Grant Dreams

Dear Life,

Ten years ago, Stuart and I went to the doctor to find out what the gender was of our fifth child.  
We were so excited!
After having four boys, we were secretly hoping for a girl, but absolutely knew that having a fifth boy would be awesome!
Driving to the ultrasound, we talked about names, and about the vacation we had planned the following week.
I was asked to come in by myself by the ultrasound tech so she could do measurements.
Stuart sat outside and waited for that.
With my full bladder, I waited, and waited, and waited.
I didn't suspect anything, although I did wonder why she wasn't showing me the monitor.
After quite a long while, she said she would get Stuart and the doctor.
Stuart came in, sat next to me, held my hand, and watched the doctor move the ultrasound camera all around.
He watched him take extra care around the baby's heart.
The doctor was silent, and I started to get a little nervous.
I didn't understand what was going on.
Stuart squeezed my hand, and kept watching the monitor.
Finally, the doctor put the ultrasound camera down for a moment, and said those fateful words "I'm sorry to tell you this, but the fetus has a birth defect called Spina Bifida.  There are signs of hydrocephalus as well as club feet on both feet."
The gender was quickly forgotten by the staff.
They were only worried about one thing.
Letting us know that if we moved quickly we could terminate our pregnancy.
We were shocked.
He let us know what to expect with a child with this disability.
Words like retarted, disabled, poor quality of life, possible shorter life span, multiple surgeries, multiple hospital stays, infections, the words burned our souls.
We wept for our child.
The child we wanted desperately.
We still didn't know the gender of our child at this point.
Through my tears, I said "We are keeping our baby.  This is our BABY, not a fetus.  Please tell me if the baby is a boy or a girl."
He said "The fetus is a boy".
I had to ask the doctor for a photo before he left.
They printed one.  Of his face.  As if we would be so disturbed by the baby's disability.

We were never told what our child would be able to do.
Just a lot of what he wouldn't.

Thankfully, we didn't listen to that doctor.

We did research Spina Bifida online. (Not our smartest choice)
We educated ourselves the best we could.
We reached out to others that had children with Spina Bifida.

And then we had our baby. 

LUKE KUMAKALEHUA JENSEN
(Kumakalehua is Stuart's Hawaiian name, and means strength or foundation of the home)


He defied the odds at birth.
He left the hospital after six days.
There were times of difficulty, surgeries, casts, infections.

But there was also JOY. HAPPINESS.

At three, Kumaka was working hard in therapy and watching videos of Aaron Fotheringham on YouTube.

At four, he had a pivotal moment in his young life.
He had hip surgery on both hips.

We reached out to Aaron Fotheringham who came to our house to visit our boy.

Aaron told his friend Christiaan Otter Bailey about Kumaka, and they met that summer.









Christiaan saw the big heavy chair Kumaka was in and said that wasn't going to do.
He asked Mike Box if Kumaka could borrow a Mini Box chair to see what he would do.

What wouldn't he do?

Over the next four years, Kumaka would ride the skate parks, surfing waves, shooting at the basketball courts, wheeling 5K's, sliding down the slopes on a monoski, riding a bike with his brothers, even playing soccer.  


He has become an athlete, a doer, a go-getter.
He tries everything.
He is brave, fearless, and JOYFUL.






How does he do all of these things?
Because people believe in him.
People like his mentor Christiaan.

People like Mike Box.

Organizations like Challenged Athletes Foundation.  

This October, Kumaka is wheeling the running leg of the Challenged Athletes Foundation Triathalon.  Daniel, a Marine Veteran and an amazing surfer and monoskier is swimming on his team,  and Tracie, a wonderful athlete and teacher is doing the bike.  Their team has set a lofty goal....to raise $10,000 for Challenged Athletes Foundation.  WHY SO MUCH?  Because they grant dreams.  They allow kids that are in wheelchairs, kids that have prosthetics, Veterans that have come home after tragedies,  to be athletes...TO BELIEVE THEY CAN DO ANYTHING.  There is NOTHING more valuable in life than that. Below you will find the link to Kumaka's page.  ANY AMOUNT YOU CAN DONATE will grant DREAMS. #TeamCAF

SUPPORT TEAM ROCKIN' WHEELIES for CHALLENGED ATHLETES

Be a life changer.

Grant dreams.

We were told all the things Kumaka couldn't do.

We were never told the possibilities. 

LROhana Magic

Dear Life,

What makes a FAMILY?
The traditional definition of family are parents who love, care for and provide for their children. 
This definition is important and essential.
But there is another version of family that I want to talk about today.
There is a family built from community.  
A community that came about because one young man was injured doing what he loved the most. 
Jesse Billauer was 17 years old and headed towards becoming a pro surfer when he hit a sand bar surfing.
He became paralyzed instantly and his life changed.
He decided that becoming a paraplegic wasn't going to stop him from continuing to enjoy life and that was how 
LIFE ROLLS ON began.
For the last four years, Kumaka has been blessed to participate in "They Will Surf Again" events in Huntington Beach and La Jolla California 
as well as tear it up at the Venice skate park at the "They Will Skate Again" events.  
Kumaka has learned so much from participating in these events.
He has become more independent, more willing to try things, knowing that he is ABLE to.



