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. 

#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.

The Sheckler Foundation Gala

Dear Life,

A few years ago we met this girl.   We call her Peach.  

You know.
She's the girl behind the magic shoes.
The shoes that make kids strong when they are going through hard things.
The shoes that give kids the ability to talk about something when there is nothing else to talk about.
The girl that teaches KINDNESS matters.
Peach's Neet Feet.

She told us about Ryan Sheckler.
A year and a half ago I didn't know who Ryan Sheckler was. 
Ok....I'm old. 
Whatever.
Keep in mind that two  and a half years ago was the first time I set foot in a skatepark. 
Like ever.
And it was with a bunch of people in wheelchairs with Life Rolls On.
At that point all I knew was the skate park was an amazing way for Kumaka to level the playing field....he was already on wheels after all.
I discovered that the able bodied skaters were pretty cool, that most of them thought that Kumaka was pretty awesome for trying stuff and they were all super cool about giving him a helping hand when he needed it.

(Who knew I would end up becoming a skate mom???) 

Peach entered an initiative called "Be The Change" that is hosted by The Sheckler Foundation. 

"In 2012, we launched our “Be the Change” initiative. This web-based program allows our supporters to nominate the areas where they want to see change occur in the lives of children and injured action sports athletes. Then our entire network can vote for the cause they’d not only like to see win, but will support. We love that our supporters now have a voice and a platform that help guide our fundraising and giving. The Sheckler Foundation will come along side the winner giving them a $10,000 grant and help make their plans a reality!"  

Peach invited some of her crew to the Sheckler "Skate For A Cause" event where she was awarded the "Be The Change" grant of $10,000.

It was a great day of skating, game playing, and meeting new people.  That was the first day we met Ryan Sheckler.  The next day, we were lucky enough to go to his compound to watch a few Peach kiddos receive their magic Peach's Neet Feet shoes and since there were skate ramps there,  SKATE.  

 Ryan gave Kumaka a hand up and a tip on how to go down this pretty steep ramp.  Kumaka had a blast and it was so fun to hang out with Ryan and some of his "Board"members.  But it was even cooler to see people making a difference....people being KIND.  What amazing examples to our son.  To this day these people keep in touch with us.  

To be honest, we didn't really think we would see Ryan and his family again.  I mean...he's famous and pretty busy! But I learned something about this family, about this foundation.  They don't meet you, take you in, and then never see you again.  Once you are in their circle, you are a part of the Sheckler Foundation Family.  And it's a pretty amazing family.  This year, at the Skate for a Cause event, The Sheckler Foundation did something pretty amazing and allowed an exhibition of WCMX skating prior to the pro skating that was done.  Aaron "Wheelz" Fotheringham,  Mathew FloHawke Hawkins, Quinn Waitley, Riley Phelps, and Kumaka were invited to skate for half an hour (Also pictured is Box Wheelchair rep and mentor Troy McQuirk) and it was pretty cool to show others that adaptive athletes can rock a skate park.

What a great day that was!  

A few months later, Kumaka and a few of the kids he has met through the Sheckler Foundation were invited to the inaugural Sheckler Foundation Gala prior to the yearly Golf Tournament that is their huge fundraiser.  Kumaka was very honored and excited to get dressed up and greet the guests as they arrived. 

 Prior to dinner,  a few people that were touched by the Sheckler Foundation spoke.  There were no dry eyes in the house.  As I listened to the stories, I realized that although Ryan Sheckler is a very busy young man, traveling all over for his sport, his endorsements, etc.   he takes time out of all of that to let his community know that he cares.  When it matters, he is there.  This young man, this foundation, doesn't stop at writing checks.  They truly care about people.  About community.  About family.   

On Instagram you will always find an encouraging note when someone is going through a hospital visit, a cancer scan, or just a birthday celebration.  Small details matter.  People matter. We have been truly blessed to know amazing people changing the world.  Ryan Sheckler and his Foundation  show us that he embodies the "Be the Change" movement he shares with the world.  Check out his foundation....and ask how you can Be the Change in your world!