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.

The summer has flashed before my eyes…again. Not so sure how that happened…seems like every year it flies by even faster. Here I am nearing the end of my break between semesters and with Hope starting back at school…still in a bit of shock that the summer is nearing an end. This week is when things are about to pick up…not that I haven’t been busy most of this year…but the fall will bring quite a few more busy moments. I think most people know I thrive in busy times…now I just have to get ready to hit the ground running and pray I find and maintain the “umph” to keep pushing forward with some big things ahead…and really just pray the medical moments settle down.

Last Friday we went to “meet the teacher”. Hope arrived at school to check out her class list and for the first time in a long time she knew barely anyone in her class.

For the first time in two years Hope is going into a class with a new teacher. We’re going to miss Mrs. Myers who has taught her the last two years…though I thinks he already knows she (and her other teachers) are stuck with us for life. Hope’s new teacher seems really nice and enthusiastic about teaching my fourth grader. Yes, she’s going into the fourth grade! *sigh* She was so enthusiastic that Hope left school that day saying she thought her teacher took a five hour energy before meet the teacher…yes, I love my girl for noticing just how excited her teacher was.

Since my surgery I haven’t carried Chance quite as much in the bjorn…so we pushed him in his stroller during meet the teacher. He such an awesome baby boy…just chillin’ while we walked around saying hi to Hope’s new teacher and all her previous ones. Several years from now I know I am going to look back and miss him being this little on his first time joining us for meet the teacher.

Jaylen told us while we were in Hope’s class that he wanted to go home. Part of me was wondering if he knew his big sister was about to go back to school and that he’d have to be home with out her. He and Hope have spent so much time together this summer and the last six months since Chance was born they really have built an amazing bond. At times they’ve come to antagonize one another like most siblings but this little guy truly looks up to his big sister. Yes, I know…it won’t be long and he’ll be in school too…I won’t rush that thought…I’m definitely NOT ready for that moment.

We rushed around to all her other teachers to say hello. It was evident she was having a lot of fun and excited to be going back to school. I paused for a moment and told her we needed to take a picture…okay, I’m pretty sure we were still walking as we took this one.

Hope & her awesome teachers…kindergarten through third grade…yep, they’re keepers. It’s so awesome to see how much Hope’s face lights up when she sees them…and equally as awesome to see how excited they are to see her. Every year the transition to a new class is definitely not what we look forward because we sure do miss having her former teachers teaching her. I suppose this year it’s a tad bit tougher because she had been in the same class for 2nd & 3rd grade. Thankfully they let us come back and visit every year.

We left school hearing the best news that came as a bit of a surprise. One of Hope’s good friends since first grade has returned to her school and just happens to be in her class. It totally made her day.

Every year on the first day of school I take a photo of Hope and her brother…well, now brothers. When she started school it was just her…now she’s an amazing big sister to her two little brothers.

Yes, time is flying a little too fast…and she’s growing up before my eyes.

PINK HIGHLIGHTS
Friday afternoon after meet the teacher I did something a little crazy….I took Hope to let her get pink hair extensions put in. Yes, I did. Call me crazy…or perhaps “cool”. I made sure it was okay with her school. Rather than highlights we elected to let her have pink extensions because they could be removed more easily than dying her hair back blonde afterwards. She’s been begging for them forever and I admit I tried to avoid getting them but I came to realize it really won’t hurt her. I am a creative…and totally supportive of individuality…within reason. She’s been such an amazing kid that I figured it was worth letting her do something fun that would help boost her self esteem.

I allowed her to get three put in and let her choose where they’d go. Whenever she gets tired of them or wants them out they can easily be removed.

MY BABY BOY
As Hope returned to school I was a little curious to see how Jaylen would react after they enjoyed their summer together. We returned home and he went right to playing contently like her being back in school didn’t bother him at all. I was a little shocked because often times when there are big changes he reacts emotionally. But he’s an awesome kid and most of the morning he spent playing with his super hero squinky toys (or as he says soup hero quinkeys). I asked if we could take a few photos…I knew I wouldn’t want to forget just how amazing he was today. He showed off these squinky toys that he’s suddenly become obsessed with.

Yes, something so simple and tiny keeps him occupied for hours. He flies his “soup heroes” around the house or in some other play toys he has. He’ll pretend they’re fighting and all. They are so small that he drops them or they get lost  somehow quite easily. These are the only ones he could find today. Today Captain America was his favorite…but really only because he couldn’t find spiderman.

Yes, he loves these things. I was just glad my baby boy spent the day playing with these rather than missing his big sister too much.

SPINA BIFIDA ICE CREAM SOCIAL
Yesterday we spent a bit of time with other families affected by spina bifida at the spina bifida association of central florida’s back to school Ice Cream social. The kids had a lot of fun – they got to add their hand prints to the banner for the upcoming walk-n-roll event.

We even got to let Chance put his foot prints on the banner. He doesn’t know it yet but he’s helping make a huge impact in the walk-n-roll event this year….so it’s only fitting that  we leave his mark on the banner. Thanks to Jason taking my camera from me we have a few photos of these moments.

I made sure to have Chance’s other spina bifida baby friends add their foot prints to the sign too. A quick photo of the boys and their awesome Momma’s. It’s been a challenging year and it sure has helped to have other families like theirs there to show their support and reassurance every time spina bifida has decided to hit us hard. You ladies rock…and so do your baby boys.

