Saturday, October 31, 2015

Faces of Spina Bifida: 51 Strong

51 Faces
That's a whole lot of awesome!

Friday, October 30, 2015

Faces of Spina Bifida: Meet Caleb!

You already know him, but meet him anyway :)

Meet Caleb
10 years old
(TEN! How is that even possible ya'll?)

One word to describe yourself: Funny


What makes you awesome?

"I am a awesome because I have a wheelchair and I can do wheelies."

What is something you like about yourself?

"I am a bird lover."

What do I know now that I wish I had known when I first heard the SB diagnoses?

"Where to begin? I wish I had known how amazing our lives would turn out because of SB. If Caleb didn't have SB we wouldn't be the family we are today. I wouldn't be the person I am today. I am changed because of him. I wish I had known the amazing people God would put in my life that I wouldn't know otherwise. I wish I would have known that everything was going to be okay. It's not always easy and it's not always fun but we are better and stronger because of the struggles. I wish I had known how funny and smart and handsome he would be. If I had known how awesome Caleb would turn out to be....I wouldn't have been so scared."

Thursday, October 29, 2015

Faces of Spina Bifida: Meet Atticus and Colin!

Meet Atticus
9 years old

How does Atticus describe himself: Cool

What does Atticus most like about himself?

Atticus likes that he plays guitar the most! (He is taking lessons and doing pretty good at it).

What do you know now that you wish you had known when you first heard the SB diagnoses?

"I wish I would have known that everything will not be as bad as what you read. Even though it's terrifying, and I allowed it ruined my joy of pregnancy and the journey, I wish I wouldn't have let the diagnosis consume me."

Meet Colin

Describe Colin in one word: Loveable

What does Colin most like about himself?

"When I asked him what he likes most about himself he smiled and pointed to his humungous muscles."

What makes Colin awesome?

"His genuine love for people. Everybody! He loves to make people laugh, and will offer hugs to anybody, in the store, at the doctor, at school, he just knows how to make you smile."

What do you know now that you wish you had known when you first heard the SB diagnoses?

"I wish I would have known how very wrong the general perception of Spina Bifida is. I wish I would have known that I as a mother could do this, that I wouldn't fail him."

Wednesday, October 28, 2015

Faces of Spina Bifida: Meet Christian and Micah!

Meet Christian
9 years old

One word to describe Christian: Loving

What does Christian like about himself?

He likes that he is strong.

What makes Christian awesome?

"What makes Christian awesome is that he is the most loving little boy. He's kind hearted and truly cares about everything around him. He is funny, serious and mischievous all in one. He's the best boy a momma would ever want."

What do you know now that you wish you had known when you first heard the SB diagnoses?

"I wish that we would have known that it would be ok. Even when things are uncertain that we would have known that we could handle anything together. He's just a normal little boy and his needs are just like a normal kid."

Meet Micah
8 years old

Describe Micah in one word: Determined

What do you know now that you wish you had known when you first heard the SB diagnoses?

"That it is not a death sentence— the diagnosis does not define who they are! Sitting that day in the doctor’s office with pictures of Micah’s ultrasound, being asked what I knew about Spina Bifida will be forever in my mind. Everyday is presented with questions, areas of grey where there are no sure answers about what is causing what. Is a fever just a virus or is it something more? Or watching the new medical student following the specialist around tickling Micah's feet or asking him to wiggle his toes. All of this does not define this little boy the nurses placed in my arms 8 years ago. He loves geology, excels in reading and writing, loves to wrestle with his brothers and is a pro at giving the stink eye. All of these things is what I wish I would have known that day in the doctor’s office holding ultrasound pictures of a split spine."

What makes Micah awesome?

"No matter what Micah faces he knows God is on his side and he will be triumphant. There are ups and downs, but he’s never down for long because there is always something to celebrate!"

Tuesday, October 27, 2015

What the doctor didn't say about having a child with Spina Bifida

Doctors tend to have a lot of things to say when they tell expecting parents that their baby has Spina Bifida. Most of it is bad. Real bad. I've heard story after story from fellow SB moms and dads that were told truly awful things about SB. Inaccurate things. And don't even think about googling Spina Bifida...that will result in even more terrifying words and images.

