Fragile X

We really like our genetic counselor.  I think she is fake, I mean, I don't think anyone can see her.  Only Matt, Carsen and I.  She is like an angel to me.  I know it sounds crazy...but she makes my life a lot easier.  I won't go on about this because my best friend said to me today, "you know, if you get too stressed in life you could have a psychotic episode!!!"  I laughed so hard when I got off the phone because some days that is where I feel like I am headed.

I was working on Carsen's four point positioning at the fitness center yesterday.  There was a nice mom and her two adorable (normal) kids that were pointing to Carsen's walker like it was something really cool.  I thought it was cute and said to her, "yeah, kids always state that they want one, but I tell them you really don't"  She gave me the dirtiest look like, "how dare you joke about that."  I giggled inside while she tried to teach her son how to play football.  She never spoke another word to me.  We finished up our therapy session and left.  Sometimes, I say things that totally come out wrong.  I guess I feel better when I joke about something when someone is pointing to my most important belongings. 

That is how I cope at hard times...

Back to our little genetic angel...She called me last week to inform me that Carsen's Fragile X results were negative.  Another one of those phone calls.  I am able to keep my heart rate to about 55 bpm when they call.  I can disguise my voice to sound as if everything is perfect.  I appear to be calm but really my stomach is telling me to chill out!  When our angel calls I have a million thoughts run through my mind.  Is this the day we find out why our son has cognitive and physical disabilities?  Is this the day we will be disappointed again that we paid thousands of dollars to be informed that another test was negative?  I am so sick of genetic testing I could puke. 

I googled Fragile X syndrome and realized this did not match Carsen's traits even a teeny tiny bit.  When do we stop testing?  When do we completely throw our hands in the air and really hand this over to the man in charge? 

6 months and counting...We will slowly start to find out the results of the X-linked mental retardation panel.  I am actually nervous about this test because I have a feeling it will be our last.  It is going to be a long 6 months!

I am the one who is Fragile these days...

It is Carsen who is amazing!!

Carsen trying to figure out the cool sounds inside my camera this morning!