A huge thanks goes out to Nicole Gower who helped make the social happen. You rock lady…well, then again…this is my competition…you know Nicole is leading “Team Gower Power”. I knew they were closing in on Team Chance…but I just learned they’re officially in the lead now…by $10. Nicole give it a little time and my supporters will help us take the lead again. {We’d love to see you all donate to Team Chance…we’re still in need of donations for the walk-n-roll event}  And really I can pretend to be competitive in the spirit of helping the cause….but Nicole knows I adore her and I sure loved her helping me with Chance for a moment at the social so I could play paparazzi. We definitely owe her a huge thanks for how much effort she’s putting into the walk-n-roll event coming up and all she’s been doing for the spina bifida association.

A COUPLE MORE OF JAYLEN
So I had this brilliant idea today…after being super busy all day it hit me that my baby boy was six months old. I had intended on taking the kids to a park and taking Chance’s six month pictures and some of the kids. Then the thunder came rolling in – so I decided not to stray too far from home for these photos. I asked Jaylen to come outside with me and we tested a sweet spot near the conservation area behind us…it wasn’t quite what I envisioned but close enough. I dusted off my 50mm lens in hopes of some sweet bokeh..and now I have two more awesome shots of Jaylen that make me realize he’s growing so fast.

SIX MONTHS
I can’t believe my baby boy is six months old. It’s still a shock that that much time has passed. It’s been a tough six months but I love this kid…he so awesome…and well, these photos certainly should make you all smile. Considering how much he’s endured it’s uplifting to see his sweet spirit shining through these photos taken today. Once again Hope was a huge help making sure he sat properly and didn’t fall while I took the photos of Chance again in his wooden bowl. I totally love naked babies in wooden bowls. And yes, he seriously loves his big sister.

I got so many cute shots but he hadn’t quite smiled so I poked my head up from behind my camera and said “hi baby boy” and he laughed.

I keep wondering as I take his photos “does this kid get any cuter?”  ….yes, he does. Happy 6 month birthday little man…may the next six months be as much of a blessing as the last. Now lets continue to pray that the next six months are filled with far more smiles and laughter than tears, fears and moments in the hospital.

I know many of you have been waiting most of the day for an update since I brought Chance to the E.R. It’s been a crazy day and I’m finally finding a moment to share just how hectic the last day or so has been.

This past week Hope & Jaylen decided they’d like to join in the fun of visiting the doctor. Both presented symptoms of allergies/cold…at first it started with Hope who had been coughing for a few days. My kids are so much like me with having allergies that we hoped it’d pass. By Monday she some how had an upper respiratory infection and was put on an nebulizer. Jaylen began coughing the very next day. By Wednesday he sounded worse so I took him in and he had an ear infection and was congested. Two doctors visits and lots more prescriptions later and the kids are finally on the mend and feeling much better. Fast forward to Friday and Chance started coughing and sounding a bit congested. After having three kids the symptoms of allergies or colds don’t worry me much…I just knew to keep an eye on it and do the things I’m use to and prayed we’d be spared going back to the doctor again. As the day progressed his congestion and cough sounded a bit worse. After he woke up from a nap later in the afternoon he had a low grade fever and his soft spot seemed a tad bit more full. Jason and I felt his shunt too and for the first time with this new shunt it felt a bit more squishy like it was beginning to swell. I began to get nervous and feared something might have been going on with his shunt. I sent a picture and update to his neurosurgeon and she decided to put him on antiobiotics to be safe because the incision looked a bit red for the first time since it was put in. It was also suggested to begin to clean his incisions with betadine twice a day. I went about the rest of the evening thinking…no biggie…just antibiotics, keeping it super clean, and we’ll keep an eye on it and it’s going to be fine.

Later last night I went to check on Chance and my heart sunk the moment I saw his little head with a very swollen shunt. I sent a photo to his neurosurgeon and she agreed it was concerning. Aside from being a bit irritable (likely from being congested too) he was presenting none of the other symptoms of a shunt malfunction. The big concern was that we didn’t want the swelling to cause the incision to open up. We agreed to try to wait until the morning to bring him in to the E.R. for more tests.

Chance is becoming a frequent flyer at Arnold Palmer. Some of the people working remembered him the moment we walked in. He looked like such a big boy waiting to be seen by the doctors.

The last day has been tough…he’s been pretty fussy a lot more unless he’s eating or sleeping.

I’m pretty sure the little stinker is teething too. These days everything gets gnawed on. Don’t be surprised if we see his first tooth before long.

While we were at the E.R. Chance underwent an CT scan of his head. The important thing was to ensure his shunt was taking care of his hydrocephalus that he developed due to his spina bifida. As much as we hate his shunt…we love it too because it’s what’s keeping our baby boy functioning. Good news is that the scan showed that his shunt was working…it’s draining the excess fluid from his brain like it should. They shared two photos of the scan with me. The one on the left is from just before his last shunt revision – you’ll see the black areas which essentially are the enlarged ventricles showing fluid on the brain. The image on the right was taken this morning and I was told it’s a great sign that the shunt is working.

