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!
Dear Life,
Sometimes life is just hard.
Sometimes simple things like going to school or work or practice requires more effort than normal.
Sometimes you wish you could just stop.
Stop trying.
Stop doing.
Stop hurting.
But you have no control over any of it.
It rules your life.
It tells you lies.
It keeps you alone.
It silences you when you need to talk the most.
It keeps you in fear.
Fear is a dark and dreary wasteland.
To stay in this world, you have to push harder.
Fake it.
Every day.
Until staying becomes reality.
It's exhausting.
But it's necessary.
If you don't push away the lies, if you don't shine a light in the darkness,
You would get swallowed up.
Watching this battle, not being able to take it away,
breaks my heart.
Watching this battle makes me angry.
Watching this battle gives me hope.
Because there is a battle.
There is a fight.
And we will win.
There is no other alternative.
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.
When he received his first Box Wheelchair, his world was rocked!
