Spina Bifida Strong

Dear Life,

Many of you know Kumaka's story.  
We were told at 19 weeks of pregnancy that we would have a child with multiple severe birth defects.
Spina Bifida.
Hydrocephalus.
Bilateral Club feet.
We were told his quality of life would be non existant.
We were told to terminate our pregnancy.

 We were never told what our son could do.
We were never given any hope.
We were scared, but we forged ahead.

The first three years were rough, Kumaka had multiple surgeries and hospitalizations.

And then he found Wheelz.
And watched backflips in wheelchairs every day.
When Wheelz came to visit him after the worst surgery he had, the beginning of a transition happened.

Next he met Otter, and was introduced to Box Wheelchairs.


When he received his first Box Wheelchair, his world was rocked!
He became so independent, so athletic, and so CRAZY!






Years later, he is dropping in 9 foot bowls at the skate park, surfing, playing wheelchair basketball, even trying monoskiing!  Nothing stops him, he tries everything!

He is not weak, he does not have a poor quality of life!
He is Spina Bifida Strong!

The gift

Dear Life,

Vulnerable. 
Easily hurt. 
Yet extremely strong. 
That is the paradox of my my tall one. 
He has seen more hurt and pain within himself 
in the last few years that he never trusted anyone. 
Sometimes not even us. 
His story grew and grew within until his brain couldn't hold it. 
His mind was under so much stress it seemed like it was fracturing before our eyes. 
It was as if he was a piece of glass and he was shattering slowly yet devastatingly. 

After learning to slowly trust those around him, he started sharing. 
Little piece by little piece little bits of his story came out. 
Such a sad awful story, but to him sharing it was like giving a treasured gift when he did choose to share. 
It opened him up to vulnerability. 
And he got really frightened. 
Trauma can do that to you. 
But he slowly realized that those he chose to share pieces of himself to kept that special gift to themselves. 
So he began to trust. 
And he began to heal. 
Sometimes he fell back to his old ways. 
Old habits die hard. 
But we noticed a change over time. 
We noticed his strength. 
His courage. 
And the light started to come back in his eyes. 
He started standing tall, owning who he is. 
He stopped trying to hide, trying to shrink, trying to be invisible. 
We applauded this change. 
We were amazed and so happy to see our boy again. 
And over the last three weeks he was like every other teenage boy. 
He went to school, he practiced with his team and he worked out. 
He went to a football game. 
He smiled. 
Then he got braver. 
He shared his journey with those that have stuck by him but didn't really understand. 
His team. 
The courage he had to stand before thirty boys and share his personal hell and thank them for standing by him is powerful. 
Amazing. 
Scary. 
Today he is a little fearful. 
What will they think?
Will the tell others?
Will they think less of me?
Today he is vulnerable. 
30 boys now have a piece of him. 
I know they will treasure the gift that has been given them. 
And I know my tall one will be ok. 
He is the strongest man I know. 

#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 gift of life

Dear Life,

Today I feel prompted to talk about something that is a little sensitive. The topic is life...the gift of life.  It's a hot topic...people are very passionate about their position.  I don't want to take away someone else's opinion....just share mine and why I feel so strongly about it.

