Super Chance turns 1.

“Consider it pure joy, my brothers, whenever you face trials of many kinds, because you know that the testing of your faith develops perseverance. Perseverance must finish its work so that you may be mature and complete, not lacking anything. If any of you lacks wisdom, he should ask God, who gives generously to all without finding fault, and it will be given to him. But when he asks, he must believe and not doubt…” ~James 1:2-6

The last year has flown by. It seems like it was just yesterday when I got to see Chance for the very first time…yes, this was the first time I saw Chance last year just minutes after he was born in a photo Jason had taken of him. I saw him for only a few brief moments that day as he was brought to the NICU and underwent back closure surgery due to his spina bifida. I swear I stared at this photo most of the day he was born…so nervous, anxious, proud…and feeling so incredibly blessed. A year ago I didn’t quite know just how blessed our family would be.

My sweet baby boy is now one. Just before and after he was born I recall being scared of all the things that might happen and though it’s been a rollercoaster of a year…it has still been so amazing. Yes, my baby boy…he’s pretty darn amazing.

A year ago I knew he’d have to have at least one surgery…the day he was born in order to correct the opening in his back. I knew it’d even be possible that he might need a second surgery for a shunt to treat his hydrocephalus. A year ago I never once thought my baby boy would have went through 11 surgeries. Yes, this year has been a little surreal at times…but this kid amazes me. He’s been through so much and his spirit still shines through making us all smile. It’s hard to believe a baby that’s spent more than a month of his first year of life could still be this silly and full of smiles…but he is one of the happiest babies ever.

Let’s be honest…I’m a bit of a perfectionist…so having a child born a little “imperfect” was not something easy for me to accept. As a newborn photographer I spent so much time before conceiving him and all those months waiting to have him just wishing and dreaming of all those “perfect” newborn moments that I’ve been able to capture for so many other families. One of the toughest parts in having Chance born with spina bifida was knowing his first few weeks of life would be uncertain. I recall asking his doctor how long he’d be in the NICU and prayed he’d be out in record time. I was told if we were lucky maybe 5-7 days but it took nearly 3 weeks before we got to take him home. Yes, his entire “newborn” window of time to photograph him he spent in the NICU. One of the best things that has happened to me as a newborn photographer was having Chance – he taught me so much more and helped me push myself further in hopes of capturing some “newborn” moments at home with my baby boy.

When he was just 5 weeks old I managed to capture some of my favorite photos of him in his bowl. I’ve photographed him several times in this bowl this past year…including a week or two ago. My how my baby boy has grown in one year.

My once sleepy curly baby boy has become such a happy silly little boy.

I recall in the first six weeks after he was born being so worried about his back. It took so long to heal. Some might think of that scar or spina bifida as I once did…when i received the diagnosis it felt like it was the worst thing in the world to know he’d be born with this birth defect. But you can’t tell me this baby boy isn’t beautiful…and amazing. In one year he’s proven it…and it’s touching to know this sweet little soul has touched the hearts of so many.

Yes, Chance is loved and we are blessed. God blesses in ways we once never imagined – I still recall the days when we didn’t know how we’d make it through so much and now it all seems to just be a part of this journey our family is on. We now can’t imagine life without this little guy.

Knowing Chance’s birthday was coming up I took a little time the last week or two to photograph moments with him. Partly for his birthday party invitations but also knowing at some point I’d feel like writing once his birthday rolled around. He just recently started sitting on his own. At times he still requires a little support but we’re quite proud to see just how much progress he’s made.

I recall telling his physical therapist how I prayed he’d be strong and stable enough to sit on his own for just a short period of time for “the” photo for his invitations. I’m sure years from now he may not be too fond of this shot I took of him but it’s one of the most memorable photos I’ve taken of him in his first year…it helps symbolize just how much he’s endured this year…and how his spirit just keeps shining through.

A few times this year Hope has told Chance she was sorry…because much like my other children…he’d be tortured by my camera. Thankfully he’s too young to complain about photos. Someday I know they’ll be thankful I took so many.

Last week I took the kids out for a few photos together. One of the most rewarding parts of the last year has been seeing just how much my kids have grown…together. Though they have moments like all children where they bicker and antagonize one another they sure do have an amazing bond and Chance has helped pull them together.

Thanks to Chance our children are more caring, understanding, and compassionate. They’ve watched their baby brother go through so much that though at times they have been worried…they have since become almost like little protectors of their baby brother. Hope (a.k.a. self proclaimed future neurosurgeon) is often times compulsively checking his soft spot as she and Jaylen both worry about his shunt any time he gets fussy. I promise I didn’t stage this moment of her compulsive habits…she really does check it that often.