So the question is…why is his shunt site swelling? I was told that congestion can cause the pressures in the head to change and I’m sure all the coughing isn’t helping. A shunt is a man made devise inserted into my baby boy’s head…it’s not meant to be there…but it has to be there for him to live and function with hydrocephalus. I’m sure if this shunt stays in long enough it may someday be a bit more fused into his head but right now it’s fairly new so it is possible for some fluid to leak out of the area where the catheter is inserted into his skull which in turn causes the swelling. Yes, the parent in me freaks out seeing it…but I get it. I won’t say it calms my nerves any but knowing this certainly helps me every time I see his shunt swollen. So now we wait and see. As his shunt swells we’ll keep an eye on it and ensure there’s no external leaking or that no other shunt malfunction symptoms arise.

Once we finally got the word that we’d be discharged they gave me the green light that he could be fed again…it certainly helped him feel better. Shortly after he was in a much better mood. I of course spent time waiting by taking pictures. I’m sure some people may think I’m crazy for taking so many photos of my little man in the hospital…but it really is like therapy for me. And well…I suppose it helps tell this little story I’ve been writing for quite some time now.

You can thank the 365 photo project I did in 2009 for this shot. I don’t quite take a picture a day like I did back then…but back then that little project forced me to look for the moments…the little ones like this one – and find value in it. Here I was waiting to get discharged and passing time. I have lost track of how many of these hospital name bands Chance and I have gotten this past year. They always seem to fall off of his little legs. But today it stuck and his little toes were poking downward…I saw this picture in my head and took it a moment later. Thankfully it worked out considering how limited I was.

Thankfully we escaped the E.R. without a surgery or getting admitted…here we both were feeling very relieved.

A couple hours after we got home there was a moment where Chance was fussy and I had pretty much done all I could. I sat him down for a moment and he continued to cry. Moments later his big sister scooped him up and walked around talking to him sweetly and he had stopped crying. I looked over and this was the sight I saw…yes, a priceless memory.

She really is the best big sister ever. Last night when we were worried we’d be back in the hospital she was asking “Will he have to have another surgery?” I told her I didn’t know…but that we’d pray he wouldn’t. She told me she didn’t want him to have any more surgeries. The more that happens to Chance I admit it does make me wonder how much it has begun to wear on Hope & Jaylen…I can only pray that instead of them feeling burdened or heartbroken that we’re not there for them quite as much…that they instead embrace one another…and their baby brother…and somehow all these trials will hold our family together and protect my little one’s hearts. I know every time Chance is hurting they worry about him and want him to be better.

Chance wasn’t fussy all day…but he definitely wasn’t himself. He still had moments where he was content on his own…the moments like these that I admire so much.

This morning Jaylen had a tough time when I left for the E.R. with Chance. He still doesn’t know much about what is wrong with Chance when things happen like today but he knew I had to take him to see the doctor. As I was about to walk out the door Jaylen ran to me crying and said “mommy don’t leave me.” He’s never said that. I’ve been working all these years so I know he’s gotten use to me leaving home. Sometimes he cries but most times he’s been just fine. He’s never verbalized that he didn’t want me to leave…certainly made my heart skip a beat. I reassured him I was going to take Chance to the doctor to make sure he was okay and we’d be right back home. He cried big huge crocodile tears and gave Chance and I both a hug and kiss before we left. That moment left me thinking at times today about how much his life has changed since Chance was born and how much his baby brother’s life is beginning to impact his own. I just hope years from now he’ll understand…I can only imagine how hard it’s been for him to go from being the baby to having his Momma consumed with another baby who has required a great deal of attention at times due to his medical needs.

We arrived home to Jaylen so happy to see his baby brother. Of course he made my day saying to me “you’re my best friend” followed by a hug and “Momma I lub you”. How can I not be totally in love with this kid?!

He was more than happy to let me take his picture too.

And he wanted to take pictures with me. We took a few photos and he had fun with it. I never take “just one” photo. I’d take a few and check them and then say “just one more”. Of course each time I’d take a few at a time. He agree to let me take “just one more” picture…not knowing I’d ask to take “just one more” a good  ten times. Fifty photos later I have a few photos worthy of sharing of me and my little man happy and silly.

Thank you all again for the prayers and sincere thoughts. Now we just keep praying that this little guy gets better and has no reason to return to the hospital.

I’m finally getting a little caught up with things…like photos. I posted photos from the past week from when Jason’s aunt Terri visited in flickr finally. It was a huge help having her here and looking back at the moments I felt up to taking photos certainly left with a few memorable moments that I know we’ll cherish years from now. I also added photos from the last few weeks…you know life has been crazy when I’m not keeping flickr updated! *sigh*

Though I haven’t been completely silent this past week, I have had so many of you contacting us asking how we’re doing that I thought it was time to finally share an update. I suppose if I look back at my photos in instagram snapshots this past week…it totally sums up my crazy week.

Here I am on break from Valencia and totally working on my “to do list” while recovering after surgery. I suppose that’s not the best thing to do while on medication and in pain…I’m praying I’m past this “recovery” mess soon because the fall is expected to be quite busy for me. I’m sure I’ll have that silly little mindmap finished soon to share it for those of you who enjoy my crazy mindmaps.

