Thursday, July 18, 2013

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 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


  1. As I said before, "I am king of the world hear me roar!" Keep going after the things that you want in your life Kumaka you'll go very far with your I can do this attitude. I know that I have never met you but I have to say that just reading about you makes me proud of you. You do so many things that others would look at get scared and back down, but not you. Shine baby shine!

  2. My son has spinabifida he's is 6 months but, at his little age he has redefined spinabifida in so many ways! And I remind him everyday that if God is with us who can be against us! It gives me so much hope to read all of your posts !!! Every time I see him and his little feet I wish I had a way to help him get there.


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