There was a time I didn’t know how in the world I’d live life with 3 children. Now I couldn’t imagine life any other way.

Chance has the best big brother. The sure do love each other. I’m sure it won’t be long before Chance begins to get Jaylen back for all those times he’s squeezed his little nose this year.

Chance has become a lot more curious lately. I’m sure it’s only a matter of time before he’s into everything.

Yes, Chance…a year ago I only got to spend just a few brief moments with you but we’ve since endured so much together. You’ve officially become a “Momma’s boy” and love for me to hold you close…and I’ll enjoy every minute of it no matter how tough things.

Chance you’ve become quite the little character lately…you sure are a big fan of your handy manny tools.

Today Chance turned one. We’ll be holding a birthday party soon but had to make sure we still celebrated today with our baby boy. I picked up cupcakes from The Yum Yum Cupcake truck for Chance to enjoy on his first birthday. Besides the fact that I only wanted nothing but the best for my baby boy…I wanted to be sure I supported a group that has been pretty amazing to us. Back in the fall you may recall that they held a fundraiser at one of their food truck gatherings here in Orlando and in doing so they raised funds for the Spina bifida association of central Florida. They not only helped raise funds but they helped brings a large group of people together to support a great cause. So we celebrated today with one of their tasty cupcakes.

This was Chance’s first ever cupcake. And boy was it yummy!

He still isn’t feeding himself so his big sister enjoyed helping him eat his cupcake. She said he had to get messy…so she enjoyed smashing his sweet little face with the cupcake. Chance was far more interested in devouring the cupcake.

He enjoyed every bite.

Give us a little time…I bet we might having him saying “yum yum” this year. He did say “gooo” a few times…which sure did seem like he was telling us that his cupcake was “good”.

Yes, my baby boy devoured the cupcake…all that was left was crumbs. Good job birthday boy…

As I wrap up this long winded birthday post I can’t help but type a few more thoughts as I reflect on this first year with my baby boy…yes, notes more for me to remember these moments years from now.

  • Chance has spent more than a month of his first year of life in the hospital. 18 of those days were spent in the NICU.
  • Chance has underwent 11 surgeries. 8 of his surgeries were shunt related. We were told shunts malfunction 50% of the time…we’d love to have the shunt that fell in the 50% of shunts that don’t malfunction category.
  • Now that Chance’s birthday has approached we can officially proclaim another victory. As of yesterday we’ve reached another record…He got out of the hospital after the first week of October and hasn’t been admitted since. That’s a new record for my baby boy…about 4 1/2 months.
  • Chance has a few nicknames…he’s been known to be called Chance, Chance Matthew, Super Chance, Chancinator, Chancey pants, Chancey Chance, boo, and boogie.
  • We’re convinced this kid may have super powers after seeing him go through so much…or perhaps its because he’s helped do so much for the spina bifida community since before he was born. I never once thought I’d have people thank my child for having spina bifida…yes, almost like him being born with it has been a blessing. To some that may not make sense…but I “get” it…this little boy of ours is here for a reason and it’s been amazing to see the impact he’s made on so many others.
  • I adore seeing my baby boy getting to be more mobile. He’s begun sitting. He’s begun scooting and low crawling…yes, better than some soldiers I know. He’s beginning to get himself into a crawling stance and it’s only a matter of time before he shows us just how much he’s capable of. I often times have people ask me “will he be able to walk?” and every time I hear that question my heart drops because I don’t know how to answer it. I think he’s going to be able to walk…he can move his legs, feet, and toes. But his leg strength is noticeably weaker and so now we’ve got him in physical therapy working to build his strength. Yes, I dream of the day that I can proudly say my baby boy can walk…that he can do some of those things that some thought he might never do.

Thanks again to everyone for your support and encouragement this past year. We are blessed far more than we ever thought we’d be.

Happy birthday baby boy.

Sweet little Sophia

This past week I got to meet little Sophia & her family for newborn photos. She’s one of a handful of newborns I’ve had on my calendar to photograph this year and so we’ve all been anxiously awaiting her arrival. She’s one of the more content newborns I’ve ever photographed so she made it that much more fun for me to capture some dreamy newborn photos for her family. Here she is last week just over a week old.

Sophia did so well that her parents & I agreed to take a trip out a few days later for some outdoors photos. In just a few days she went from being the most sleepy little baby girl to being totally alert. We spent a little time trying to get her to sleep but after a while we realized she was likely not going to sleep in the short period of time we had prior to sunset. It still made for some precious moments with her family. Her father definitely made my job a lot easier as he was a huge help during both sessions and was so calm and comforting to little Sophia. You can just feel how overjoyed he is to now be celebrating fatherhood.

