Yesterday was a really tough day.  It was one of those days where everything just compounds on top of one thing after another and you are le...

It feels like it has been forever since I last sat down and allowed myself to take a deep breath.  I decided even though I am exhausted from...

3 years 5 months and 11 days ago Sam and I made the "controversial" decision to start our then 7-month-old baby Sonzee on her firs...

I was scrolling through my Facebook this week and there was a little girl who is similar in her presentation of CDKL5 as Sonzee, and she is...

This past Monday and Tuesday we celebrated Rosh Hashana (the Jewish New Year).  On Monday morning Sam and I debated whether we would be brin...

There was a post over the weekend in our CDKL5 support group of a mom of a 10 month old who was recently diagnosed.  Change the date by 3 ye...

I know one of the harder parts of this journey is acceptance.  While I have experienced brief moments where I am content with how things ar...

I do not know the specific amount of times I have uttered the words "I quit" over the past 4 weeks.  I have actually perfecte...

I am not a fan of gambling, chalk it up to not wanting to lose, whatever the underlying reason is, I just don't care for it.  There is ...

When Sonzee was first diagnosed with epilepsy and then shortly after with CDKL5, I would only bring up CDKL5 as the reasoning behind he...

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...

I can clearly remember how Sonzee was 2 years ago when she was close 5.5 months old.  Her diagnoses of CDKL5 known to us already for a litt...

I gave myself a pat on the back this week after I was up in the middle of the night and looking back over the past year’s video posts that ...

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...

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...

The thing that I love about fairy tales is that even though you know they are not real, you cannot help but smile and think about how amazi...

It is Monday afternoon and I am exhausted.  It was yet again another sleepless night with little bear and her constant screams of pain.  It ...

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...