Sam and I have been attending a virtual grief support group for bereaved parents on Monday's every 2 weeks.  I personally find it therap...

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...

I started to write a post the other night after I came across a picture of a child younger than Sonzee diagnosed with CDKL5 who was sitting....

I was putting my older girls to bed last night when I decided to ask each of them what they disliked most about CDKL5.  The younger one quic...

In parenting in general I have always tried to avoid using the words "I will never".  I figured eventually I would most likely be...

Whenever I find myself getting sucked into the trenches I try to focus on something positive, even if it is a reach.  There is always a fine...

It's been one of those weeks where life ran me over like a truck.  It's weeks like these where the regular stresses and dealings of ...

Less than a year ago I read a post on a fellow CDKL5 child's facebook support page that made my heart race and panic set in.  It was the...

With my three older children I visit their respective pediatricians one to three times a year and once a year my son has a routine cardiolog...