Because Sophia was wide awake it definitely helped to have an extra hand keeping Sophia in position. Once I got her into a pose that worked her father helped me keep her in position until I was ready to take the photos.

Racheal & Danny now have this adorable priceless photo of their baby girl to cherish the moments when she was itty bitty.

It’s always a treat to get to admire the life of a newborn. Each and everyone is so unique and special…the more I do this I’m also reminded how unique each family is as well. Sophia has definitely been born blessed with such a loving family who absolutely adore her.

Racheal & Danny I hope you all enjoy the photos. Best wishes to your family!

Chance’s 2nd spina bifida clinic

“Sometimes not being in control is the most beautiful thing in the world.” ~unknown

As I’ve fallen a little complacent in updating my blog lately I’ve had some of you wondering how things are going. Life has been busy. Crazy. And full of…well, life. With Chance going through so many medical moments this past year I suppose it’s worth sharing a bit of an update as we just went through his second spina bifida clinic earlier today.

We feel blessed that we’re close to breaking a record in how long Chance’s shunt has lasted without a revision. The longest we’ve went without a  shunt revision or shunt related surgery is 4 1/2 months…exactly 138 days. We’ve felt blessed that he’s been out of the hospital for so long now and we’re only about a month away from breaking that record. Yes, by this time next month…right around his birthday we’ll be ready to celebrate if this shunt continues to function well for my baby boy.

I have to admit having him go through so much this past year has left me incredibly nervous, especially when he begins to present some of the symptoms of a potential shunt malfunction. Sometimes I worry that I’m overreacting when I begin to worry but I continue to be reassured not to doubt my instincts and that it’s better to be safe when concerns arise. Just one week ago we found ourselves worrying about Chance’s shunt as it began to swell a bit around the area on his head where it’s located and along the tube that drains the fluid from his head to his belly. That night he was very irritable and had me up nearly every hour and his soft spot kept going between being full to soft. To be safe Chance and I took a trip to the ER Saturday morning and he underwent a CT scan and an x-ray to confirm that his shunt was intact and draining properly. It wasn’t quite where we wanted to be for several hours last weekend but we were able to rest a lot easier afterwards knowing everything was okay. This darn shunt of his definitely keeps us on our toes as we watch this little guy grow.

It’s hard to believe Chance is nearly 11 months old. We’ve been enjoying watching a lot more of his personality shine through.

His big sister has been a huge help. A couple days ago she thought it’d be fun to have Chance sport a faux hawk. I suppose it’s fitting for super Chance to look “cool”.

Hope has begun to refer to him as the “chancinator”. Yes, not only does he have super powers…but this kid is tough…I suppose like the terminator.

This morning we went to the spina bifida clinic for Chance’s second clinic since being born. Right now he is scheduled to go every six months and due to his spina bifida we see a list of specialists that help us ensure he’s receiving the best care possible. When we arrived we took Chance to get weighed in. Suzanne Mckee who leads coordinating the spina bifida clinic in Orlando scooped Chance up just before she weighed him and shared with him some of his photos that are hanging in the clinic. I don’t think he quite realizes it yet but he’s loved by quite a few people in the spina bifida community and has helped bring a lot of optimism to the spina bifida community. Yes, baby boy…you have super powers to touch the lives of so many people…we sure are blessed to have you here.

I have to admit that I found myself growing quite nervous before clinic again. It’s a day that we get to chat with all the doctors about Chance’s care and as he grows we anticipate that we may need to adjust to the changes spina bifida may bring to his (and our) life. Thankfully as the day went on I was reminded that it would be a memorable experience…it sure helps to have such amazing people caring for our baby boy.

With as much as Chance has been through we’ve grown quite close to so many caring for our baby boy, especially Chance’s neurosurgeon. Hope absolutely adores her and made her this sweet note. We really do think she’s the best neurosurgeon in the universe!:)

I was a little surprised that I was able to hand Chance over the Suzanne today…he’s gotten really attached to me and is going through major separation anxiety these days. So it’s uplifting when anyone besides me holds him and he’s not crying.

So it was no surprise to see him crying in the arms of most others, including his favorite doctor Dr. Johnson. Okay, perhaps he remembers all the surgeries…the rule is we’re not allowed to say the “s” word around my baby boy because we don’t want him to ever have to undergo another shunt revision or surgery again.

Hope was out of school today so she got to accompany us to Chance’s clinic. She found her doctor’s coat and sported it this morning. Chance’s doctor has made that much of an impression on our baby girl that she has begun to proclaim this year that she’s going to be a neurosurgeon someday.

Dr. Johnson is not only great in caring for my baby boy but she has become such an awesome role model for my baby girl. As she had to take care of other patients she gave Hope instructions on how to care for all the patients in the spina bifida clinic.