At the "They Will Skate Again" Event in Venice, California 2015 after landing his first rail attempt 










But he also has a very special relationship with Jesse and Sam and all of the volunteers that have helped him over the years.  






Jesse Billauer and Kumaka at "They Will Skate Again" 2015





This year his daddy couldn't come to the La Jolla event.
That was the first time his daddy couldn't be out surfing with him.
He literally cried for two days.
He didn't want to go.
He didn't want to surf.
I had to promise him that I wouldn't make him surf without his daddy.
The day came and all of Kumaka's friends were so excited to surf.
But he wasn't.  He was sad.

Sam Billauer, Jesse's beautiful and amazing wife talked to Kumaka a few times trying to change his mind.  (By the way....she is putting out fires all day to keep the whole day running smoothly....so the fact that she spent time on Kumaka to try to get him to surf shows how much she loves these kids)





Sam Billauer and Kumaka at "They Will Surf Again" La Jolla, California 2015

Later on, Cory, Kumaka's fearless Red Team captain, the man who has surfed with Kumaka every single time he's surfed took a few minutes to talk to him.  
He got him in the water to swim and then all of a sudden Kumaka was ready to surf. 


 Photo Cred: John Jefferson

Party Wave in La Jolla, California



Photo Cred: John Jefferson
Kumaka had the best time surfing with two of his friends.
Cory's son even surfed with Kumaka towards the end of the session.
After Kumaka was done, he told me how happy he was he surfed and wanted to go out again.  

Photo Cred: John Jefferson

The incredible Cory and Kumaka after surfing.

That is Life Rolls On Magic. 



These amazing people take their whole day out to help create magic.


This year, Kumaka's sister Sofi surfed for the first time. 
In Huntington Beach, our hometown, our sweet Bulgarian princess SURFED.
It was an amazing and beautiful experience.
When we watched that magical moment, we remembered where she came from.  
We remembered her first three years of life.

Three years in a crib. 
Never leaving it.
Looking at white walls.
No mommy or daddy to take care of her or love her.
No family.
She was free.....free 
from that past as she was held up by Cory.


He sat her in front of him on the surfboard because she can't lay on her stomach happily.
The minute he took off on a wave, she squealed with delight and her smile lit up the ocean.  

Photo Cred: Jerry Jaramillo

I'm sure God was looking down on that miracle moment and 
smiled.
She caught four waves that day.

Our little Bulgarian princess is now a mermaid. 

Photo Cred: Anthony Manliguez

From the orphanage in Bulgaria to the OCEAN in California.

That is Life Rolls On Magic.

That is LROhana 

{Ohana means Family in Hawaiian}

From the Jensen Ohana to the Billauer Family and all of the LRO volunteers and sponsors....thank you for an amazing year and thank you for making MAGIC.

Photo Cred: Anthony Manliguez

and a Bulgarian Princess

A life impacted

Dear Life,

It is amazing to watch when a life (or several for that matter) are impacted because of another person.

17 years ago there was a  17 year old boy.
He had a bright future ahead.
He was an up and coming young surfer.
Until the day his future was jeopardized when he was injured surfing at Zuma beach.
He suffered a spinal cord injury that left him a paraplegic.
The doctors told him he would never surf again.

Never say never.

Eventually he did start surfing again.
And then he created an organization to help others surf too.

His name is Jesse Billauer.

 Kumaka Jensen, Jesse Billauer, Katie Hull

As founder of Life Rolls On Foundation, Jesse now serves as 

the organization's Director of National Outreach. "LRO is an 

avenue to hope, independence, freedom, happiness, 

inspiration, and teamwork," he explains. "It is about bringing

people together and changing lives one day, one program,

and one person at a time.

Pic courtesy of Diane Edmonds, yourwavepics.com

This Saturday we saw so many smiles and so many miracles. 

So many of our friends surfed, some for the first time.

Pic courtesy of Diane Edmonds, yourwavepics.com

A beautiful smile from our dear friend Katie, after catching the first waves of the day.

Pic courtesy of Diane Edmonds, yourwavepics.com

Lourdes, catching a fun wave with a wonderful smile on her 

face.

Pic courtesy of Diane Edmonds, yourwavepics.com

Brock, smiling from ear to ear.

Pic courtesy of Diane Edmonds, yourwavepics.com

Carlos is getting his shred on.

Pic courtesy of Diane Edmonds, yourwavepics.com

First time surfing made Misty smile like an angel.

When it was Kumaka's turn, I watched from the shore as Kumaka was carried into the ocean.

Tears streamed from my eyes as I watched a team of twenty, all in red, waiting to catch him if he fell.

I knew behind me was our whole family, there to cheer him on.

I smiled... thinking about Kumaka's daddy, and two of his brothers who were there in that same ocean, helping him do what he "shouldn't" be able to do. 

