Chance is the name we gave our beautiful son. We wanted him to know exactly what he meant to us. He is our chance to become better people, our chance to learn and to grow, our chance at learning how to love unconditionally. This blog is dedicated to our first son. Our hope is that he will read it when he is older and realize just how much he has always meant to us.

Sunday, August 14, 2011

Where's the humanity?

Maybe it's because i like to torture myself. Who knows.
I've found quite a few posts created by other moms on Spina Bifida Kids that approach the subject.
Insert synonym.
A few of us, yes myself included, have ventured into the depths of the "Termination for Medical Reasons" board. Why do we do this to ourselves? A lot of reasons.
We want to help those who may still be on the fence by providing our stories.
We want to see what the other side of the coin looks like - we could have been there.
We want to know what the other members of the TFMR board thinks of this diagnosis.
I could go on, but even i can't pinpoint what makes me browse this board for Spina Bifida related posts.
But i'm sure i do it for the same reasons that i Google news and articles about Spina Bifida.
The biggest reason is to obtain knowledge. I want to know what could lie ahead for us on the journey.
The other reason, i am ashamed of myself to admit, is to read the comments underneath these articles.
The comments that are written by masked and anonymous members who would never dream of reading their text to your face.
The Internet is the "information highway" and unfortunately, that information can come from any person who knows how to peice a sentence together, even an uneducated and poorly thought out sentence.

But i did it again today. I don't know why. I will never understand myself.
Because when i think i can't lose any more of my faith in humanity. When i think all hope is lost for us. I read something, or hear something, or see something, that makes my hope and my faith sink a little lower.
And here i didn't think i had any left.

When i read comments under Internet articles on Spina Bifida, articles written by sad human beings, i am always, always, always disappointed.
Similar to the Termination boards on Babycenter, i read how our kids are a burden, and we show we love them more by putting them out of their misery.
I hear we are selfish parents for putting them through a poor quality of life and making them suffer through endless surgeries.
I read how this world is full of too many human beings, and those that are "broken" should not poison and contaminate this society with their "handicaps" when there are too many people here already.
I could feel my lip curling up in disgust just having to type that last sentence, knowing i was basically copying and pasting a real opinion. Actually written by a fellow human being.

How did we become like this?
Is these comments normal thinking? Or are they random thoughts from sad, sad people?
I hope the latter.
Along with praying to God every night that he continue to bless our family with all the gifts we have been given, I pray to Him, that please, please can He show the world what they are missing.
Show the world God, what Spina Bifida really is.

Spina Bifida is my son, Chance.
It's the beautiful baby boy, sleeping next to me in his boppy with a blue blanket covering his precious body and his chubby cheeks pressed up against the pillow.
It's the baby boy that my entire family can't get their hands on enough.
It's the baby boy who's smile is by far the most gorgeous site i have ever seen, and whose laugh can take me from despair to elation in a split second.
That's what Spina Bifida is.

I've been nice this entire post. I've tried to be respectful of other's opinions.
But as i've said before, this is my blog, and if you can type your poluted thoughts for all the world to see, i think it's only fair i offer my completely biased, over emotional and uninterrupted  thoughts on what i think of your so called opinions.

So here it is.
To all the people in the world that think they are more worthy of being here because they are more "normal" then my son who has a birth defect.
My son is 100% perfect and made EXACTLY the way he was supposed to be.
He is not a burden on society or on our lives or ANY of his family's lives for that matter.
He will have a FANTASTIC quality of life because i will see to it, if it's the last thing i do, that he is the happiest, most loved little boy on the face of the planet.
Each surgery he has been through, and will have to go through inevitably in the future, make him 100 times the person you are.
And lastly, if i were to EVER meet you in person, and you were to tell me that YOUR child who is healthy and "unbroken" is better then MY son, if you were to tell me that children like mine will not contribute to society as much as YOUR kid, that our kids' healthcare costs too much to make their lives WORTH the life of YOUR KID and that we should have just "called it quits" when we found out about their condition, i will make it my personal mission in my life, to make yours a living Hell, for their is no greater rage in this world, then the rage of a mother who has been told by some low life, pathetic, ignorant peice of trash that their child is not meant to be here.

So for all of you that feel that way about babies and children and teenagers and adults and the elderly.
Go jump off a cliff.

And that's the end of my rant.

Oh wait, let me present to you the love of my life.
If you think this child doesn't deserve to be here, you don't deserve to be in the same room as him.

Friday, August 12, 2011


So Chancers is 3 1/2 months old! Where does the time go? I look at him now and try to picture how he looked the very first time he was shown to me in the operating room. The first time i got to kiss that little cheek. Nothing will ever compare.

He was fitted for his splints and if i do say so myself he makes splints look ADORABLE. These will help stretch his ankles so he is able to point them past neutral. Something called "plantar flexion". His ankles already look better, i wish i had before and after pictures to compare.

I contacted his urologist and based on the cathing log i brought in, we are to continue cathing twice a day until his next Spina Bifida clinic in September.

He is smiling and sometimes even laughing! He loves to talk to himself and he has gotten great at focusing on objects and people. He moves his little legs like CRAZY not to mention his little toes too! We feel so blessed that he seems to have function everywhere. His head control is awesome, very close to perfect - although sometimes he does look like a cute baby bobblehead :) He is so crazy smart, i am truly lucky to be that boy's momma.

Some new things about Chance -

We figured out he is going to be a TV watcher like his parents. He LOVES cartoons - it really helps the cathing experience go smoother!

He is 13.5 pounds of chunky baby! Up to the 45th percentile. I stopped BF-ing so he is full of formula.

He's gotten to the "pick me up or else" stage and very rarely is happy laying down by himself. But we are more then happy to oblige :)

He wakes up 0-1 times a night now, depending on his mood i guess. Helps Mom and Dad get some sleep though!

I still haven't gotten over my obsession with taking pictures of him, probably never will. I swear that kid is going to be a model because people taking his picture is all he's ever known! And because he's so handsome of course.

So here are my/his latest accomplishments.

Love you Chance! <3