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. 

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.