Sunday, July 22, 2012

Fragile X Awareness Day 2012- what it's all about!

It's all about repeats.  It's about protein, methylation, and biochemistry that starts at conception and continues until the last breath is drawn.  It's connective tissue, gross motor, fine motor, muscle tone, speech, language, cognition, sensory processing, and anxiety.

Fragile X syndrome is the leading cause of inherited mental impairment.  FX is the leading known genetic cause of Autism.

Some days it seems like this-
It's about potty training at the age of 6 and amazing the doctors  because we have that when there is so much that we don't have.  It's about having no words, not even a true consonant at the age of 7.  It's about moving... constantly rocking and flapping and humming and spinning.    It's about 5 correct physical answers on a cognitive battery with over 300 questions.  It's about smells and textures and tastes and having days, weeks when cheerios and popcorn and crackers are the only things that are consumed.  It's about no sleep.  none.   It's about wanting to play, wanting to be involved, wanting to connect... and not having the words, the physical ability, the social know how to do it.  It's about no crowds, no buzzers, no bands.  It's about the never ending medication carousel.  It's about fear and stress and anxiety and pinching hands and tears... silent tears.

But you know what?  I'm learning.  Now, more and more, it's about this-
It's about the ability to try and try again and again and again and again, because failure is just a word that we don't believe in.  It's about falling and getting up over and over and over because life is not lived on the ground, down and out, it's lived snuggled tight and laughed out loud and tickled and prayed and storied.  It's about music, favorite songs to dance to, high in your daddy's arms . It's about kisses and hugs and finally, finally, finally a sweet kiss on your momma's lips.  It's about pats and games and chasing the dog.  It's about high fives and friends that know you and LOVE  you.  It's about buttons to talk and pictures to show.  It's about joy, row boat, water time and sweet smiles with your Grams and Grandpas. It's about wrestling and teasing your little brother.  It's about kissing your baby sister, and tolerating her kissing you too! It's about life, this life, right NOW.  THIS IS IT.  It's about taking what we can do, pushing the limits, rejoicing in success! It's about hope for the future!  It's about plans, dreams, and never ever, ever, ever, ever giving up.

It's about us.... all of us.  Our world, knowing and accepting, assisting and respecting.  It's about understanding and peace and including people of all abilities at all times in all things.

Tomorrow, July 22, 2012, is National Fragile X Awareness day.  Wear your green, tell someone about Fragile X, Remember Abraham and the thousands of other people who live a life affected by Fragile X.     Promise to include instead of ignore, to accept instead of criticize.  Promise to respect and to love.



  1. Beautifully written. I love the personal aspect instead of the clinical we hear all too often. Thanks for sharing. :)

  2. Love the way you wrote that! Abe is so lucky to be part of such a sweet family :)

  3. Love all ur words!! Very well spoken!!

  4. love, love it. Every word. So, so true.

  5. oh my goodness. thank YOU! i'm just stumbling across your blog today from a FB contact, though i'm sure our paths have or will cross b/c i have a son with FX. i'm crying. you GET it. you LIVE it. we have it. we deal with it. we need to LIVE it. thank you for sharing this.