Paper does not define him

Dear Life,

One of the catch phrases in the Spina Bifida community is Redefining Spina Bifida.  

de·fine: to determine or fix the boundaries or extent of.



When your child is born with a disability, some doctors like to keep your child in a box. 
They want to do what's the least expensive, least time consuming, least amount of work on their end.
They say "Your child won't walk; his level of damage to his spine is too high and it's just not possible.  A wheelchair is his only option."
They want to define his abilities by the diagnosis.

There are so many other factors when dealing with abilities. 
Like a child's determination to do the "impossible". 
Like a child's fierce independence.
Like a child's will.

Let's give that child a chance.
Let's give him options.
Let's see what he can do.

He might just surprise you.
He might do more than what the paper says he can.
He just might make up his own rules.

That is Redefining Spina Bifida.

Today I was speaking to Kumaka's physical therapist about what we should be doing about his walking.  I stressed to her his absolute desire to walk (which is funny because I never pushed for that...my biggest push was for him to stay healthy) and for independence.  We were talking about ways he can accomplish his desire to walk, being safe while doing so, being independent, and being as fast as little Speed Racer can go.  

And then she surprised me by saying this:
"Kumaka has taught me a lot.  He has taught me that what is on paper doesn't matter.  It's up to the child..we have to provide things for him to do based on his desire and ability to do so.  Some doctor's would push for him to just be in a wheelchair.  Cheaper, easier, done and done.  Thankfully, Dr. Rosenfelt is on board with him standing and walking.  With other doctors that might not be the case."

I am so grateful that we have a physical therapist that goes to the beyond the typical to give Kumaka the best of the best.  I am grateful to Dr. Rosenfelt and his team at CHOC for not putting Kumaka in a box.  

I am amazed daily by this boy....and how he Redefines the things on paper every day.  

Photo by: picseez

He wants to walk

Dear Life,

I have seen determination.

For six years I have seen determination.

Every day.

Determination has a name.

Kumaka.

This picture is at birth, isn't he adorable?  When we saw him, we weren't sure he would live past his first surgery...the one that closed his back and placed a shunt.  That first surgery on my six hour old baby was a very long five hours.  We expected to be in the hospital for weeks.  He came home in six days. 

Determined little baby.

At two weeks, he got his firsts casts to straighten his clubbed feet.  He had to get them changed weekly for months.  While all of that was going on, he had to learn to sit up.  

For a long time he couldn't hold up his head.  This picture is from his first Easter...he was so serious back then.  

A few months later he was able to sit up using the Bumbo...and he rocked his casts.  

Determined baby.

When he was almost one, his PT taught him to crawl.  She would place toys down and he had to learn to use one knee at a time. 



And crawl he did. His little legs looked kind of froggy at first...and for awhile he did army crawling...but eventually he got the hang of it. 

Determined little baby.




He's always liked to be fast...so we asked about a wheelchair.  The therapist said that typically the insurance doesn't want them to have chairs until they are five.  I told them he need one now. There was no way I was going to push him around in the stroller not participating in life.  Thankfully his Physical Therapist saw how determined he was and let him start out borrowing this wheelchair. He was one and a half in this picture...and LOVED wheeling.  He got his first chair at two.

Determined little toddler.



























After that he learned to step. He loved to be upright and this gave him the opportunity to kick balls.  That's one of his favorite things to do still. 




And he learned to step using a walker.  It was amazing to watch.

Determined little boy.

The first four years of his life he was able to progress and do more and more.  He seemed to always find his own way to accomplish things.  You see, his level of paralysis is T11 all the way down to the end of his spine.  Typically that means he should be paralyzed from the waist down.  He is partially paralyzed, so his level activity is higher, but unfortunately he is unable to bear his own weight.  His right leg is stronger than his left.  But that has never stopped him. He doesn't say he can't.  He doesn't act tired.  He just keeps going. 

And then last year happened.  



At the beginning of the year he had major hip surgery on both sides.  It was a twelve hour surgery and he had to have a blood transfusion the day afterwards.  It was hard.  But look at him...two days afterwards trying to give us a smile.  

Determined boy.




This is the giant green cast.  He had it twice.  The weekend he had this one taken off, he broke his femur.  And had to have a new one put on.  That was 12 weeks of crazy town.  He had further complications last year that pretty much put him out of commission for any type of Physical Therapy for the whole year. 

Two weeks ago we started with his RGO.

It's heavy.  It's hard.  We have to put him in it, be right there in case  he falls, and take him out.  He has to use a walker with it to hold himself up.  The walker he has right now in therapy is too small in the width and the sides of it get caught.  

AT. EVERY. STEP. 

Could you imagine that every step you took your leg got caught on something?  Why would you continue?  I'm not sure I would.  I'm pretty sure I would take the easy road.  NOT HIM.  The first session of PT, he struggled.  After all he hadn't walked for over a year. He forgot the movement of walking.  I wasn't sure it would even be something he could do.  But the second was way better.  He was having fun, and he was doing it.  But today blew my mind.  The therapist had to take a call from a doctor, so I stood with him while he was stepping.  I felt like I needed to hold on to him so he wouldn't fall.  He pushed my hand away and looked up at me and told me he could do it himself.  It took my breath away to hear that.  Then he stepped. and stepped. and stepped.  He figured out how to lift up the walker when it got stuck on his RGO and he figured out how to turn the walker and his RGO to go the other way.  ALL ON HIS OWN.  When the therapist came back, she was blown away too.  She told me he has always done things his way...and this is no different.  He doesn't walk the way you're supposed to with an RGO (you're supposed to lean back and swing your hips side to side).  He muscles through it using his upper body to throw his legs around.  AND HE'S FAST.  (considering he's in this crazy contraption)  But it bothers me.  This piece of equipment is not going to let him be independent walking.  He can't even get in it himself.  I am wondering how I can advocate for him to get the best piece of equipment possible for him to be independently walking.  You should have seen him...he didn't want to get out of the RGO...he was loving standing and walking and kicking the ball.  



This boy wants to walk.

In a bad way.

Is there any thing else for him?  Another piece of equipment that's lighter, that he can put on independently, that will allow him to walk when he wants to?

Because nothing stops him. 

Not even a spine that isn't formed all the way.

He does what he wants to do.




It's my job to find the tools to allow that.  God help me.  I have no idea what to do.  All I can say is thank you.  Thank you for giving this boy this huge dose of determination, courage, and strength.  He's six, but he works harder than some men I know.  And he works hard at doing things that most people just...well...do.  I can't wait to see what his life is going to be like.  What he will accomplish and who he will touch on the way.  And if any of you know an engineer, send him our way.  We need one to create a magical piece of equipment.