’ll great five new classes full of students…of course many other things will be keeping me busy along the way. But busy is good…I wouldn’t have it any other way. I’m glad the break is behind me…it has definitely been one of the more challenging “breaks” (if you really want to call it that)…so thank goodness busy times are ahead.

Out of all the things I’ve learned the last few years it’s that life is a whole lot better when you take “chances”. I think it’s obvious now that Chance is here with us how much he alone has changed our lives but looking back at so many things beyond Chance’s presence…everything from my teaching career, to photography, to all the non-profit work I’ve done…some of the best things have come at times when I’ve driven forward, despite obstacles that were in the way. This evening’s photos with Mason once again reminded of the importance of taking chances. I expressed an interest to Mason’s mother after his photos last week to photograph him outdoors in a bowl. Photos of newborns outdoors are a tad bit more challenging as you have to worry about the weather…which in Florida this time of year means rain. Mary & I agreed to meet at a local park, despite the thunderstorms that do arise several times a week this time of year. Usually this time of year it rains a bit most days but the rain typically doesn’t last the entire night. We arrived and it was raining so we hung out for a bit and tended to Mason’s needs. At 3 1/2 weeks he has become more alert. We passed a bit of time as we hoped for him to fall asleep. I took photos admiring Mary & her new baby boy.

If you’ve been following my blog you may recall that Mason was born with spina bifida just like my son Chance. Mason’s back is still healing but he’s doing so well. I remember those days so well…just wishing and waiting for Chance’s back to heal. I know it’s only a matter of time and those worries will be behind Mary and Mason. I’m still so surprised at how little most people know about spina bifida. So many times I have had people who thought that merely closing a baby’s back is a “cure” for spina bifida. Unfortunately it’s not a cure but it’s one less thing to worry about. The mark on Mason’s back will be a constant reminder of the beginnings of his journey with spina bifida. It’s a beautiful reminder of the blessings he’s brought despite the challenges he’s been faced with.

Mason showed no signs of falling into a deep sleep so we moved forward and began posing him in a bowl in hopes that he’d find a comfy spot so I could take his photo. I’m one of the most patient people, especially with newborns but as we began I could sense the rain coming back so I had to work fast. Mary was a huge help and once again sang a sweet lullaby to Mason to help keep him calm.

After a few minutes it worked…he wasn’t sleeping but was content. I didn’t have time to spare as the weather was beginning to look worse. The entire time I recall talking to Mason telling him if he cooperated he’d be my new best friend. Yes, I really do talk to the babies most times…and most times they listen.

Mason was pretty amazing to me. All the waiting and putting up with the rainy moments were worth it. I owe Mary a huge thanks…outdoor shots are often a tad bit more challenging so it helps to have awesome parents helping me. Thanks to her helping hand and patience this sweet photo of her baby boy was possible.

After I was done I joked that the nearly six years I spent in the military has finally been put to good use…between spending time posing him and laying on the ground to get the shots of Mason in the bowl I arose wet and full of dirt…but it was so worth it for this little friend. We celebrated for a moment afterwards and I told him how absolutely awesome he was.