I truly hate taking medicine. I came home from surgery last week feeling a little dizzy just looking at the medicine Jason picked up from the pharmacy. After the first dose or two I realized I was never going to be able to keep up with it all without making a chart of times. Antibiotics + pain medicine. I pray the antibiotics are working better than the pain medicine. With all they had to do during the laparoscopy it’s left me in far more pain than I anticipated. I was told it is to be expected. It’s not quite as bad as it was the first day or two home but the last day or two the stinging abdominal pain is pretty persistent, even with pain medicine. Usually when I first get up in the mornings or in the middle of the night it’s more like a sharp stabbing pain…not fun at all. I know my body is still healing…right now I definitely still feel worse than I did before the surgery. *sigh*

Before surgery I didn’t think the topic of “milk” would become an issue. For close to the last six months I’ve been nursing + pumping to feed Chance. I’ve never had an issue with any of my children, however, in the last week I’ve noticed the milk supply plummet…at one point for a day or two down to nothing more than mere drops. Yes, I’m fairly certain a day or two I shed more tears than milk. It has nothing to do with the medication but more than likely a part of my body trying to rebound from going through surgery. My doctor and the lactation consultant have advised things like continuing to nurse, pumping more, eating oatmeal and trying the mother’s milk tea to help produce more. It’s been tough…honestly it’s almost like I’ve had to start over. Thankfully it’s slowly starting to get better…I think. It definitely has only made the past week a tad bit more stressful for me.

I suppose I should credit our lab supervisor at Valencia for cheering me up most this week with a new macbook pro laptop. For those of you who may not have heard, at the end of May my laptop crashed. I suppose I’m the one guilty of working an apple laptop to it’s death…something many consider impossible to do. My workflow has been disrupted all summer as I’ve found ways to somehow keep up with my busy schedule despite the computer issues. It doesn’t matter how bad the past week has been…an apple sure is one way to make me smile.

And really, the real thing keeping me smiling this week are the kids. You know I’m not feeling well when I haven’t been taking many photos…well, today I decided to take a few photos late this afternoon as I noticed Chance being adorable. He’s gotten into this baby talking thing lately where he makes the cutest coos over and over. I swear he’s the most social of the three kids thus far at his age. Here’s my baby boy who has had to put up with his Momma not feeling too well, barely producing enough milk for him, and not being able to tote him around as often or out and about as I normally do….and he’s just oblivious to it all and happy as can be. I think he just knows I need more reasons to smile. It was a dreary day out…so I was thankful to have high ISO to crank up on my camera, otherwise I would have never been able to take these photos. Yes, a silly photo opportunity today after noticing him coo’ing up a storm on my wrinkly bed.

They say you can see into a person’s soul through their eyes…I think we all can sense just how much this little guy will have to say to us all someday. He’s been through so much and still continues to amaze us.

The only thing missing today was Daddy who had to work. Today Jason made a comment about how every time he enters the room Chance smiles really big…sort of like the sign that he loves his daddy. I decided to take a photo of him sitting for the first time in a while. This little guy continues to amaze me. He sat on his own for a minute or two…with no help at all…and even let out a big smile…just like his Daddy was in the room with us.

While I was taking photos of Chance the kids were finishing up in the bath…I absolutely love to take photos of the kids when their hair is wet…for some reason it makes for some cute portraits….sometimes…like when they’re cooperative. Well, the whole time I was taking photos of Chance all I could think of was how awesome these two big kids of mine were and how I missed the days when I was able to just take their photos. It seems like Chance has stolen the attention when it comes to taking photos…something common in the first year with all my kiddos. Well, I asked them if I could take a few photos and thankfully they agreed. I love Jaylen’s little smirk lately…this is the expression he gives me when I ask him to smile.

Though I equally love his innocent look.

He begged to put his shirt on…and that’s when the really cute smiles happened.

Hope’s at that age where she’s usually pretty cooperative…but usually I get the “will you please hurry up and take my picture” look. I decided to take a series of half face shots…she’s still asking me why I only took a photo of half her face…but I love them…even more so because she acted a little silly and I managed to get her silly side.

Thankfully Hope & Jaylen were okay with me taking a few more photos of just them. I think back to 2009 and when I tortured them so much with the photo a day goal…and how much life has changed since then. I sure miss those days sometimes…I suppose taking their photos brought that deja vu moment of taking their photos so much back then and the days of when it was just the two of them. I sure love seeing how much they’ve grown to being such an awesome brother and sister…their love for one another sure leaves me speechless some days, like today.

I have yet to get this little “ear” trick on video…but I’m proud to have a little snapshot of it on camera. Jaylen still loves this ear trick his Aunt Allison taught him when she visited after Chance was born. Yes, you get the picture….he pulls his ear and his tongue moves…of course it happened when I was trying to get them both to cooperate for a photo of them both. I sure love the spontaneous silly moments.

I’VE BEEN “MOMINATED”
So I got this email earlier today from one of the editors of the Babble web site. Thanks to one of my awesome students I was “mominated”as being one of the mothers leaving a positive impact on others. Here’s a part of the message I received from Babble today.

“You have been “Mominated!” As part of Babble’s Mominations–a celebration of 100 mothers who are changing the world for the better–we’re looking to reward moms who’ve changed the way we view motherhood, whether that’s through activism, education, politics, science, or any other area that makes the world a little better. As a Mominee, you’ll have a chance at one of ten $5,000 prizes to the cause or charity of your choice.”

