Tuesday, August 19, 2014

Be the voice!

Tonight I had planned on putting up the pictures from our little family vacation last week to OCNJ. But, that will have to wait, because there has been a change of plans. Tonight, I need to write because I have way too much on my mind to even think about anything else.

Without getting too specific and naming anyone in particular, a very sad story was brought to my attention tonight. I was playing puppets with Anthony in his playroom before his bedtime, when I received a text. The text message stopped me in my tracks, and as my eyes grew heavy with tears I struggled to catch my breath. Someone that I know, knows someone who knows someone (ha, stay with me here!) who recently found out they were expecting a child with Down syndrome.

In the world I have been living in lately, that would have been the end of the sentence. Maybe it would have even been followed with a "wahoo, isn't that great?!" Honestly, everyone I have come in contact with lately has had such a positive attitude about Down syndrome. From the people I surround myself with, to the families I deliver Beautiful Beginnings baskets to for welcoming a new baby with DS into the world. It has all been so easy, such a dream. Everyone is happy and excited about these beautiful children.

Sadly, that wasn't the end of that text message.

"and she is terminating."

Boom. Reality smacked me in the face.

That statistic that I have talked about before: 90% of mothers who find out they are pregnant with a baby that has Down syndrome will abort, it came to life tonight.

It's not just a number, its real. 90% of these babies are not getting a chance at life because they have an extra chromosome.

I feel physically sick, like I was punched right in the gut tonight. It's something I just can't seem to wrap my head around. Why would this poor baby, this sweet child that only wants to be loved like any other baby, not be granted a chance at life?

It's sad to me that not everyone knows how amazing these children are. Not everyone is educated on the current information about Down syndrome. Most families that get the testing done are fed negative after negative information about Down syndrome. They are told just how horrible their lives are going to be, how challenging it is, how much can go medically wrong, how their child will not amount to anything great. Lies, lies, lies.

Yes, there is some truth that not everyone has an easy road medically with Down syndrome, there are some hurdles and some tough days. But, you take them as they come, and continue on with your life. Think about it.. everyone is fighting a battle of their own, no one has it easy! So, how is it fair that these parents are told a laundry list of things that MIGHT medically happen to their child, when that isn't the same for every other expecting parent? Other parents are not sat down and told "well your son could some day need glasses, he may get sick, he may break his leg, he may have a hard time in school, he could not be good at sports...." And why are they not told that? ...Because it is just ridiculous! Yes these things may happen in life, but they may not, and even if they do it wont matter because you will still love your child unconditionally. So, why is this okay when parents are given a diagnosis of Down syndrome? These scared and vulnerable parents are brainwashed into thinking the beautiful baby they created is less than perfect and not deserving of life.

My mind is racing, going in one million and five different directions at once. I'm heart broken, and frustrated at the same time. How can this be real? How can someone not want a baby like my sweet, perfect son?

All I know is that I lost it. I have not cried that hard in a very long time. I just hugged Anthony and told him over and over again how perfect he is.

The thing that really gets me is that I couldn't do anything to save this baby. 90% of these babies don't have a voice, but they deserve one. We all need to be that voice.

I feel as if I am more motivated than ever to go out and change the way the world views Down syndrome. I want to educate nurses, families, hospitals.. everyone... on just how WONDERFUL life can be with a baby that has Down syndrome. I couldn't imagine life without Anthony, he makes me smile every single day. It pains me that this mother will not experience the same happiness that I feel because of my son.

While I can not change what has already happened before, I hope that I can impact in some small way what will happen in the future. Even if I change the mind of just one family, if I save even just one baby it will have been worth the battle.

Please help me to lower this disgusting statistic. Share this blog, and hopefully we might just reach someone who needs it.

I decided to put up one beach picture of my handsome boy! It was such an emotional post that I needed a little happiness from my bubby!