Today marks day 4 of CDKL5 awareness month.  It is a month I have been lucky  enough to honor over the 3 years of Sonzee's life.  The en...

On Sunday morning I placed Sonzee's little brother on his tummy for a little workout.  Full disclosure, I don't do it as much as I ...

Oldest: "Ema can I play with Sonzee in my room?"  Me: "Yes, just be careful when you push her in the chair not to get her...

For the past two summers I have created a list of "attempted goals" in my mind that I wish for Sonzee to achieve.  I always tell ...

Sometimes I wish I was a better, stronger person.  The type of person that so many special needs parents are.  The type of parent who is co...

It is the second week of February and this will be my third official post of the month.  I would like to say it is because I do not have mu...

A mom posted a picture in the CDKL5 parent support group last night of when her daughter was born with a caption referring to how she wishe...

Sometimes life just sucks.  There are times when it's not humanly possible to actually be fine with how things are going.  So many times...

I am disappointed, but not surprised.  I assumed it would only be a matter of time before her little seizure freedom vacay came to an abrup...