As they paddled with him, farther and farther, I could barely see him.

I wondered what he was thinking.  

I wondered if he was scared.

And then all of a sudden I see them take off.....and it sounded like the whole beach let off a cheer as Cory stood up and then lifted Kumaka up in the air and they caught a wave just like that.

Pic courtesy of Diane Edmonds, yourwavepics.com

AMAZING.

Arms were in the air, tears were flowing, and all you could hear was "Yeah...go Kumaka"

Pic courtesy of Presley Photography

Wave after wave he surfed, until the last one...when his daddy got to surf with his boy for the very first time.

Pic courtesy of Diane Edmonds, yourwavepics.com

An amazing moment for Stuart...and a great day for a six year old boy.

And today, he told his daddy, 

"Thank you for being there for me daddy."

This made me reflect on the ripple effect from one person.

One person was injured...and made the choice to 

LIVE LIFE.

He shared his passion with others wanting to 

LIVE LIFE after a spinal cord injury.

That passion has created this movement called 

Life Rolls On.

All because this young man never gave up. 

Because he knew that Life Rolls On. 

Spina BIfida Awareness Day 1- Nathaniel's Story

Dear life,

The month of October is Spina Bifida awareness month.  I am dedicating my blog this month to raise awareness.  I am sharing my space with amazing people who want to tell a small part of their journey with my readers. This month I hope to bring not only awareness, but HOPE and the ability we have found to find JOY in hard things. 

First I would like to welcome my friend Gretchen Soares.

"My first child, Taylor, died at birth. Because of the complications with her birth I was followed very early on by high risk specialists with my pregnancy with Nathaniel. Even though all of the early markers for birth defects came back fine, I had a level 3 ultrasound (the highest level available at that time) done at 18 weeks gestation.

 It was during this ultrasound that we saw Nathaniel's lesion and he was diagnosed with Spina Bifida. An amniocentesis was run the next day to confirm the diagnosis.

I was devastated when I found out about Nathaniel’s condition. Not because of the condition itself, but because I felt cursed that I couldn’t have a “normal” pregnancy like so many other women. At that time, I felt like just about anyone could get pregnant and have a healthy child, but not me. I have since learned that I am in no way alone on that journey, but at the time I felt so alone. The next thing that hit me was that ALL of the doctors seemed to think nothing of telling me to terminate my pregnancy. After having no choice in the death of my daughter there was NO WAY that I could choose to end this pregnancy. No one seemed to understand that feeling in me. Even many of my own family didn’t want me to have such a “hard road” with my child. From the beginning I knew that I would ALWAYS fight for this child and their life. Before I even knew that Nathaniel was Nathaniel I knew that he was worth whatever life threw at us! The harder sell was convincing the doctors that we were having this baby! I was also frustrated with all of the “dooms day” predictions given to me by doctors.  NO ONE knows what life is going to throw at ANY ONE, I couldn’t understand the need to focus on the negative. Any of us could be a in accident tomorrow that changes the rest of our life, that isn’t a reason to give up on life today.

I am not going to lie… sometimes our journey with Spina Bifida seems HARD, but everyone has something hard their life at some point.  My son is an AMAZING individual with strength and charisma beyond words. He teaches me things daily, especially in my faith and perseverance! Things have gotten even more interesting in the last 5 years, as I have walked this journey as a single mom, but still, I would do it over again if given the choice! I have really come to learn that all things in life are a matter of perspective. I try to keep our family perspective on the positive things in our life, and teach my children that mountains are in everyone’s life. We all have to learn to climb some mountain! Spina Bifida is the mountain we climb daily!

Nathaniel is now twelve,and a go getter. He is blessed with strong use of his legs. He loves to play all sports (his favorite answer when asked “what is your favorite sport?” is “anything with a ball!”), ride his hand cycle, surf and do anything “techy” (play on the computer, play video games, steal my ipod, lock me out of my phone… you know, all those toys technology gives us!) Nathaniel does struggle with many mental impairments from his Spina Bifida, but they are just part of that mountain we climb! The interesting thing about Spina Bifida is there is NO predicting it, and no two cases are ever identical! I dare you to embrace Spina Bifida and see where it will take you as a family!

One of the things I heard A LOT when Nathaniel was diagnosed was that he would never walk. I know that he is blessed with his lesion being where it is and still being able to walk pretty well, but it still makes me laugh every time I have to chase him down! Growing up on the Central Coast of California, one of the things I did from an early age was surf. I never thought Nathaniel would get to experience surfing like I did. Well I was WRONG! Nathaniel has been surfing for the last three years, and just this summer he stood up on the surf board ALL BY HIMSELF! You bet this momma was on her knees BAWLING tears of joy and thanksgiving when that happened! I am amazed what my son can do he is one strong kid!

Every life is a journey and has some adventure to it. Spina Bifida may not be the journey or the adventure you were planning to take, but that doesn’t make your child any less wonderful! 

Embrace your journey, believe me, your child is WORTH IT"