I wanted to put together a post with all the things the doctor DIDN'T say about having a child with Spina Bifida. I asked all my SB friends to share the good things, all of those unexpected blessings that come with having a child with SB.

The doctor didn't say that I would find a vast online family that would support and encourage me, cry with me and rejoice with me. The doctor didn't say that I would love these people, many that I have never met, with my whole heart. The doctor didn't say that I wouldn't walk this journey alone, that I would have hundreds of dear friends walking the road with me. The doctor didn't say that my life would be enriched and better because of my SB family. -Cassie

The doctor didn't say how much joy this child would bring!! -Megan

The doctors did not say how much Micah would inspire everyone around him with his love for his life. -Sharon

Dr's didn't tell us how much we would come to learn about resilience, patience, fear, trust, understanding, obstacles, hurdles, pain, JOY and laughter that our neural tube defect babies would teach us.... their parents and caregivers...., siblings and all those that encounter these precious beings. -Jennifer

The doctors didn't say how much determination our son would have! -Tiffany

Doctors never told me how my child would defy the odds. How he would stare SB in the face everyday and say, "You do not define me, I define me." Doctors never told me how he would have such a love for sports and play them. Not just play them, but master them. They also never said how our family and community would support and encourage us. He inspires everyone he meets simply because he lives a life full of joy because all he knows is happiness and joy. -Kerri

Doctors never told me how smart my son would be. That he would be considered intellectually gifted. That he would be kind, caring, and a great big brother. They didn't tell me how much courage and strength he would have, that he would never give up on his dreams. -Star

How smart, kind and loving Joshua would be. -Heather

They didn't say how normal our lives would be, for one thing, or how amazing, smart, sweet, kind and engaging my child would be. -Jennifer

Doctor didn't tell me how AMAZING my boy would be, or how many lives he would touch, how magnetic he would be. Doctor didn't tell me what JOY he would bring. That God would deliver us from it all...and life is's our normal! -Allison

They didn't say how determined Eddie would be or how much personality he would share with the world! They didn't say that I would get to meet people that have the same struggles & are willing to help me through similar situations! Most importantly they didn't say what a blessing he would be! -Adrienne

That we would smile everyday! Because just like our daughter, our son is an amazing gift that brings us an abundance of joy even on the saddest, frustrating or most difficult of days. -Gretchen

They didn't say how wonderful and blessed our lives would be. He is the happiest and determined young man. His life has opened so many unexpected doors and met so many great, supportive people. -Susan

The doctors did not tell me how head over heels in love I would fall with this girl! They didn't tell me that everyday spent with her is an absolute joy and that I need to breathe in every precious second. They did not tell me how determined, stubborn and ready to prove you wrong if you tell her she cannot do something. They did not tell me that I would blink my eyes and she would be a teenager. Why don't they tell how fast they grow? -Carrie

The doctors didn't tell us that our daughter would be just like any other child. That she would make us laugh, make us cry and bring so much love into our house. They didn't tell us that through the bad moments or every days, that our daughter would show us the rainbow of life. They didn't tell us to not worry because we will love our child no matter how she is....and we do, more than we could ever love anyone!! -Ali

The doctors didn't tell me we would find a lifeline in a group of strangers -- people you have never met in person who knew exactly how you were feeling and would pull you from that edge after diagnosis day. You would lean on them in a way you couldn't even lean on your closest family and friends at that time because you were too afraid to put your fears into words. Strangely enough this group would become an extension, your new family of sorts, the ones who you didn't even have to articulate all your thoughts and fears , they knew them already, intimately. They hugged you with their stories of their children, shared their pictures and blessings of "real life", reassured you that you could absolutely be the parent that your child would require, and deserve. They promised much more love than uncertainty would rule our days. They were absolutely right !!!!!! -Holli

