Monday, August 16, 2010

And the world comes crumbling down.

I’ve been around many other families that have said they’ve lost friends and family after the birth of their child with Ds. I remember thinking, wow, we must be really lucky, everyone is still here for us. That was about 6-7 months ago.

Now Ethan is a few days away from the big ONE.
What a blissful year it has been. This miracle baby, that was supposed to be severely MR, and not do this and no do that before his 1st birthday. I throw my head back and laugh. The medical community. How can they know it all. How can they know it all about this child so divine.

But throughout the year, we’ve had a few downs. Not because Ethan wouldn’t do this or wouldn’t do that, but due to ignorance from family and friends and coworkers.
I’ve always tried to make it clear about how I felt about certain things. I hoped they somewhat got it. Got it enough to respect me and my son. Whether they truly understood it or not, just RESPECT me.

I’ve come across  awful prejudice throughout this journey.
I’ve had a coworker say to me that she did not give a FCK… how are you going to sit in front of me, a mother of a child with special needs and TELL ME TO MY FACE, that YOU DON’T GIVE A FCK. Does this woman have a heart… DOES THIS WOMAN EVEN HAVE A SOUL! Dear LORD, I pray for this woman! Lord, I cried so much after that moment. It was my 1st incidence of hate after Ethan was born. I felt so hopeless, I felt that if this is what my son has to look forward to, to hateful people like this, this poor kid doesn’t stand a chance in this world. I cried, Lord, did I cry! At that very moment, I just wanted to give up.  I just wanted to go home and take my kids and just live under a rock. Untouched by this hateful humanity.

Instead, I prayed. And I faced another day.

But now, I see how this life I once knew, with all these people I once knew, I now see it crumbling down. With people’s choice of words and people’s choice of actions,  I have been able to see  who really is there, and who really isn’t.  Many people, who stand in front of me, whose physical bodies stand in front of me and support  us, yet inside they are not even close to caring.

I can be in a room surrounded by family and friends, yet I feel so alone. They can’t possibly know me. They won’t even listen to my pleas for respect!

 A few days before my son’s birthday, I wish I could be feeling extreme happiness, instead I am full of so much sadness.  Sometimes I become angry at myself for feeling like this. And I know when you aren’t in the situation, the situation doesn’t faze you. I guess I was hoping that Ethan touched many lives by his 1st birthday, especially those lives that share some of the same blood as his.

I am very thankful for the new friendships in my life. Those who have cried the same tears in their lives, those that have held their child in their arms and cried many tears of fear, as they fear how will this cruel world treat their child, when ALL parents regardless of ability, want the best for their children. But when the world is already cruel to children just like the very child you once grew in your womb, the very child whose life you nourished from your own breast, the child you kiss goodnight  every night… it damn near kills you, just to think your child WILL BE FACED with prejudice.

And HERE I AM! Trying to make a freaking difference in this freaking world, but my words fall on deaf ears! I feel so freaking hopeless at times! And when it’s your OWN family and friends, or the very people you have to see everyday, that DON’T GIVE A FCK (just taking the words from the coworker) it tears me up, into a gazillion pieces…  How do I expect total strangers to respect people like my son, when those you surround yourself with don’t even care.

And you can call me SENSITIVE, and call me a DRAMA QUEEN, heck call me whatever the hell you want to call me. I am not shutting up anytime soon.

I am on a mission.
You are either with me, or you are not.


  1. BIG HUGS TO YOU!!! And I am sorry you feel like you are losing friends and family, but all I can say is I hope you have room for this big new family you have grown with me!!

  2. totally understand. We have gone through the same things. Hugs.

  3. It's an awful feeling to hear stuff like that! I've never had anyone say anything spiteful to us, but just reading the comments of strangers online, it is enough to send anybody into a tailspin! Check out this website - I love how it redirects the pain and grief that we encounter with disability and teaches me how to hope for something greater. I hope Ethan has a fabulous birthday! Hugs to all!

  4. People like that don't even respect themselves! It is true that family can be the worst critics...but remember the only reason u have to deal them is because they are family! continue to be the strong in your face female i met ! Ethan wiil learn to tell them to Fuck off too! What matters MOST is the Love from his immediate family.and those that will respect and love him...cuz we are out here!

  5. I'm with you, so so with you. I have family, once so very close family who lives next door who no longer associate with us, who have never met my Grady. My attempts at peace have come with no reciprocation, the silence between our house and all of theirs is deafening. I am so with you.

    How beautiful is your son and mine, made in the image of God. He is there to lift us up, and he will do just that when we stay focused on his word. Happy almost birthday! sending virtual hugs!


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