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. 

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.

#BeyondLimits with Spina Bifida

Dear Life,

9 years ago, our lives were rocked when we walked innocently into an unltrasound office to determine the gender and overall health of our fifth child.  As the tech rolled the camera around my quite large belly, she was very quiet.  And she spent a lot of time doing things.  I didn't really think anything of it, as I was really concentrating on my very full bladder.  Finally the doctor came in, spent even more time looking at things, and then said the words that we were not prepared for.  "I'm sorry to tell you this, but the fetus (yes...not a baby) has Spina Bifida, Hydrocephalus, two club feet, and possible other issues.  Due to the severity of the birth defect, and the lateness of the pregnancy, you don't have that much time to terminate your pregnancy."
Well.  OK then.
We left the office obviously in tears and horribly scared.
9 years ago there wasn't the amount of social media there is today.
We made a huge tactical error.
We went on Google.
If you are told you have a medical issue, don't go on Google.  Just don't do it.
We had to wait a whole weekend to meet with the OBGYN.  
She also offered us termination as a "solution".
We told her in no certain terms that we wanted our son.

Time went slow during my pregnancy.  
We met a lot of doctors and did a lot of planning.
But there was a lot of unknowns.

FINALLY, on December 20th, 2006 an amazing gift was born.
Luke Kumakalehua Jensen.
Best Christmas Present ever.

He was born with a huge hole in his back.  
We could see his spine.
It was very scary.

He needed surgery right away.
Six hours after he was born, he was whisked away in an incubator.
His back was closed and a shunt was placed.

We were originally told he could stay up to a month in the hospital.
He rocked it even back then and left in six days.

Over the next three years, we were very focused on his health.
Physical and Occupational Therapy twice a week.

Multiple feet surgeries.
His first 8 months of life he lived in casts.

3 shunt revisions.
Multiple hospital stays for UTI's. 

We thought this was going to be life for Kumaka.
Something changed when he hit four though.  
He had his hardest surgery to date. 
12 hours of hip surgery.
12. 
Hours.

The next day he needed a blood transfusion.  
He was in a spica cast for 6 weeks.

And then the weekend he got out of the spica cast he broke his right femur right above his knee in HALF.
And ended up in the spica again.
But a very special person came to visit.
Aaron "Wheelz" Fotheringham, the first every wheelchair athlete to land a backflip and frontflip in a wheelchair.
Kumaka has watched his YouTube feed for years.

Aaron came to hang out with the kid in the giant green cast and we thought that was the coolest.

From that meeting, Aaron told Christiaan "Otter"Bailey about Kumaka.

We met Otter that year as well, and when he saw Kumaka's 35 pound wheelchair he was determined to get him into a better chair.  
Early the following year Kumaka was allowed to borrow a 14 pound chair.

WHAT A DIFFERENCE.
NO ANTI TIPPERS.
NO HANDLES.
Better figure it out!  
And he did.  
That summer he went to his first Life Rolls on "They Will Skate Event" in Venice California.
He had a BLAST.
That was the beginning of Kumaka realizing HE CAN DO STUFF and it was pretty cool.

We started taking him to the skate park pretty regularly.
He got braver and braver.

Then he went to a surf event with LRO.
He loved surfing.

One more thing he loved.
And something he can do with his dad and his brothers.
It was amazing as parents to watch Kumaka grow and learn and literally FLY.
Then this summer we did something outside of OUR box.
We let him go to summer camp.
Like he went away for a week without us summer camp.
He's eight people.
He cried.
My heart broke.
And then he came back a different kid.
A grown up kid.
A more independent kid.
And I knew.
He's learning the best things.
He's learning to be a kid.
At the skate park.
At the beach.
On the basketball court.
At camp.

It's not about that diagnosis.
Yeah, we have to manage it.
But it's now about how he LIVES IT.
And let me tell you,
HE LIVES IT.