They told us NOTHING good! Everything bad she will never walk talk speak! She will spend a life time of pain suffering. They did not tell me how much a beautiful, adorible kind loving little girl she would become! Did not say how brave she would be and how much of a fighter she woud be!
She plays wheelchair basketball, wheelchair tennis! They did not say how independent she would be and how much she would overcome! She amazes me everyday and inspires me every single day! I love when she proves them wrong every single day! Everyone so focused on walking, Olivia does not walk but that does not stop her from doing anything, she just does it a little different in her wheelchair or crawling on the ground. -Alex

Doctors did not tell me how much joy Casey would bring to everyone around him. Or how much of a blessing he would be. He has changed our lives for the better, not the worse. He is not the burden on our older children I was told he would be, but instead their inspiration. They would do anything for him because he has softened their heart and given them a compassion for others they would not have had without him as their brother. He has made me into the strong, faith-filled and resilient woman I am. I was meek and mild before him. I have a voice now and am not afraid to speak up for what I believe. I have been able to share my faith in God with others who are struggling in their own lives and I am credible because they have seen my struggles and Casey's and the way I have been able to handle what comes our way because of God's mercy and grace. Doctors did not tell me how thankful I would be if I chose not to follow their advice to abort my precious boy and follow my own heart's desire. -Dawn

They didn't say that having a child with special needs would somehow create a sibling that has such a caring, thoughtful, and open perspective on diversity and the things that make each of us special and unique. Mason is maddie's big brother, best buddy, protector, And her biggest supporter... Having special needs in our life has created a sibling bond that I believe only comes through special circumstances. If only doctors could measure that kind of statistics... -Selina

The doctors did not say our son would have all the same opportunities as any other child. He would be able to do anything and everything he wants, it just may look a little different. When we were pregnant with our little guy I could not see he would be able to run, play baseball or soccer, climb a rock wall, ride a bike and the list goes on. As a family they did not say how close it would make us. It also makes us all enjoy each day to the fullest and don't sweat the small stuff. -Christy

A lot of people talked about the kids and I agree with all of them! So I'll add that it was the biggest challenge our marriage has ever faced and our husband and I have become closer, more united, and more appreciative of each other than we ever would have. -Becca

The doctor didn't tell me about the way I would find gratefulness for even the smallest things I had taken for granted with my other kids. Things like zip up Pjs, hearing your child's voice for the first time, watching your child wheel his first chair, or even or chase baby food when your baby is 16 months old. He didn't tell me about the friends I would make or that I would be so proud of a kid who has overcome so much in his short life. -Carrie

The doctors didn't tell me how happy my child would be! They didn't tell me how I'd gain a new perspective and appreciation for life. -Casey

Doctors didn't tell what amazing life experience it is to raise Abel and his extraordinary life.

Faces of Spina Bifida: Meet Gwendolyn!

Meet Gwendolyn

6 years old

Describe Gwendolyn in one word: Deep

What does Gwendolyn like about herself?

"I listen to my mommy"

Her twin sister also said, "Gwendolyn is awesome and curious."

What do you know now that you wish you had known when you first heard the SB diagnoses?

"Something I wish I had known when we initially got the diagnosis: I wish I could have seen into the future to see how loved she is by everyone. I wish I could have heard her whisper, "I love you" in my ear each night before she goes to bed. I wish I could have seen her eyes sparkle with pride when she learned to trust her strength and balance enough to walk independently across the room for the first time. I simply wish I could have tuned out what all the doctors told me "might" happen to by baby girl, and trust in God that my child would be just the way she was intended to be. She's beautiful and perfect just the way she is."

Monday, October 26, 2015

Faces of Spina Bifida: Meet Chloe and Caroline!

Meet Chloe
6 years old

What does Chloe most like about herself?

I asked Chloe last night and what she loves about herself the most she said "LOVES THAT SHE IS HAPPY "!

What makes Chloe awesome?

Her simple little words , she says now and then that remind me she will be just fine . Like the other day on the way to kindergarten out of the blue she says " Mommy, I was born ready " . She does not let anything get her down . We were at the store one day and she looked up at and asked why everybody was staring at her. I told her to tell them nicely it's not nice to stare . She looks up at me and says, "No mommy, they are staring at me because I am BEAUTIFUL"
She always has a away of making everybody around her smile ...