I want to talk about how a woman feels when she is pregnant....and has happily carried that baby to second trimester....and is waiting to find out if they are having a boy or a girl.  It's an exciting time...you may or may not have bought some clothes....if it's your first child you may have started putting the baby's room together.  Everyone in your life knows you are having a baby.  And then it happens.  You go to your ultrasound....grasping your husband's hand excitedly....and suddenly there's a knot in your stomach as you watch the tech's face drop...or the doctor doesn't talk for awhile as he's looking at the ultrasound pictures.  Suddenly the happy, beautiful, sunshine day has turned dark, dreary and so very sad.  You are told your child has Spina Bifida.  You are blown away.  You don't even know what that means.  You  cry and you ask what it all means.  You are told things like: your child might not walk, might be cognitively delayed, might have bowel and bladder problems, might have brain damage, might not live.  You are told that your child will not live a productive life.  You are told you have a small window to terminate your pregnancy.  In our case we were 19 weeks pregnant.  Almost half our pregnancy.  When you see ultrasound pictures, the "fetus" looks like a baby.  In your heart this is a baby.  And how do you process all of the doom and gloom the doctors tell you?  How do you figure out which path to take when someone from the medical field that you trust tells you it's okay to terminate your pregnancy?  When you are told worst cast scenarios, but in reality the doctor can't tell you exactly what to expect until the child is born.  How can we think about doing something so permanent to a child who has no voice?  Aren't we, as parents, supposed to be their voice from the very beginning?  And shouldn't the medical field support that notion?  No one told us that our child would have such a sparkly personality....that he would have the strongest disposition and not let anything stop him....no one told us that he would melt our hearts every day.  Why?  Because they can't....but they also can't determine what kind of challenges the child will have from an ultrasound. So what does a parent do with that?  Where do they turn?  Who do they trust?  They go to the internet....they search day and night...for hope...for a sign of joy in a scary land.  If they are lucky, they will find some pretty amazing parents who are willing to share their life with them to give them the strength to go through the hardest thing they have ever been through.  If they are lucky they see some pretty amazing children LIVE.  And if they are lucky....they realize that life is a gift...and just because their child has a diagnosis....it doesn't mean that is who they are.  All of the children I know that have Spina Bifida are first and foremost children.  They are people....they do amazing things...yes...some things take longer for them....or maybe they won't do some things that other kids do....but that is just a small part of who they are.  They have smiles that brighten a room....they have strength that you never thought a child could have....they are the hardest workers...and they love their life.  Their life is a gift.



 I feel so blessed to have an amazing group of women around me who are willing to put themselves out there, share their innermost feelings to help other soon to be mothers.  I am so blessed to have mothers who share their daily struggles and joys...so that we can all get through the highs and lows and know that we are all going to be ok.  There are scary moments...we've all had them...and been there for each other.  We've also rejoiced together...these women make my little world complete.  They laugh with me and they cry with me.  When I have questions...they are there with answers.  Not one of us regrets this gift we've been given...it's actually the opposite.  We feel humble, blessed, and incredibly happy that these children are in our homes. 

I feel strongly that it is my responsibility to talk about this....to share these feelings with all of you.  You see, there might be a mother...a scared, confused mother.....who doesn't know what to do.  They might read this and feel a little hope...they might ask me for more information.  And then they can enter this circle of mothers...this strong group of amazing people.....and KNOW that they can handle anything....and that this life is a gift.

Spina Bifida Awareness Day 18 - Nevaeh's Story

Dear Life,

I met this adorable mommy on a support group for SB.  Her little princess is so adorable and I am happy to share a little about here...here is Nevaeh (Heaven spelled backwards)...

Nevaeh was born April 2009 -

I found out when I was 5 months pregnant that she would have Spina Bifida.   We went in to find out if the baby was a boy or a girl. 

 They ended up telling us the baby had SB. We had very mixed emotions... what is SB? ...how did this happen? ...was it my fault? etc...I went in for another sonogram to confirm and get another doctor opinion and they confirmed.  They asked if we knew the sex told us she was a GIRL then gave us the option to terminate. I felt cornered by the doctor and my mom who was in the room I stood up and said no I don't believe in abortion. They explained it was called termination not abortion... but either way I could feel my baby girl inside of me and  I could never "kill her".  People question our ability to be parents due to our age because we are 21; they said she wouldn't have a normal life;  there would be many complications.  
  

*fast forward* 

Nevaeh is 3yrs old.  She is the most happy and  outgoing child I've ever met.  She has changed us by making us realize the VALUE of life! She has had one surgery at birth to close her spine and she has NO shunt! Though she cannot walk yet, she still gets around!  There is  no holding this child back!  She is the smartest child in her class and we are so very thankful.   I know we are some pretty darn awesome parents as well 

*God does not choose the qualified  he chooses the willing and qualifies them*