When my oldest was a toddler she had these rubber squeaking building blocks that she would play with.  She would take the blocks and build a...

We are more than halfway finished with weaning one of Sonzee's seizure meds.  There is always the initial joy of watching skills return ...

I feel like this April, in general, hit me like a ton of bricks.  Deep down I know the reason is that we have been on this journey for 4 lon...

She’s out on the corner trying to catch a glimpse Nothing’s making sense She’s been chasing an answer A sign lost in the abyss, this Met...

Seizures have been consistently horrific since their debut (again) after the brief VNS miracle wore off back in July, however, this month it...

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...

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 ...

If you have been following Sonzee’s journey for a while now then you are probably aware that her biggest battle has always been her gastroi...

Whenever   Sonzee's   s eizures start to occur more often and increase in intensity, it is only a matter of time before my tightly wove...

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...

It's another one of the times while on this journey that I don't dare think "it can't get worse", but rather wonder wh...

Pretty much since I started blogging I have followed a similar routine when it comes time to write my posts.  For the most part, I wait unt...

I am in one of my negative phases of being a special needs mom.  I am sad that my child is constantly in pain and suffering, I am angry bec...

Often times my posts are written in my head while I am out and about as the random thoughts filter through my mind.  Some of the time I act...

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...

Dear seizures,  I have been penning this letter for some time, waiting for the moment that I had enough courage to express accurately m...

I have always been aware that this journey would follow a similar pattern to that of a grieving cycle.  I understand that the stages of gri...

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...

I am currently riding at the bottom of the coaster.  The part right after the steep drop and right before the track begins to quickly t...