What do you know now that you wish you had known when you first heard the SB diagnoses?

"We did not find out Chloe had Spina Bifida until the day she was born. One of the scariest days of our life but if I could have only known that day how much she would mold our family together, bring out the best in all of us and how strong and determined she would be and not let it take her smile away, the scariness would have been replaced with comfort and hope."

Meet Caroline
Almost 3 years old

One word to describe your daughter: Loving

"She is sweet and spicy all wrapped into this incredibly smart and funny girl."

What do you know now that you wish you had know when you first heard the SB diagnoses?

"I wish I would have known that all the wonderful moments we would have with her would far outweigh all the scary and stressful days (and nights) her diagnosis have brought."

Sunday, October 25, 2015

Faces of Spina Bifida: Meet Kyra and Jacob!

Meet Kyra
5 years old

How does Kyra describe herself: Laughing

What does Kyra most like about herself?

 "That I am nice and silly."

What do you know now that you wish you had known when you first heard the SB diagnoses?

"I wish I had known that Kyra would live and she would have a wonderful quality of life. Kyra was diagnosed at our 20 week ultrasound with Spina Bifida and possible VACTERL Syndrome (which she has). We were offered a very poor prognosis and termination as an option. Even though I couldn't see God's plan at that moment, I had faith that he had one. I may never know all the reasons God chose for Kyra to have Spina Bifida and VACTERL Syndrome, but I am sure glad he chose us to be her parents. It has not always been easy and there have been many challenges, but it has all been worth it. Our journey with Kyra has shown me, beyond a shadow of a doubt, that there is a God and he is guiding us. Kyra's personality is a bright light and she affects and inspires all who know her. I am sooo proud to be her "mama bear"."

Meet Jacob
8 years old

Describe Jacob in one word: Spunky

What does Jacob most like about himself?

"Jacob loves his hair! Every time he gets a haircut he thinks he looks sooooo handsome!"

What do you know now that you wish you had known when you first heard the SB diagnoses?

"As a parent of a child with Spina Bifida I wish I would have known that everything would be just fine."
What makes Jacob awesome?

"Jacob has brought so much joy to our family. He has humbled me in so many ways I can’t describe. He is one of the happiest boys I know with so much love and energy to give to anyone. He has a passion for music and the most incredible rhythm. The absolute most awesome thing about Jacob is, his ability to inspire people. He has had a great deal of challenges throughout his life and as he continues to overcome each challenge he touches lives. He is simply a blessing!"

Saturday, October 24, 2015

Faces of Spina Bifida: Meet Eddie!

Meet Eddie
5 years old

Describe your son in one word: Awesome

What do you know now that you wish you had known when you first heard the SB diagnoses?

"That Spina bifida doesn't define my child & that he is a normal spunky 5 year old!"

What does Eddie most like about himself?

"He refused to answer.. But when he did all I got was "I am Batman" ... Hence the batman photograph.

So I'm going with he has a fantastic imagination & he doesn't let a little thing like being in a wheelchair stop him!?

Friday, October 23, 2015

That time we went to NYC to be on the Rachael Ray show!

We've had a crazy busy week ya'll. Sit down and buckle up because this is going to be long (but awesome) post.

A couple of months ago I heard from a segment coordinator with the Rachael Ray show. She had seen Caleb's face all over the place last October (you might recall our 15 minutes of fame last year) and made a note to contact me when Halloween rolled around again. We talked back and forth for a while and I didn't really expect anything to come from it. I was wrong. The show flew us out to NYC on Monday, we taped the segment on Tuesday, and came back home on Wednesday. That is the cliff notes version, here is the full story, complete with pictures.

Waiting at the airport Monday morning. This was the first time for the boys to fly. They were so excited about flying in a plane. I truly expected nervousness from them but they did awesome.

On the plane.

