When Sonzee was only 10.5 months I wrote a blog post about  lemons .  As I read it now I know it was one of those posts that I wrote to...

"2:30pm on Thursday, April 16.  We waited only 5 minutes for her to come in the room.  To tell us again they only tested 71 genes, to ...

It was a Wednesday.  I cannot remember the exact time, but I remember walking around the house while on the phone picking up toys and putti...

While I don't regret any decision that we have made for Sonzee, I do often wonder how a different one could have maybe, possibly, affect...

I can remember when Sonzee was newly diagnosed and my biggest fears were of her never meeting milestones.  If you had asked the me of four y...

Last night I heard one of the most heartbreaking stories that happened to another person and their family.  It made falling asleep even more...

Tuesday was the first time in a long time that I waited for Sam to get home from an activity with Sonzee's sister, so I could take litt...

"You'll get used to it" The words I heard at 3am a little over 2 years and a month ago when I first brought Sonzee into the...

It is 3:23am and little bear finished her seizure about 5 minutes ago.  She is back up to the 4ml dose of Zonisamide we attempted to give h...

I am always in awe of how the brain works.  I never really appreciated parts of its inner workings until watching a baby have frequent seizu...

Over the past two years I have found comfort in the most unlikely places, in a world I never knew existed, with items I did not know how to...

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...

So much has happened in our lives since Thanksgiving of 2015.  As I take a look at our "year in review" it is brings up a ...

As I sat down to write my post I could not remember the topic that I had been planning on sharing.  That happens more often than not these d...

As I packed up the house we rented and thought about the time we have spent in New York, I feel the tears swell in my eyes.  This summer was...

One of the scariest parts of being a mom of a special needs kiddo is having to rely on your gut for just about everything.  Relying on your...

Every time we make a decision, we wonder if said decision will result in a positive outcome.  There have been so many times along this jour...

I try to shy away from controversial topics when writing my posts on Sonya's Story.  My intentions are to never insult a reader, fellow...

One of the best things about this blog is that it allows me to go back to a specific time and see what my actual thoughts were at a specific...

When you study a specific subject matter for a lengthy amount of time, you become extremely knowledgeable on that topic.  The same can be s...