Monday, June 8, 2015


When Sonya was first diagnosed with CDKL5 among the thoughts that entered into my head was instant worry that Sonya would not really be an active participant in life.  That she would not be aware, not respond, not know she was even alive.  The thought suffocated me.  I cried thinking she wouldn't know who I was.  I cried for myself that we would go through the day to day motions of life and that would be the extent of it...just mundane motions.

I remember hearing from other mothers who's children have a CDKL5 mutation, that I should not give up on Sonya, that she was there, inside, and aware.  They shared stories of what their children did to demonstrate they really were cognitively "with it".  It was very reassuring and I have to admit it was pretty much the only thing that took me out of my funk.  I set a goal for Sonya, for myself rather...that I had to figure out how to find a way for Sonya to show us herself.

Every day Sonya works so hard with improving her physical capabilities.  She kicks her feet and tries to bear weight on her arms.  She lifts her head up high or at least attempts to.  You can actually see her giving it her all.  My favorite part of watching her work is her reaction to being cheered on.  She gets so proud of herself when the cheering gets louder.  She rests her head and cries when she is exhausted.  She lets us know her feelings.  

What I have also learned about miss Sonya is that she knows all too well who is working with her.  She has figured out how to play the system.  Today Sonya had her aquatic PT with Mr. Mike.  Mr. Mike is awesome, he adores Sonya, he makes her work hard, but Sonya has figured him out.  Mr. Mike may look like a tough guy, but he does not like to make baby Sonya cry.

Sonya knows if she as so much whimpers Mr. Mike is going to change her position.  She will totally play Mr. Mike and it is so cute to watch.  Don't get me wrong, Mr. Mike will push her and make her work little muscles to the max, but he is much softer than her ema.  It is my proof that my baby girl is there! 

I am so glad I did not throw in the towel and give up on her before I even gave her a chance.  I am so glad to see Sonya "come out".  We must never let the diagnosis of our children set limits.  Sometimes that is easier said then done. No matter what, we must always listen to our children, because in some way, shape, or form they are always communicating.

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