Spina Bifida....a boy just being a boy

Dear Life,

I haven't posted much about Kumaka and his life with Spina Bifida.
The reason?
Spina Bifida has not reared it's head in quite awhile.
He has been so healthy, so happy, and growing and learning and doing his thing.
He has been going to the skatepark regularly, surfing, and he even went skiing for the first time.

He is training for a ten mile "run" for his relay part of the Challenged Athletes Foundation triathalon in San Diego.



In short, he is being a kid.


He was so blessed last November to go to Costa Rica with his dad, his brother, as well as his BFF Hunter and his family and his other friend Joey and his family.  Ocean's Healing Group is an amazing organization that takes a few families per trip to the Shaka Surf Camp in Costa Rica.  The families surf every day, they ride quads, the zip line, and Kumaka had a blast.  Ricochet the Surf Dog helped raise money for the flights.  


We never imagined in a million years that we would go years without really worrying about Spina Bifida.  
We never imagined such a life for him.
We are so grateful for every day we have, and every healthy day we have.  
We are so grateful for the many friends we have made that also travel the Spina Bifida journey.

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

The tale of the mark of the warrior

Dear Life,

One day Kumaka asked about his scars.  He has quite a few.  At least 8, if not more.   And so, I told him the tale of the warrior.

Before you are born, you are a spirit.
You are taught many things.
Once you have learned all you are supposed to,
God meets with you, and he hand picks certain choice spirits.
He sees something special in these spirits.
A certain spark, a strength, a fortitude.
He asks them if they would consider being part of a very important group of people.
The people that will teach others.
But not because they are teachers, but because their personal challenges will teach others as well as themselves.
They will teach patience, love, empathy, service, strength, humility, hope and joy.
They will also be the cause of sadness, despair, anguish.
They will be the children who face medical issues.
They will face surgeries, hospital stays, illness, invasive treatments.
They will not be able to do what everyone else does.
Some will face radiation, chemotherapy, medications that make them sick.
Some will never walk, talk, see, hear, or eat by themselves.

Some will not live as long as others.
Some will be frail, weak, sickly.
But they will have the strength of warriors, even when their parents are spent.
They will have the courage of lions, protecting their pride.
They will smile, and the heavens will open up and shine down.
They will cry, and then smile the next moment.
They will wipe their mothers tears,  and make a joke to make their father smile.

These special spirits are sent down to do a mighty work.
And they know what they will be going through.
They know they will be facing challenges beyond comprehension.

This is when I told Kumaka that he was one of those spirits.
He knew what his journey would be like.
And he raised his hand, he chose that path.
Because he is special.
And all of those scars are the mark of the warrior.
They are reminders of his strength and courage.
They are our reminders too.

Witnessing miracles

Dear Life,

I know I've been telling you all about Sofi's story, but I have something in my heart I want to share.

8 years ago in July we went for an ultrasound to find out if our baby was going to be a boy or a girl.

We left the hospital in a daze, with tears rolling down our cheeks and horror in our hearts.
Tears because our perfect little baby was diagnosed with a neural tube defect called Spina Bifida, Hydrocephalus, and bilateral club feet.
Horror because we were told one of our options was to terminate.
Our appointment was on a Friday, and the radiologist wouldn't even explain what the diagnosis meant. He said we would have to wait until we saw our OB. I called her office immediately but she was gone for the weekend.
How were we supposed to go forward without knowledge?
We went home to our boys, who clamored to find out if they were having a brother or a sister. We took them to the pool, told them they would be having another brother, but he was going to have health problems.
The rest of the weekend was a blur...
Monday we met with our OB.
She explained what Spina Bifida was in greater detail and reiterated our option to terminate.
We forcefully told her we would not be doing so.
We were told our son could be retarded (their words), might not walk, might have learning difficulties and his quality of life would be bad and there was a possibility of death.
We wanted our son.
We lived through that summer and fall somehow, searching for hope.
8 years ago, there were no blogs, no Facebook, no groups.
We found graphic and rather frightening pictures that scared us to death.
When Kumaka was born, he had major surgery to close his back and place a shunt.


For 4 years, he struggled with various health issues and surgeries.

He had such an amazing spirit. His smile was so beautiful and he was always happy.

Even in the hospital, he would thank the nurses after putting in an IV ( with tears in his eyes).

He was a fighter.
A warrior.




And once his health got better, he was given the gift of a special WCMX wheelchair.

He learned how to go to skateparks and shred with the skaters.

He learned how to play wheelchair sports.

He wheeled his first 5 K.

He surfed.

He became an athlete.

He became a student.

He is now reading.
And sharing his joy of life with his friends.

Looking back eight years ago, we never ever thought our son would do one of the things he is doing.
And he is in good company. Within his circle of friends, there is an author, a cover model, an actor, an actress, athletes of all kinds, an aspiring swimmer, a dancer..... And the list goes on.
These children are all AMAZING.
Every day there is a new story being told....
Many parents were told to terminate.
Thank goodness they didn't listen.