My middle child who, I like to refer to as ‘fairy-fart’, ‘spider baby’ or ‘Beast’ is my ride or die. This kid is my animal loving, TV hogging, chore doing, laundry master. She is an amazing equestrian and is always up for anything. Recently she has become a very good little squash player and was […]
Often, I come across things encouraging people to live in the moment, suggesting people don’t dwell on yesterday and insisting we are wasting our energy worrying about the future. Depending on my mood and what I’ve been through that day, week or month, I either agree or feel completely annoyed at the sentiment. Like every
We start the day with medications and getting William comfortable and then move on to clean-up – and there is a lot of it after William’s night. William’s first stop is the bath. Once he’s clean and calm there is bed clean-up, bedroom/bathroom clean-up, more meds, tube feeding and managing his dystonia. There is a
6am hopefully – I’m usually jolted awake though. “Bear! Check the monitor. I can’t here him.” Bear is what I’ve always called my husband. Everyone else calls him by his first name. Maybe subconsciously I feel like he is triggered differently knowing it’s me calling for him. Bear quickly reassures me that the little human
William is his name and Dystonic Cerebral Palsy is his game. William suffered a brain injury just after birth – Infant Jaundice/Hyperbilirubinemia are what caused his brain injury and the official diagnosis is Kernicterus. My little boy is the apple of my eye but man oh man it has been a journey and will continue