Wednesday, April 20, 2016

Destination Prom... Chapter 2 The Viral Reality

The fact that "Chapter 2" is coming after other entries that followed "Chapter 1" is exactly why the book so many people want me to finish is not yet complete ;-)

Here we are... prom week and I am backing it up to where it went viral. Yes, a couple of months ago (life has been so busy!).

When I posted the video of Rylee asking Parker to prom, I thought it would be seen by our family and friends and, of course, members of the Fragile X Community. A limited viewing. I was prepared for that.

Within a few hours, the video on my page started to spread like wildfire. I text Rylee asking for her permission for me to change the privacy settings to "public" and watched the "likes" , "comments" and "shares" take off, right along with my anxiety.

Everyone was excited, which warmed my heart. However, the anxiety-filled pre-mutation fragile x carrier mom in me was also on the verge of the first of what became many panic attacks. This... this video being viewed by strangers was of my son. My son who I protect with all that I am. I was letting this very vulnerable moment of his be viewed everywhere not knowing how people would react. I couldn't control if they were nice or if they were not. As exciting as it is, as much as I LOVE to raise awareness, it's scary as hell to put a very private moment of your child out for the world to see knowing how incredibly cruel people could be.

Would the world see the amazing heart and inspiring friendship that Parker and Rylee have? Or would they see a boy who is overwhelmed with difficult to follow speech and start to drop the word that makes me cringe (the r-word) while making fun of him and leave cruel comments?

As the shares started, I followed each one who's privacy setting allowed me to.  I spent that evening in tears - GOOD TEARS - from incredible things said by both people I knew and by those I do not. From members of our local community to the fragile x community to those who are Parker's peers - my heart swelled with the amazing support and love I was witnessing. Here is just a handful of the incredible ones I saw from his peers.

 It was good, it was more than good - it was amazing - my heart was so happy. I was starting to breathe a little easier. Fragile X family and friends from all over the world where sharing the post with incredible words of support and pride.

Rylee's family was pretty proud too :-)

Just as I was starting to breathe again, the most unexpected thing happened. I wasn't even a little prepared for the notification I received early one morning where my friend, Amber, tagged me in a video shared by the incredibly inspiring Facebook Page " Love What Matters " and the flurry of activity that followed.

After a "head's up" to Rylee that the video was going viral I held my breath as the shares and comments started. I read through each one (that privacy settings would allow) - my heart was touched so incredibly. I knew I wanted to save these, for her, for us, for a reminder to every parent who is part of a special journey that there are amazing people out there who not only care but are incredibly touched by the journey we are on.

Believe it or not, this is a narrowed down version of the ones I was able to see:

These... these really got to me :-) AWARENESS and reminding families they are not alone on this journey!

Of ALL of those shares - that didn't even include the ones of the amazing FX family, friends and community I am part of.  These are all people I did not know prior to this going viral :-)

It doesn't stop there - if Rylee ever needs a reminder that she's an amazing girl, or Parker needs a reminder that there are people who believe in him or anyone needs a boost... it could be found in the comments - again - there is no way I could share them all but here are some you'll enjoy!

As of 4/19/16 the video had a total between my orginal post and the Love What Matters Post of: 

18,324 "likes" 

That's some pretty incredible Fragile X Awareness and inspiring friendship from one kind heartded girl who presented a tie to her friend and asked him to prom - seeing him for who he is and not the disability that challenges him.

That is what life is about. Seeing through the challenges people faced and appreciating the person they are inside. When they are unable to express it, getting to know them without the words to guide you to see their heart and appreciating and accepting them as the amazing individuals that they are.

The world could use more Rylee's... and Parker's <3

We are 3 days away from prom... and more ready than ever.  Thank you for being a part of our journey - stay tuned there is more to come! 

**Parker was born with a genetic disability called Fragile X Syndrome. Fragile X is the leading cause of inherited intellectual disability and the leading known genetic cause of autism. Fragile X has been in our family for at least 6 generations yet we had no idea until Parker was diagnosed in March of 2003. Please take time to learn more about Fragile X Syndrome and all fragile x related disorders at 

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