October is Down Syndrome Awareness Month. I hope that by knowing me and my family, you will learn that people with DS are more than just “social, happy, loving…” but are just like you and me, human. The past year has taught me so much about what is important in life, stereotypes aside, DS is a diagnosis not a label. More than 90% (yes – that’s ninety percent, you read it right) of the world has decided that a fetus with DS doesn’t deserve a chance at life. Now that…breaks my heart.

So, with that, a few things that I wanted to share to make you more aware during this month that is so close to my heart. The following words are written by writers who have brought me much comfort:

The “R” Word – Spread the Word to End the Word [1]

“And please, if you do anything this month—make efforts to stop the use of the word “retard” and “retarded” in your family’s vocabulary. Comparing even your own absent-minded actions to a word originally intended to classify individuals with mental disabilities is incredibly hurtful to the families who love someone with special needs. I hear it every time it’s said–in conversation, on television, when people don’t even know I’m listening.  I know you’re not talking about my child, and I know that you are kind and accepting of others’ differences.  I understand it takes a while to dispose of a word that has for so long been accepted in our society.  But know that it stings to hear that word.  It stings to have that painful part inside you that’s on alert to defend your child flare up and remind you that there’s a bad word that people use to make fun of your beautiful, wonderful, capable child. Please think about that.  Talk to your children about this word and ask them to confidently stand up to their friends who use it.”
– Kelle Hampton, Enjoying the Small Things

Having a special needs child was my BIGGEST fear about becoming a mom, that’s something other people can handle. Not me. No, I can’t be THAT family, the family that everyone stares at. But when you hear that news, that unexpected, dream shattering news…all you can do is remember a few of the things so perfectly written by Jenni Catron:

“When Your Dream Becomes Your Worst Nightmare by Jenni Catron, Leading in Shades of Grey:[2]

  • You are not your dream.  While it feels like your whole world, you are more than your dream.
  • Don’t let the death of your dream define you.  Don’t let perceived failure crush you.  You are stronger.  You are still extraordinarily gifted.  Don’t let this moment in time stop you from continuing to be all that you are called to be.
  • Own what you can.  What can you learn?  How can you grow from this?  Let this be a stepping stone to something greater.
  • Go ahead and cry.  You need to mourn and let yourself wrestle with the emotions.  It’s okay.
  • Breathe deep and surround yourself with the people who love you dearly and unconditionally.  This is a moment to remember what matters most.  Your dreams will come and go but remember what really gives you life.”

When you have a child with special needs, it’s like joining a club that no one chooses to join, but grows to love being a part of. You learn to look past that label slapped on your kid before he is even handed to you in the hospital, you learn to love celebrating the little things even though it is months after other babies achieve those same milestones, and you learn to trust that God knows what He’s doing when he sends you your “worst nightmare.” Because your worst nightmare, can be God’s biggest blessing.

I hope that this has opened your eyes to some of the things that you may have never thought about, and that maybe, just maybe, you would think twice before making fun of someone, staring, or using the “R” word. And the world we live in may not think that a person with DS can get a job, get married, live on their own, change the world… You’re entitled to your own opinion, but who am I to stand in the way of another person’s dreams? Because my kid…my kid’s gonna dream big.

[1] Kelle Hampton, “October”, October 1, 2012, http://www.kellehampton.com/2012/10/october.html, accessed on October 1, 2012.

[2] Jenni Catron, “When Your Dream Becomes Your Worst Nightmare”, June 28, 2012, http://www.jennicatron.tv/when-your-dream-becomes-your-worst-nightmare/, accessed on October 1, 2012.