Edit July 2025!
Well, three years.. didn’t expect that!  A lot has changed and a lot is in the process of changing.  Ben is now living in a residential setting, he is so far loving the vibrancy of the staff, all the attention and the range of activities on offer.   Read more...

Edit July 2025!
Well, three years.. didn’t expect that!  A lot has changed and a lot is in the process of changing.  Ben is now living in a residential setting, he is so far loving the vibrancy of the staff, all the attention and the range of activities on offer.  We are pleased they are already helping to develop his independence skills and help him prepare for adulthood but it’s very different without him in the house!  We’re hoping the next 12 months will bring more confidence and developments for him.  I’m also hoping that I get to branch out a little more in terms of work, leisure, family time etc.. but it’s still early days.  Watch this space!

Edit July 2023!  We made it to 365 :-) Ben is now 14 and a half and we also have a miniature poodle Leo who causes trouble and fun.  I'm loving having a place to record life's ups and downs and plan to stick around for a bit longer.. thanks for having us Blip!

This is a mini journal of life with my 13 year old son, Ben. I’m starting this now and hoping to capture the essence of our 2022 school summer holiday.
I love photography and the challenge of posting once a day, I did once manage 100 consecutive days but that was more than 10 years ago..
Ben has a rare KCNQ2 genetic mutation that caused neonatal epilepsy; autism; developmental and physical delays.. hence the journal title. The Haiku element is to persuade me to ‘keep it brief’ but it’s also a challenge for me to write in a way I have never attempted before.
I want to capture Ben’s achievements but I’m also here to highlight elements of the parent carer journey that are intertwined :-)

More info on KCNQ2 epilepsy can be found at www.kcnq2cure.org