Seems simple enough, right!? I suppose it’s time to see just how much of an impact I’ve made…perhaps you all can help me. As “cool” as it sounds to be “mominated” for this distinction of being a mother who’s making a difference…really I’d love the opportunity to help the charitable causes I am so involved with. Instantly I thought of the Spina bifida association and Now I lay me down to sleep and how much of my help I know they need. At any rate, if you’re willing to take a moment to help me all it takes is you going to the Babble web site to the page for my “momination” and clicking “like”, retweeting, etc. – I believe the person per category with the most votes by the first week or so in September will be awarded the prize to give to the charitable causes of their choosing.

Thanks again to everyone for continually sending such uplifting thoughts as our family has been challenged so much this year. As rough as things have been it sure helps seeing the out pour of support again.

Since just before Chance left the NICU back in March we’ve been anticipating this day. Admittedly the anticipation came with a mix of hopes and fears. We are quite fortunate to live in Orlando so close and are able to receive such great medical care for Chance without traveling far. If you haven’t already noticed, babies with spina bifida require a great deal of medical attention. There’s a long list of specialty doctors who see the kids depending upon their medical needs.

Of course I came to the spina bifida clinic a tad bit overwhelmed with emotions and expecting to hear from several doctors on how Chance has been doing with his spina bifida from a medical stand point. I suppose the one thing I’ve learned in the last five months since he arrived was to pray for the best but to expect spina bifida to find it’s way back into your child’s life no matter how great they may seem to be doing. I imagine any parent with a child with spina bifida can relate to the nervousness that comes with the anticipation of going to the clinic, especially the first time. For me my distraction is always my camera…taking photos tends to keep my nerves settled…I really do consider it therapeutic. Today was the first time ever my battery in my camera died and I didn’t have a spare packed. I blame it on being so overwhelmed, rushing around getting ready and not feeling my best lately…it certainly left me feeling disappointed most of the morning. Jason reminds me all the time that sometimes moments should be kept just for our memory and not necessarily in a photo…something that isn’t something I completely agree with. As hard as it was…most of today remains only in memory with very few of the photos I had envisioned taking. I did manage to take this one photo of my baby boy just a second before my battery died.

We spent the entire morning at the clinic meeting with a number of doctors. Of course Chance was adorable as could be and rocked his first clinic. I’m fairly certain he won the hearts of all the ladies in the clinic today.

Today I was reminded that my baby boy was still growing well. He’s now 15lbs 8oz and 24 1/2″ long.

During the clinic we met with one of Chance’s neurosurgeons. He checked out his new shunt and said it looked to be healing great. In the next month or two we’ll be returning to the hospital for an MRI test to check to ensure it’s working well.

We met with the urologist and nephrologist regarding his kidneys and bladder function. It’s been a concern since he was born. As with virtually all spina bifida patients, he has a neurogenic bladder, meaning the nerves that control his bladder were damaged so they don’t quite work as well as a healthy baby. Thus far he’s doing well but there is a fear that comes with him having spina bifida that he may not be emptying his bladder completely. The ultrasound he had last week showed good results that his kidneys and bladder were still growing as expected. His bladder still seems a bit larger than normal and his kidneys seem a bit smaller than normal but we were told today that they’re nothing to be concerned with thus far but that they’ll continue to monitor their growth. I’ve been holding my breath because the first month of life he did at times have borderline or high blood pressure and even in the last week at times his blood pressure showed similar results. Today it was perfect. Often times the blood pressure is a sign that the kidneys are being worked too hard and may be enough reason to begin catheterizing a child to prevent any damage to the bladder or kidneys. So right now they will continue to monitor him and we escaped having to worry about cathing him. We were told that in the years ahead we may need to for social continence, but for now we can continue to enjoy him being a baby and just continue to watch for urinary tract infections that are common in children with spina bifida.

We met with the physical therapist and discussed Chance’s abilities thus far. They were impressed with what he’s been able to do to date and feel that thus far there’s no need for physical therapy but said they’d continue monitoring him at future clinics as he becomes more mobile.

The orthopedic team paid us a visit and check on Chance’s physical abilities. Mobility in the lower extremities is often weakened due to spina bifida. The nerve damage can affect muscle strength and the ability to move and feel their lower extremities. Thankfully thus far this is not a major problem with Chance. He’s moving his legs and feet and even seems to feel them. The doctor said he’s still a bit  young but it’s likely he may need braces to support his ankles when he’s strong and old enough to begin walking. Yes, walking…he said he anticipates my baby boy will walk. That thought makes me a bit teary eyed, more so right now because it’s a mere dream. During his exam the doctor said his leg and hip movement looked great but that he was a bit concerned that his left hip might possibly be dislocated. I’ve definitely noticed since doing his newborn photos that he was a bit more stiff in his hips than other babies I’ve photographed. Apparently in spina bifida patients fixing a dislocated hip doesn’t necessarily fix the problem because due to the nerve damange and lack of muscle control they’ll more than likely dislocate again if corrected. At this age it’s nothing for us to stress about but as he becomes more mobile it may influence how we offer him support to become more mobile. Before our next spina bifida clinic in six months he’ll under go an x-ray to confirm or rule out if it’s an issue for us to worry about.

