Matthew

I imagine some of you may have been missing my newborn photography. Life has been busy. I recently had the opportunity to photograph a sweet 8 day old little boy named Matthew. He was so precious and new. I have this feeling you all will enjoy a peak into some of his first moments along with some photos taken behind the scenes of working on his photos. I know his family feels incredibly blessed and proud that he’s arrived. Dyanna thanks for the opportunity to capture some of Matthew’s first moments — I hope you all enjoy the photos.

Double digits.

It’s been a busy few weeks since the last time I wrote on my blog. So I suppose a bit of an update is overdue.

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.

2011 Walk-N-Roll highlights

“Spina Bifida shouldn’t be something scary, sad, foreign, or feared as one would fear a death sentence. And yet every parent who is hears “I’m so sorry -there is something wrong – your baby has Spina Bifida” feels those things. Every pregnant mother who is left with the decision on whether or not to terminate her pregnancy based on a horrifying description of the “poor quality of life” their child will have – feels those things. And it’s not only because we are overwhelmed with a diagnosis we didn’t expect – it’s because we are UNAWARE. We are uneducated, unprepared, unaware of what Spina Bifida really is. What it looks like. What it means for our children. What it means for our futures. We overlook what it CAN be because of what we FEAR it to be. Don’t let Spina Bifida continue to be like a ghost in the shadows – shine the light on Spina Bifida. Be aware of the research surrounding it, the miracles born with it, the people who live with it, and the many who strive to REDEFINE it.” -Joanna Penny

The 1st Annual Walk-N-Roll for Spina bifida in central Florida has passed us by. It rained today. And rained. I prayed it would let up and not interfere with our event but the Big Man had other plans. Yes, the morning started with myself…and many other families thinking that’s just our “luck”. I recall thinking last night and this morning as I heard the weather would be rainy that surely the Big Man would work miracles and let the weather cooperate at least long enough for us to celebrate all these amazing families who have went through so much being affected by spina bifida. Unfortunately it rained most of the morning…and at times it seemed like buckets of rain were being thrown down on us. I admit it left me feeling a little heartbroken, especially knowing how many of us poured our hearts into making this event a success in it’s first year. It felt like the Big Man was crying on us all.

But the rain didn’t stop us. There were many tents set up around the field where the walk was taking place. Most of us hung out around our tents or under umbrellas and waited for the rain to let up. I’m sure the rain kept away a lot of people, however, there were still hundreds of people in attendance and proud to support the cause. Around the walk area some of my spina bifida awareness campaign signs were on display near each team’s tent.

Thankfully the signs were waterproof. I was approached by so many people this morning complimenting me on the photography and messaging and all the work that went into this campaign. It left me a little speechless…but then, again, all the individuals that I photographed with spina bifida and being a part of this cause have left me incredibly moved beyond any words I can type. Hopefully how much all this has touched my heart is evident in this work.

Team Chance had a decent turn out considering the weather. A huge thanks to everyone who showed up this morning and stuck out the weather. By around 10am the rain began to clear up some. I will remain curious of how many more would have joined our team and event if the weather had been better. I know I had ten times more people planning to attend. I suppose there’s always next year, eh. Even if you didn’t make it out for whatever reason, thank you all (and you know who you are) for your support of Chance’s team and the cause.

When the rain began to clear up we walked.

I was thankful to have a couple great friends join us. Gian Carlo Brand (aka Blue) and Scott Taylor joined us to help do some photography and videography of the event. You know how much my kids adore taking photos with Blue.

Chance was a superstar this morning. Given how much I’ve blogged about his experiences with spina bifida he had quite a few people excited to finally met him. Surprisingly, he stayed awake majority of the morning. I know he doesn’t quite understand that we spent the morning celebrating him…someday we’ll look back and tell him all about today and how much he’s helped make today an amazing first Walk-N-Roll event.

I spent this morning celebrating this little guy…despite the weather. Yes, today it rained and it felt like God was crying but by the end of the morning I was reminded that those tears…are ones of happiness. He surely must have been so moved to see us all pull together despite all the challenges our families have faced.  It’s been a tough month for me as I’ve certainly found it a reflective one now that it’s been a whole year since learning he would be born with spina bifida. Last year I never thought I’d be celebrating spina bifida. I was scared and frightened of how much it might take away from my baby boy’s life and our family. I suppose I was reminded today that spina bifida is just as capable of doing the opposite. Thanks to my baby boy and the hard work of many others in the spina bifida community…we have brought a community of families affected by spina bifida together. And that is amazing. And through all the challenges…I suppose we all certainly need one day out of the year to come together and remind ourselves that the bond we share through spina bifida is an incredible reward.

If you’re interested in seeing other photos from the event I’ve posted many more in facebook in the spina bifida association of central florida page.

Again, a huge thanks to everyone who helped, who donated, who attended, and who supported our baby boy and the cause. You all are amazing. By the way, the Spina Bifida Association of Central Florida DID reach it’s goal of raising $50,000 which means we should get a lot more support and this community is going to grow a whole lot stronger! I recall just before Chance was born learning of that goal thinking surely that must be a typo….it had too many zeros…I’m sure so many thought that amount was impossible. I suppose it goes to show it wasn’t. Now it’s time to see just how much stronger we can build this community up in the years ahead. Something tells me it’s only a matter of time before more people are aware of spina bifida and its not viewed as the worst thing in the world.

2011 Orlando Walk-N-Roll update

We’re just a few days away from Orlando’s 1st annual Walk-N-Roll for Spina Bifida event so I figured I’d take a moment to update you all who might be planning to join us at the event.

The event is taking place at Blue Jacket Park in Orlando, Florida on Saturday October 29th, 2011.

