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 dance we do every day to keep up with our lead partner. William is the lead and, we follow by assessing and trying to meet every need.

His choreography is different every day so we do our best. If we are rushing he tells us, if we are lagging behind he tells us, if we aren’t feeling the rhythm, beat, lyrics and daily genre – he tells us. Thankfully, we have become better partners over time and can anticipate the dance genre pretty early in the day.

Dystonia is no joke and although it can be managed to some extent with medications, it is a movement disorder that comes and goes more quickly than the weather systems on Vancouver Island.

Dystonia is triggered by everything, yes everything! Happiness, excitement, pain, hunger, boredom, dislikes, smells, overstimulation, noise, the list goes on, so we do everything from ballet on a good day – although every muscle is engaged in order to have a graceful day, to a fierce Paso Doble on more difficult days.

I’ve heard that it takes at least 5000 hours to become a master of your craft. Well, I have definitely exceeded 5000 hours dancing to William’s beat and I’m nowhere near a master – parenting is THE most challenging (and rewarding) endeavour.  Add in a splash of ‘special’ and I challenge anyone to become a master.

Challenge accepted!

~ Keely

Keely is an author and advocate for children living with disabilities. She lives on Vancouver Island in beautiful British Columbia, with her husband, her son William who has cerebral palsy, her two daughters and several four-legged friends.