We learned today that Chance likely has torticollis. Yeah, torticollis…that’s what I said…what the heck is that? It sounded a little scary for a split second and thankfully the doctor calmed my fears. It was noticed that Chance has a preference to turn his head much more to one direction and seems a bit weak in trying to do so in the opposite direction. We were told that it could be from when he was in the womb, though it could also be from going through so many surgeries and having a preference in how he lays while sleeping. So we were given a few simple things to do with him to help correct the problem and strengthen the muscles in his neck.

I suppose one of the best things I heard today beyond all the updates about Chance was having one of the orthopedic nurses compliment me for carrying Chance the “right” way in the bjorn. I have used the bjorn religiously for both Jaylen and now Chance. I don’t think I could function without it. Over the years I’ve had some parents who are obsessed with other ways of carrying their babies using wraps, etc. and have even been scrutinized by some who for whatever reason hate the bjorn and are convinced wraps are a better option. Everyone is entitled to their own opinions…I’ve found what works wonders for me…but having so many scrutinize me over the years I admit it was great to hear the support today. I was told that the bjorn is great for  babies because it allows them to sit freely rather than being balled up in a position that increases the chances for hip problems. Chance remained in the bjorn most of the morning unless doctors were checking him out.

We left today on a great note. Not only did we receive fairly uplifting news Chance decided he would pee and poop all over me. I’m convinced his last shunt surgery must have influenced how his bowels function because suddenly this week he poops just like a breastfed baby…after every feeding and at times right out the diaper. Every day this week I’ve been pooped on. And yes, I celebrate that knowing how many challenges this has caused him in the last two months. To top it off, as I was changing his diaper he began to pee. With having a neurogenic bladder most times he “dribbles” pee…but today he made sure to show off his ability to pee in a stream…which is a really big deal to me. All I could do was stand back and smile…and be happy that he was peeing just like all other boys.

The only thing that would have made today better was if my camera had been working so I could have had more moments in photos. Jaylen and Hope spent most of the morning with our friends in the clinic in the room next to us so I didn’t manage to even take an iphone photo of them…until this evening when we ran a few errands. Jaylen was sporting his cool gap batman shirt…with the cape and all. Hope decided to give him a piggy back ride….priceless.

You know…I only raise superheroes. My baby boy decided he wanted to fly around the parking lot like batman today. Hope gladly helped hold his cape as he flew around.

So there you have it…a day I’ve both anticipated and feared is finally behind us…now we’ll keep holding our breath and saying our prayers that spina bifida doesn’t try to creep up out of no where and surprise us again like it did this past week. We’re definitely overdue for a bit of a break from it all.

What a whirlwind this week has been. Typically this week is one of the busier weeks of the year for me as we’ve approached final exam week at Valencia I’ve been immersed in lots of grading as the semester comes to a close. Add in finishing up some tenure track training, photography, and helping out with the fundraising efforts for the spina bifida walk-n-roll and I must say I never imagined this week would end up like it did. Chance has now had six surgeries and thankfully we’ve finally made it home. It’s kind of scary how quickly life can change. I know we expected to have challenges arise due to his spina bifida…I suppose we were hoping we were past the biggest concerns…but we quickly learned that when we least expect it spina bifida can through unpredictable moments at our baby boy. Though I’m sure I could write forever about the rollercoaster of moments we’ve experienced, I find it easier to share through some of my photography a glimpse at what we’ve watched our baby boy endure. Once again he proved to be a tough little soul who continues to amaze us. Here’s a look back at the last 48 hours since we arrived at the ER through to bringing our baby boy back home…where he belongs.

Yes, finally he’s home…now we’ll keep praying that shunt continues to work well and has no issues. We’ve set up his crib so the mattress is elevated to help prevent swelling and he’s sleeping almost in a “nest”. Thus far it’s working. We return next week to the spina bifida clinic…where we know he’ll get lots of TLC from all the doctors who definitely have grown to love him as much as we do. Thank you all again for all your prayers and wishful thoughts…there’s no doubt how much our baby boy (and our family) is loved.

The last two weeks have been pretty challenging but there isn’t much that stops me from moving. Perhaps this past Friday was a full moon or the days all the planets were aligned and everything was meant to be chaotic. Yes, everything. Since having Chance I can’t say having three kids has really been that much more challenging…we’ve all taken to the transition far better than I had ever imagined. But Friday was “one of those days”. The kids are known to ride the rollercoaster with me…along with my emotions and stress and well, apparently me not feeling my best Friday was what gave them their permission to all go haywire. Chance was fussy. Jaylen was whiney. Hope instigated Jaylen to be more whiney. The kids bickered. And whined. And cried. Yes, by the end of the day there was a point where we were all in that mood where we had a house full of cry babies. Now a “normal” mother might say there was no way in the world they’d risk taking their children out…I mean come on…if they’re not behaving at home…how can you take the risk of taking them out on your own. But this is me and my kids we’re talking about. It was also the day Chance turned five months old and we had yet to take a picture. Hope proposed the idea of doing photobooth and I thought it was a wonderful idea. I knew after going so much of the day with everyone crying or whining it was time to escape.

