Swimming Against The Current

How many of you know what 22Q is?  How many of you know what dystonia is?  Its likely that many of you only know these terms because you know me... or my son.  Do you know what they mean? What kinds of symptoms you get with them? Again, probably only because you either follow my blog, know my family, or have these things in your own family.  How many of you know what cancer is?  Probably every single one of you.  How many of you know what ALS is?  Anyone who has had faceook in the last month must know due to the ice bucket challenge. Dystonia is rare.  I had no idea what it was until I was diagnosed, about 7 years ago.  22Q is more common than you would think but still, I didn't know what it was until my son was diagnosed about 16 months ago.  Cancer is something we hear about, we see and we've learned about through awareness and knowing people affected.  It is so amazing how much support people get and how much awareness is out there to raise awareness for cancer and to fi

This morning I woke up to Cody tossing and turning and kicking me in the belly as he quietly whined.  It was 6am and I tried to get him to go back to sleep several times but he wasn't into it. I slowly went downstairs with him, trying to keep him happy and quiet as I got his feeding tube prepared for his first feed of the day, while trying not to wake up Hailey. Within 10 minutes, she was crying "mommy come get me" from upstairs.  I had to put Cody down, finish making his bottle and go get Hailey.  By this time, they were both crying hysterically. I brought Hailey downstairs and immediately she wanted to get dressed and have a "snack". I changed her, got her breakfast, finally set Cody's feed up and finally got to sit on the couch to watch the news.  "I want to watch frozen!" Hailey cried.  So, frozen it was at 6:30am for the 100th time in a week.  I managed to talk them into playing in the toy room by 8 and was ready to do my morning workout.