I just have to brag on this child right now. You all know how anxiety has been an ongoing struggle for Caleb. While he has improved so much over the last year, anxiety still plaques him from time to time. I anticipated a lot of anxiety from Caleb during this trip, especially with the plane ride. Ya'll he rocked it! He was a champ and he loved flying. We could not have made this trip a year ago with an absolute panic attack. I was floored by how smooth things went with both boys.

We checked into our hotel Monday evening, had a quick dinner, and went to bed early. We were absolutely exhausted from the trip. 

Tuesday morning a driver picked us up to take us to the studio for taping. We got to hang out and get ready in the green room while we waited to film our segment.

That's us!! What is happening? How did we get here?

Chillin' on the couch in the green room.

The show took such good care of us and even bought some ducks for Caleb's costume. You'll see his costume in just a minute. 

Benjamin piled all the ducks on top of Caleb.

The duck decoys were a hit.

Notice that I am assembling the costume in the green room. I had to ship the costume in pieces to NYC last week so it would be ready for me to put together on site when we arrived. This was incredibly stressful for me. It all came together great though.

The costume is actually a duck blind. It was Caleb's idea and I loved it. I named it the Quack Shack and Glenn made this amazing logo to go on the back. We had to add the hashtag because that is just too funny. #quackshack

It was super fun to be in the green room and watch Rachael Ray tape segments for her show. We got a backstage look at how things are done and it was really neat. We got to go out on the set before they brought in the audience. 

The bow tie was all Benjamin's idea. When he found out we were going on the show he insisted that he have a bow tie. He looked so sharp. Everyone (include Rachael herself) complimented his bow tie. He loved all the attention.

A little pose.


The coolest thing ever happened while we were there! As if things couldn't get any cooler! 
Jarod Miller was also a guest on the show and someone told him that my boy Caleb is a bird lover. He brought a Golden Eagle to the room for us to see! So cool.

Picture with my boys right before we went on the set to film. I was a big ball of nervousness ya'll. Seriously, I went into the bathroom and prayed like crazy before we went on.

The filming went wonderfully. We had an absolute blast and we feel so blessed by the entire experience. The show treated us so well and took such good care of us.

You can watch the segment by clicking HERE. It's about 4 minutes long. It's awesome!

Once we were done with the show we had the rest of the day and the next morning to do a little sight seeing. We walked (and walked and walked and walked) through Times Square and into Central Park. 
NYC is like nothing I have ever seen. There are people, tons of them, EVERYWHERE. There are people walking around all the time. It's crazy. The driving is crazy. The traffic is crazy. The noise is crazy. It was exhausting. 

In front of Central Park.

Benjamin is trying to sneak up on a squirrel.

There were climbing rocks everywhere. I couldn't keep the boys off them. He had to climb each one, and then I had to take a picture.

Another climbing rock.

While Benjamin was rock climbing, Caleb was bird watching.

Dad joined the rock climbing fun.

I love this photo. Benjamin had just fallen so Caleb is looking at him and Dad is laughing. See that guy in the tunnel? He was singing opera really loudly. New York City has some interesting folks.

Apparently Big Bird likes to hang out at the park with Elmo and Cookie Monster puppets. Interesting folks in NYC.

Checking out the ducks. 

We only had a few hours on Wednesday before we had to head back to the airport. We took the Staten Island Ferry so we could get a look at the Statue of Liberty.

The ferry ride was chilly but fun.

Lady Liberty. So cool.

I had to take this photo because NY uses the new accessible symbol. I had never seen it in person before. Kinda cool.


We had lunch in Staten Island before we took the ferry back to the main land.

Some of the buildings we saw while walking (and walking and walking and walking) around the city.

A very tired boy on the way to the airport.

There truly are no words for how blessed I feel right now. I still can't believe all of this happened. And all of it because I make wheelchair costumes. It makes no sense to me whatsoever. I'll never understand why these doors have opened for us. I'll never understand why our family was chosen. But I know that when God opens up a door, you walk through it. We had an absolute blast in NYC and on the show. It has been a wild ride ya'll. A wild ride indeed.

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