As I began to head to clinic I recall hearing her throw all sorts of big medical terminology out at Hope to remember and we all just laughed…yes, the morning was memorable.

We headed off to clinic and as we waited to see about a half dozen specialists we waited. Hope got lots of attention from all the doctors who were thrilled to see her aspiring to be a doctor some day. Some even gave her a little bit of responsibility and by the end of the morning she ended up being nudged to consider being a neurosurgeon, nephrologist, urologist and a few other types of doctors. Yes, Dr. Hope had a lot of fun today.

The morning went fast. In between waiting to meet with doctors we got to chat and catch up with a few of the other families we’ve become connected to since Chance was born. I recall when I was pregnant with Chance being scared of all these doctor’s appointments…yes, they still make me a bit nervous but the last two spina bifida clinics have almost been a lot like a mini reunion with other families with children with spina bifida who have become a lot like family to us. Chance was quite content most of the morning…he slept for a good hour or more of it.

You’d think the kids would have been acting up with as much as we waited…but they were amazing and had fun. Jaylen enjoyed having Jason with us this morning…they goofed around a bit towards the end of the morning and Jaylen was incredibly happy to get all the attention.

Before we went to the clinic I had considered letting the kids perhaps spend the morning playing elsewhere with some of their friends…but I’m glad they accompanied us. Being in a doctor’s office all morning all morning might not be the ideal place for kids but being at the clinic really feels like a family event for us to be together for. This baby boy of ours is going to need lots of love and support in the years ahead and it’s going to take all of us…thankfully the kids did amazing.

By the end of the morning we found ourselves relieved that Chance’s second spina bifida clinic went well. I suppose all the photos are great but that you all might be interested in how Chance is doing now that we’ve talked to the doctors more…so here goes:

  • Chance’s shunt is doing well. All the tests came back great and now we just keep praying that it keeps working well. It still continues to get poofy or swollen at times but it’s likely due to growth changes and congestion that he’s had in the last week. We’ll just keep watching it closely and praying for no more surgeries.
  • Chance’s kidney and bladder tests came back great. The doctors seemed thrilled to tell us how well he’s functioning in these areas. With spina bifida bladder and bowel problems are common. It’s still too early to tell how he may be affected with these concerns but right now we are thankful that he’s able to void on his own without assistance and that he hasn’t had any urinary tract infections. His bladder and kidneys are growing well and look very healthy so we’ll keep caring for him like any other baby and pray we won’t have to intervene any.
  • We met with the doctors and physical therapists and to discuss his physical therapy. He’s still challenged with sitting. He can sit independently but he wobbles and will throw himself back out of fussiness. We’re told that’s likely behavioral and that it’ll take time for him to correct. He’s still not crawling but his upper body is incredibly strong and he can pivot around and slightly scoot on the floor enough to reach for toys. Though he’s behind in comparison to other babies his age, for a baby with spina bifida we were reminded that they will all be different and we just need to be patient and work with him the best we can around his capabilities and in his own time he’ll show us just how much he can do.
  • Chance underwent an x-ray this morning of his hip to ensure neither of his legs were dislocated. During the last clinic there was a concern that one leg might have been dislocated but the x-ray this morning confirmed it was not. We got to chat with the doctor this morning about his orthopedic function and this far we’ll keep working with getting him strong enough to want to move. He’s still no where near standing on his own so we have to wait and see how he’ll be when he reaches those milestones. They suspect that he may need AFO braces eventually to help give his legs a bit more support to stand but we’ll wait a bit longer to see just how much he can do on his own.

Yes, I was reminded before we took Chance to his clinic how tough it is to not be in control of all these uncertainties that come with him having spina bifida. I recall last night really thinking all over again about how much I wished he didn’t have spina bifida…but he does, and we can’t change that. And now today after clinic as I breathed a huge sigh of relief I was reminded that not being in control really can be a beautiful thing…we’ll just have to keep trusting that the Big Man above is control and will take good care of our family and this amazing little boy of ours.

What I vow to do in 2012

“You gain strength, courage, and confidence by every experience in which you really stop to look fear in the face. You must do the thing which you think you cannot do.” ~Eleanor Roosevelt

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

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

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

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

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

Autumn

This past week I got to meet Francesco & Heidi’s brand new little girl, Autumn. She was born only about a week before Christmas and I met her at just five days old. Adorable. Precious. Danty…and yes, perfect. I adored every moment spending time with this little peanut…I think you all will agree she’s beautiful. Congrats again Francesco & Heidi…Autumn sure is a sweet little blessing.

F a c e b o o k   f a n   p a g e
T w i t t e r