Some of you may recall that back in December 2007 we began a photobooth tradition when Jaylen was just 2 months old. Back then I had the crazy idea of taking the kids to the photobooth on the monthly anniversary of their birthdays. A year later it proved to be a memorable experience that brought many fun memories for us all. We even continued doing it into 2009 where the kids had many silly photobooth memories for us to look back on. Sadly we don’t go every month as we once did. After the miscarriage I admit my world got a bit crazier and tougher to keep up with…it seemed to be one of the things I elected to sacrifice. Something I admittedly regret still. We do still go from time to time, but it’s not a “ritual” as it once was. So when Hope proposed the idea I gladly said “lets do it”…it was the PERFECT excuse for us to get out. We had taken Chance to the photobooth once before, however, this was the first time we have taken him on his monthly “birthday”. I have to laugh at the quality of photobooth photos…they are awful…and the one at Altamonte mall is so blurry. But really, its more about the experience. The kids love it. Here’s a glimpse for you all to see just how much fun they had.

At just five months old Chance really doesn’t know what we tortured him with. Looking back at the older photobooth photos I recall when Jaylen was his age…and seeing Jaylen Friday brought so much happiness and memories of those days when I wished he’d act silly. Friday he did just that…and enjoyed every minute of it. So for now, we’ll just let Chance play along…and something tells me years from now I’ll look back and enjoy seeing the kids enjoying a brief photobooth memory. A day that was quite draining for me turned out to be something quite special…and yes, another reminder that my baby boy is growing so fast. I have this feeling it’s only a matter of time before he’s making silly faces too.

A FEW VIDEOS
I finally managed to post a few new videos to share. I’m super excited to share them. This first video was taken at the beginning of July by Jason when I was out on a photo session for Now I lay me down to sleep. Jason managed to get Chance giggling so adorably for the first time on video. It was the perfect way to lift my spirits.

This past Friday when we returned home Hope was playing with her baby brother. He was again very giggly. I managed to capture a bit of it on video…absolutely adorable to see how funny he thinks his big sister is.

And I might be a little biased, but I’m fairly certain I have the cutest kids ever. Yesterday morning Hope took this video while the kids were playing with Chance. It should make you all smile.

When I first learned Chance had spina bifida I recall thinking it was some awful curse. Like the worst thing in the world that could possibly happen to me and to my family. A conceived notion that it was just one more stroke of bad luck and the initial thoughts that entered my mind were all the most awful things that could possibly happen. I kept thinking of what my baby boy might never do. Throughout the remainder of my pregnancy with him I gradually learned so much more about spina bifida through the many resources I was provided and things I learned online. Some of the most valuable things I’ve learned were from other families who were raising children with spina bifida. When I was pregnant I was still very apprehensive and scared to take time to meet all the spina bifida families in the area that had reached out to us. Since the fall I’ve experienced a strong network of families online and I’ve even gotten to meet with a few since the start of this year but today was the first time I really recognized a sense of community locally with other families who have been faced with similar challenges due to spina bifida. Yes, thanks to spina bifida I have a memorable reflection of today to share with you all.

We met this afternoon at the Altamonte mall for what we dubbed a “playdate”. It has a “play area” in the mall so we’d be able to let the kids play while the adults had some time to chat. Today was the first time I turned Chance facing forward in the bjorn…he loved every minute of it. Of course after running around taking photos for a while I was quite stoked to have my baby girl express an interest in holding Chance. I offered to let her carry him in the bjorn and she proudly toted him around for a little while so I could focus on photographing some pretty awesome moments today.

One of the most endearing moments of the day was seeing Hope from a distance caring for her baby brother. I adore my baby girl…she’s such an awesome big sister. I knew she’d love him before we found out he had spina bifida. But thanks to spina bifida I can sense she has truly embraced her baby brother and often expresses concerns and all her own hopes and wishes for her baby brother. Just like us…she hopes he will walk. She’s worried he might get teased growing up. She prays just like me that he’ll someday go “potty” like a big boy. She loves him unconditionally.

Though I had met with a few families separately this past year today was the first gathering of several families in the Central Florida area that I’ve been a part of. And we can thank Colleen for our little meetup. She was visiting Florida from Kentucky and expressed an interest in meeting with the other spina bifida families. If you’ve been following my blog since the fall you may remember me writing Colleen who is also a moderator of the babycenter spina bifida board after some very chaotic moments I faced as we were deciding how we’d proceed with the pregnancy. Most mothers who have a baby with spina bifida somehow connect with Colleen online. Through the outrageous number of responses I received last fall, many of which were very opinionated in personal beliefs, Colleen was one of the very few mothers I continued to correspond with because thankfully she offered an amazing amount of care and support without judgment. I’m still quite touched because she’s also the one who created the first ever worldwide spina bifida prayer day last fall, on the very day that I was to meet with Chance’s neurosurgeon for the first time. Yes, one person had the ability to reach thousands of people all because she knew I was faced with a very tough decision of whether or not we’d continue with the pregnancy…a decision many other families have faced. Yes, thanks to spina bifida I have had the opportunity to meet someone who has given so much of  herself to help other families who have been faced with the challenges of spina bifida. Colleen I can’t thank you enough for helping make today happen…and for the embrace you’ve sent us in the toughest year our family has faced.

