Redefining what is important


On Tuesday morning I got into work early but mentally I was not ready to get into the day as I was still reflecting on Reilly’s neurology appointment from the previous day.  I started surfing the net catching up on the latest news from around the world and then found myself googling ‘Rett Syndrome Blogs’. I have no idea what I was trying to accomplish with this search and truthfully it was almost no different then me typing in for I have done this numerous times in the past just to see the new stories out there about other families going through the same heartbreak and small triumphs in the world of Rett Syndrome and special needs.  It is interesting to note the change in available information over the years because of technology.  Reilly is going to be 8 in April which is hard to believe on one level but at the same time it is not really that long ago that we were in the phase of figuring out what Rett Syndrome was all about and what it might mean for her and us over the years.   There were very few blogs and websites available back then but now there are so many opportunities to connect with others, which is great.

On Tuesday I innocently clicked on one particular blog site.  I honestly thought that it would give me a chance to kill a few more minutes before I had to start my work day. I never expected in a million years that it would change my life and thus Reilly’s.   The impact was immediate, huge and overwhelming.   It is similar to driving along on a familiar rode with no cares in the world and you look down at your radio to turn the dial and then look back up but too late, you have just driven into the back of the car ahead of you.  I personally have never done that but have come close and the wave of emotion is no different than what I felt after finding this website.  The difference is that it took me a little deeper and I started balling. For those that know me I rarely cry but reading what was on this site broke me down.

Reason being? This blog site was about a young woman with Rett Syndrome but she WROTE all the posts except for the last couple for unfortunately she passed away this past August. Not only did this young woman write on this blog but she also composed music and wrote at a level that rivals anything I could ever think or write and I am considered able – mind and body.  For any parent who has a child with Rett Syndrome this is beyond huge and is quite overwhelming for almost all of our girls are written off as having a cognitive level of an infant due to their inability to express any form of communication.  Admittedly I too have dismissed Reilly as having an advanced intellect.   When people inquire about Reilly and I inform them she is non verbal they still expect her to be able to communicate. I don’t think they truly can grasp that she has no way to indicate her wants, desires and needs through any form of common communication methods except by following her eyes and really paying attention to where they land or trying to distinguish the different squawks or cries.  But this site changes everything! There is no question the road ahead will not be easy and in fact I am sure it will be painful for all of us but it is one that I need to go down for Reilly.

Thank-you Karly for giving me the greatest gift a mother could ever ask for – hope!  Here is Karly’s blog site that is a must read for everyone.

Deep down I know that finding this blog site was not a fluke or a coincidence but rather the Universe did its thing and attracted it to me with great force.  It is my choice whether I pay attention to the message but paying attention I am and then some.   Honestly finding this site has changed my life and ultimately will change Reilly’s. It already has.


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