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.
Dear Life, Have you ever had a conversation with a small child when all of a sudden a very deep topic comes up? UH OH. And you say a quick prayer as you delve into that topic with this child....hoping your answers are enough. Because lets face it people...just because we are parents DOES NOT MEAN WE HAVE THE ANSWERS. I know...I just said that out loud. *we don't have to tell the kids that, though! Today I had a date with this kid before his theater class.
We were talking about Sofi, and why her mommy gave her up for adoption. I told him that her mommy couldn't take care of her, so she did what she thought was best for the baby. Then Kawika surprised me. "Mom, what does it mean to terminate?" I caught my breath for a moment. Ok.....here goes. "Terminating a pregnancy is when a mother decides she doesn't want her baby and the doctors give her medicine and the baby dies." "Mommy, why do doctors tell mommies that it is ok to do that?" (My kid was full of really hard questions today) Well son, women fought really hard to be able to make choices about their bodies, and everyone has the right to end a pregnancy if they want to, even if we don't believe that it is right. "Mommy, why can't the mommies stay pregnant and then give their babies to another family?" (Can you believe this...my ten year old is saying these things!) "Doctors have to tell parents when they see something is wrong with the baby. Sometimes people think that the baby will not live a good life, that the baby will not be able to do a lot of things. Sometimes people think that is the only option they have." And here is where it gets golden people.... "Mommy, a doctor can't tell how the baby's life is going to be. I mean, look at Kumaka. He does everything he wants to do. He's happy. He does more than I do! People should know that their babies can do whatever they want to do!" I kissed his face....and I cried a little...hearing such simple truths...such wise answers....coming from a ten year old boy. He amazed me today. And really gave me a lot to think about. I thought about all of our Spina Bifida friends. Each one is unique. Each one has interests in different things. And if the given the opportunity, each one will be able to achieve anything. There's the flipper, the writer, the extreme athlete, the poster boy, the fearless one, the runner, the actress, the associate film producer, and the list goes on. If you heard these names for other children, you wouldn't think anything of it. The parents of these children were told that their children would not be able to be productive....that they would not be able to do things that other children do. And sometimes that's the case. More often, they just do things differently. And sometimes different can be a pretty awesome thing.
