Monday, July 22, 2013

Happy Fragile X Awareness Day!

July 22nd, 2013... it's not your average Monday.  It happens to be Fragile X Awareness Day!!  In 2000, Congress declared July 22nd Fragile X Awareness day which makes today an eXtra special day in the lives of those living with a Fragile X Associated disorder.

This year, I was honored to work with State Representative Mike Unes to have July 22nd dedicated as Fragile X Awareness Day in Illinois too!

While I, personally, do not need anyone to make me aware of what Fragile X Syndrome (the leading cause of inherited intellectual disabilities and leading known genetic cause of autism) or a Fragile X Related Disorder (FXPOI, FXTAS) is - I understand that my fragile x friends and I are still in the minority and many people do not know.

Awareness is part of our everyday life.  It's part of being Parker and Allison's mom, Brad's Aunt, Caleb's friend... it's part of me.  Since our diagnosis over 10 years ago, being sure I could do everything I possibly could to make people aware of Fragile X, more understanding and accepting - I have (and will continue to).

I am beyond thrilled that all day my news feed has been filled with individuals posting information, pictures and blogs about Fragile X and sharing them with others (awareness really is that easy - just share something already written by someone else!)

The National Fragile X Foundation has made it easy for you!  First by posting a blog I had written, "Yes you can share that; 31 facts about Fragile X" various pictures and facts throughout the month and then today they not only shared an infographic but also have been releasing various Fragile X Facts all day long on their facebook page - all you have to do is go here, pick the fact you like (or better yet ALL of them) and click "share"

And in case you needed even MORE to be excited about, the CDC Featured Fragile X on it's website today!!

There have been many spectacularly written blogs today about Fragile X, including (but not limited to):

I'm not going to tell you that life with Fragile X is always easy.  It's not.  My children face challenges I wouldn't wish upon anyone but their lives are so much more than just the challenges they face.  Their lives are filled with love, compassion, hope, curiosity, beauty, excitement and so many more wonderful things.  They are my heart and soul.  They are the air I breathe.

What am I going to tell you is that there are things you can do.  People you can talk to. Friends you can make. Resources you can use. 

I am going to tell you that if your child is diagnosed with Fragile X, the news will take your breath away, it will hurt, you will have guilt, you are going to have to say goodbye to dreams you had for your children's future and for your own.  Your heart will break.

I am also going to tell you that you are going to walk down a path that thousands of others have walked before you and continue to walk.  A path where you will notice every pebble, every flower, every leaf.  You will hear more, smell more, feel more than you ever knew was possible.

Your eyes will be opened (even when you don't want them to be) to discrimination, cruelty and ignorance.  But that is not all they will see.  You will see with your eyes and feel with your heart the kindness of strangers, the incredible strength and talent of a really good teacher or para, the beauty that is often over looked in the everyday world that will go on outside of your fragile x bubble.

You will discover how time can and will stand still when your child laughs or says something, even if what they say cannot be translated by the outside world.

You will learn that hope and faith can be redefined especially when it comes to the future, research and treatment.

You will become an advocate, a voice, an awareness raiser.

You will meet the most amazing people, make the best life long friends from all over the world.

You will earn there was someone inside you that you never knew existed...and you will learn to love that person you have become and often step back in amazement.

The best part of all... YOU can do all of this, even if you don't have a child with fragile x or a loved one with a fragile x associated disorder.  You can do it by being a great friend, by helping raise awareness, by lending a shoulder by just being there.  Wearing green on days like today. Sharing a status.  Telling a friend.  Making a phone call.  Sending an email.

There is always something YOU can do....the question is, what will you do?

Happy Fragile X Awareness Day, my friends.  To learn more about Fragile X Syndrome please visit:

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