Friday, May 30, 2014

Witnessing miracles

Dear Life,

I know I've been telling you all about Sofi's story, but I have something in my heart I want to share.

8 years ago in July we went for an ultrasound to find out if our baby was going to be a boy or a girl.

We left the hospital in a daze, with tears rolling down our cheeks and horror in our hearts.
Tears because our perfect little baby was diagnosed with a neural tube defect called Spina Bifida, Hydrocephalus, and bilateral club feet.
Horror because we were told one of our options was to terminate.
Our appointment was on a Friday, and the radiologist wouldn't even explain what the diagnosis meant. He said we would have to wait until we saw our OB. I called her office immediately but she was gone for the weekend.
How were we supposed to go forward without knowledge?
We went home to our boys, who clamored to find out if they were having a brother or a sister. We took them to the pool, told them they would be having another brother, but he was going to have health problems.
The rest of the weekend was a blur...
Monday we met with our OB.
She explained what Spina Bifida was in greater detail and reiterated our option to terminate.
We forcefully told her we would not be doing so.
We were told our son could be retarded (their words), might not walk, might have learning difficulties and his quality of life would be bad and there was a possibility of death.
We wanted our son.
We lived through that summer and fall somehow, searching for hope.
8 years ago, there were no blogs, no Facebook, no groups.
We found graphic and rather frightening pictures that scared us to death.
When Kumaka was born, he had major surgery to close his back and place a shunt.

For 4 years, he struggled with various health issues and surgeries.

He had such an amazing spirit. His smile was so beautiful and he was always happy.

Even in the hospital, he would thank the nurses after putting in an IV ( with tears in his eyes).

He was a fighter.
A warrior.

And once his health got better, he was given the gift of a special WCMX wheelchair.

He learned how to go to skateparks and shred with the skaters.

He learned how to play wheelchair sports.

He wheeled his first 5 K.

He surfed.

He became an athlete.

He became a student.

He is now reading.
And sharing his joy of life with his friends.

Looking back eight years ago, we never ever thought our son would do one of the things he is doing.
And he is in good company. Within his circle of friends, there is an author, a cover model, an actor, an actress, athletes of all kinds, an aspiring swimmer, a dancer..... And the list goes on.
These children are all AMAZING.
Every day there is a new story being told....
Many parents were told to terminate.
Thank goodness they didn't listen.


  1. I love your blogs. All the photo's are precious, but the Surfing photo had me in tears! Your family is soooooo special. Love you guys. Proud to be part of the SB family too xx

  2. I'm crying... you are such awesome people with an awesome kid!

  3. I sure love your little guy! And your story brings back so many memories for me.


I love to hear my readers comments...please take the time to tell me what you think!