Clouds, May 2010

Clouds, May 2010

Saturday, September 3, 2016


Typically it's flattering when people re-share something you have shared. Wouldn't you agree? Especially when you put something out in the land of social media & you say, "Please feel free to pass it on!" Strength in numbers, right? The virtual web via which all of us are connected can be powerful.

Of course sometimes this is positive & other times it is not so positive.

One day last week, approximately a minute after I shared something on social media, my words were captured & then shared again. They were pulled from their original source, taken out of context, & assumptions were made about the root of the circumstance.

I realize I am putting this out there in the middle of a holiday weekend which will significantly reduce my audience, but now is when I feel like speaking up. I am grateful for the person who I was able to confide in regarding the details of this situation, & for their honesty in explaining the most likely source.

I am very open about our journey raising a child with fragile x. I believe SO strongly in awareness... I wear it on my wrist, I display it on my vehicle, evidence of our efforts show all around our home, & most importantly I hope I radiate this awareness from my heart.

But this time my vulnerable words were stolen from me & quietly shared in private. I may never understand what the source was trying to accomplish. (If it were something in our favor, I wish they would have come to me first so I could have helped?)

But just in case my words have ever caused any confusion, here is what I am trying to accomplish:

A happy, productive, meaningful, safe, & fulfilling life for my son. I vow to ensure that famous smile of his never fades.  

Sometimes I receive praise for the way I handle myself & I do believe I have earned that. Other times I am emotionally drained & simply fearful about the future. But as I have said before, we are beyond blessed to have the support of people who truly keep us standing. They are as important to us as the air we breath. They are everywhere in our lives-- friends, family, home, school, doctor's offices-- both within & outside of the fragile x community. The metaphorical web via which all of us are connected is certainly powerful, too.

As a fellow parent I feel practically beholden to the ones who help make such a positive impact in my son's life.

I hope this sets the record straight.

Anyone who is confident that I would agree their heart is in the right place, please do feel free to share this. 

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