Colleen’s son, Nate, also has spina bifida.

I believe Colleen is the only one of the group I met with today that went through prenatal surgery to correct her son’s spina bifida…and yes, this adorable guy is walking.

Remember Grayson? I met with Melisa and Grayson a little over two months ago for the first time. It was awesome seeing him again.

Oh, how I adore my buddy Grayson’s eyes!

We got to meet Gabriel again too!

Sorry Kim…we both knew it’d be inevitable that you’d get tortured by my camera.

I adored seeing how much Chance’s friend has grown.

When we confirmed this little gathering every one reminded me to bring my camera…not that I’d ever forget it. Though I took hundreds of photos, it was fun watching the others trying to capture their own moments on their cameras and phones.

Though it was our first time meeting Nancy and her son Joshua, she was another mother who had reached out to us last fall when we first learned of Chance’s spina bifida. I recall learning about her son, of course it was much more rewarding to see this little guy in person. He definitely loved my camera. He’s two and another spina bifida kiddo who just started walking recently.

Team Chance probably shouldn’t be promoting another team for the Walk-n-roll event, but obviously…we’re all in it to promote the cause. As much as I joke that Team Gower Power is our competition, they really are an awesome family we’ve come to adore. Nicole’s family is the first spina bifida family we ever met with. Jason and I took the kids out about a month before I had Chance to spend sometime with her and her kids. It takes a special and strong person to have a child with spina bifida…but most, aren’t given the option…spina bifida almost always is delivered in the form of a diagnosis during pregnancy. Nicole, however, made the decision to adopt not just one, but two children with spina bifida. It speaks volumes about what an amazing person she is. So yes, we’ll pretend for a little while that we’re competing to see who can raise the most funds for the walk-n-roll event, but there’s no doubt how much our families have come to adore one another. (Let’s go Nicole…get to raising that goal to 10k like Team Chance!!!)

When I was pregnant with Chance and worried about all the things he might not be able to do…I definitely didn’t think I’d meet a kid with spina bifida that would eagerly climb on things and jump off…over and over. Nicole’s daughter proudly made sure I got to see what she can do…who cares if she has spina bifida…if you saw her run and jump around today you’d never know she had spina bifida.

Just this past week I heard from a mother expecting a little one who has spina bifida in the next two weeks. When I informed her of our little get together she decided to take some time to meet with us. As tough as I know it must have been to build up the courage reach out and meet with other families while she’s still pregnant, I have no doubts that leaving us today left her a little more hopeful for what is ahead for her little one. Yes, it’s only a matter of time and I will get to meet her baby boy for newborn photos.

I also invited Laura, the only adult with spina bifida that I’ve met thus far. When I found out Chance had spina bifida I recall that first week reading so much. I hesitantly googled some things, like “spina bifida” with “orlando” in hopes that I’d learn a bit more about the local spina bifida community. Some how I stumbled upon some of the things Laura has written online about spina bifida. Back then all I recall feeling those first few days were my fears of all the worst things that might happen to my baby, but stumbling upon her web site I recall feeling an uplifting feeling of hope. She’s an adult, who has coped with spina bifida her entire life, and she’s doing just fine…she continues to be an inspiration to many in the spina bifida community. It was evident that all the mothers found her presence reassuring today.

When I first had Chance I recall meeting with Laura when he was about a week old one day when she was at the hospital for a meeting. I had hoped that she might be able to meet him that day but due to the NICU’s shift change and the nurses ordering me to go home when I was in pretty bad shape in my recovery they never got to meet, until today.

It was definitely an uplifting moment seeing Chance with his new friend.

As Laura agreed to help out holding my baby boy so I could run around taking photos of the other kids, I looked over and Chance was out for the count sleeping soundly with his new friend. I adored seeing the two together. It was a memorable moment for Laura too who paused to text and post photos of her with my baby boy from her phone.

Before we left Laura’s mother arrived and spent a bit of time with us…she’s someone who can not only relate to where we’ve all been…but with the challenges all us parents may have ahead.

I’m fairly certain my kids were happy I wasn’t torturing them as much with my camera today. In fact, they were so busy running around that after a while I felt bad that I wasn’t taking as many photos of them as I was of the other kids. Thankfully that just meant that when I did stop them they paused for a good photo. Hope definitely had a great day…yes, thanks to spina bifida she got to have fun today.

This time last year Jaylen was still the “baby”. Oh, how I miss him being the “baby”. But I adore knowing how much he’s grown to be more independent. In fact, he was running around playing the entire time having fun. He’s still too young to really understand what spina bifida is. He just knows Chance has had some “boo-boos”. As much as part of me still worries how my children may feel about the challenges that Chance’s spina bifida may bring our family, today I can thank spina bifida for helping my baby boy having so much fun with the others.

Yes, last year when I learned Chance has spina bifida I worried just as much about Hope & Jaylen as I did about Chance. I have (and sometimes still do) worry how Chance’s spina bifida may affect our entire family. But there’s no doubt that today we can thank spina bifida for a memorable day with all the others who joined us.

Thanks to spina bifida…today happened…spina bifida gave us bitter sweet memories that I definitely won’t forget.
…Thanks to you all for a memorable day…and for putting up with me & my silly nikon.