Registration begins at 8am.

Kick-off begins at 9am.

Games, Activities, & Music will be between 9-11am.

Door prize drawings will be held at 11am. If you haven’t heard they have some pretty big door prizes this year!

This map was shared with me by those planning the event coordination. It might help you all see the walk area and locations you can park.

Additional information was shared today from those involved in planning the event that I wanted to be sure I shared.

A FEW TIPS BEFORE YOU ATTEND THE EVENT

  • When you arrive please check-in at the Registration tent located near the main parking lot of Blue Jacket Park.
  • If you have raised additional money, please bring the pledge forms and money to registration. It would help those collecting funds tremendously if you go ahead and place the forms and money in an envelope; however, envelopes will be available at the event. The pledge forms can be downloaded from your MyHQ (personal fundraising page). Additional forms will be available at the event.
  • There are separate registration lines for the individual participants and teams.
  • Following check-in, if you are a member of a team, you will be directed to your team’s assigned location which has been marked. Additional space is available for individual participants to bring a blanket, chairs, etc.
  • A group picture will be taken near the fountain at the beginning of the event.
  • Please feel free to walk as many times around the park.
  • Complimentary snacks and drinks will be provided, but you may also bring your own!

When do I get a WALK-N-ROLL t-shirt?
WALK-N-ROLL t-shirts are provided on the day of the event to all participants (walkers and rollers) who have raised or donated a minimum of $100 per person. We encourage you to wear your t-shirt on the day of the WALK-N-ROLL to raise awareness about Spina Bifida and recognize other participants. We do our best to provide enough sizes of t-shirts to fit all participants, but because this is not an exact science, some may need to select a size up or down. We apologize, but there is no guarantee that we will have enough t-shirts for all, since many participants will not register until the day of the event. T-shirts will be distributed to those participants who registered online and remaining t- shirts will be distributed on a first come, first served basis; however, we will order more t-shirts for our eligible participants. Teams may also choose to design their own t-shirts. Custom t-shirts help teams to stand out and be recognized during the event. Custom buttons, hats, or neck scarves are other ways for participants to show enthusiasm and support their team.

How does the t-shirt incentive work with TEAMS?
While we want to provide all team members with a WNR t-shirt, please remember that COLLECTIVELY enough funds MUST be raised to meet the $100 PER TEAM MEMBER; however, the number of t-shirts distributed to a team CANNOT EXCEED the number of registered members (registered online or at the event).

For example:

  • If a team raises $1,200 and it has 5 team members (registered online or at the event), only 5 t-shirts will be provided.
  • If a team raises $1,000 and it has 12 team members (registered online or at the event), only 10 t-shirts will be provided.

Also, t-shirts will be reserved for those members that have registered online, but we are ordering few extra to accommodate those team members who may register at the event and these will be given out on a first-come, first-serve basis. If we run out of t-shirts, we will order more.

How far will I have to walk/roll?
Our location offers two choices. You may choose the 1?2 mile loop or the 1 mile loop, with the same beginning and ending points.

How long does the WALK-N-ROLL last?
A brief welcome and announcements will begin at 9AM. After the National Anthem is sung, the WALK-N-ROLL will begin. When participants return from their choice of paths, they will enjoy live music, complimentary snacks and drinks, and games and activities. The drawing for the fabulous door prizes will be at 11AM. We will begin cleaning up after that, but you are welcome to stay and enjoy the day.

What if it rains?
The weather usually cooperates in October for a comfortable day. However, Mother Nature is unpredictable and the WALK-N-ROLL event will take place rain or shine. Please check the weather conditions and dress accordingly for being outdoors.

A FEW TEAM CHANCE UPDATES…
A huge thanks to everyone who has signed up to join Team Chance and to so many of you who contributed to the fundraising efforts for the Walk-N-Roll. As of tonight Chance’s team has raised nearly $4,000 of the close to $40,000 raised to date for the Spina Bifida Association of Central Florida…that’s 10% of all the funds raised…not too bad considering there are currently 40 teams signed up and hundreds of individuals registered. I can’t thank you all enough for helping be a big part of something pretty amazing and special to me & my family.

As a reminder, if you plan to join us the day of the event it’s encouraged that you register before the day of the event so that you don’t have to stand in lines the day of the event. If you’re joining Chance’s team you’ll see his team on the Walk-N-Roll web site, just visit the link to “join” his team. The registration process is fairly self explanatory.

Chance’s team shirts have arrived. I will only have a limited number on hand the day of the event so be sure you arrive early. I don’t have the time to coordinate a massive order and collect donations – there just isn’t a simple way and still ensure I don’t over or under order so the shirts will be distributed as fairly as possible to those that have helped us the most and to those present showing their support. I am sure if there’s that much of an interest we could always get more printed someday. Then again…there’ll always be more Walk-N-Roll events and more cool new super Chance t-shirts.

My baby boy proudly sported his team t-shirt today for you all.

We took a good 100+ photos…Chance is quickly catching on and showing his personality…it’s pretty evident he had enough of me taking his photo.

Something tells me we shouldn’t be too hard to find the day of the event…just look for the superman logo!:)Our family looks forward to seeing you all at the event. I suppose as the Walk-N-Roll finally passes it’s another point of us embracing him having spina bifida rather than fearing it. He’s here for a very special reason…and I think he’s done a pretty good job of proving just how miraculous his presence is. Thank you all for surrounding us with your support through all the challenges we’ve faced with this little guy.

Yes, son…look up because we’ll make it through all this spina bifida stuff together…and still find plenty to smile about….now it’s time to celebrate you.

Reflection

“There is a strength in vulnerability and exposing your scars to the world.” ~unknown

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.

F a c e b o o k   f a n   p a g e
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