Showing posts from June, 2015


Today is Monday. And today I am exhausted. After a couple of weeks of feeling like we were winning the battle against epilepsy, we had an epic fail over the last few days. I can’t describe exactly how draining this journey is; every single day is an unknown and the Lennox-Gastaut syndrome demands every ounce of our energy in caring for B. Up until now the most prevalent seizures B has had have been obvious. Big head or body drops, being flung backwards across the room, being unresponsive and vacant. Distressing to watch, and time-consuming to record, alongside the constant background decision making on what necessitates extra meds intervention versus what B can cope with. The seizures are so sneaky though. Once you think you have a handle on what’s going on, it all changes.

On Thursday B needed to be woken up- for a child who regularly wakes between 4.30 and 5.30 am bouncing off the walls and ready for the day this was highly unusual. More alarm bells started ringing when he couldn’t p…

Ode to B

Our family is quite different from those around we know See, usually each child gains independence as they grow Learns toothbrushing and getting dressed, and how to talk and smile Or maybe ride a bike, or cook, or run for miles and miles
Now B’s a rare and precious gem; unique I guess you’d say He’s almost eight years old but hasn’t spoken to this day He tries so hard to let us know what’s going on inside But sometimes it’s too tricky and he ends up way too tired
The memories of baby groups are hard to bring to mind I sat there smiling outwardly, while way deep down I cried. The other mums bragged proudly of their babies expertise And me? Well, I had nothing- it brought me to my knees
While toddlers started chatting, and copying mum and dad B screamed and roared and cried a lot; my heart it hurt so bad I tried all the usual parent tricks to try and help my boy But nothing worked (except sometimes a loud and flashy toy!)
As time went on the fog let up- we had a clearer view B was slow no matter what …


So, this week is rare chromosome awareness week, and I’m attempting a blog-a-day in the spirit of raising some awareness around the impact of a rare chromosome disorder on every day ordinary life with our everyday ordinary family.
I thought I’d start at the beginning, seeing as much of the focus on social media today is on D-day- diagnosis day.I can’t remember the actual day or time we received our news, but I do remember not having the first idea what any of it meant. And I also remember how I felt. There had been almost three years of appointments, therapies, watching my baby boy’s future unfold into an entirely atypical toddlerhood and fighting to get medical professionals to listen to my concerns in the lead up to D-day.
When B was born, he was dead. Clinically speaking. His Apgar score was one, and when he was placed into my arms he was the same grey-blue colour as a dolphin. Unfortunately due to all my babies being back-to-back, and the odd labouring pattern this brings about, I…