Friday, October 2, 2015

#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.

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.

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,


  1. tears. Love it all. all the words. xoxo

  2. Love Kumaka! Love your family! So glad camp was such a great experience

  3. Although we have never "met" I have missed you my friend. I am not sure what happened but am glad to see an update.
    Have a great day.


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