Saturday, 12 January 2013


I’ve been chasing my tail this week.

There haven’t been enough hours in the day. I’ve had a pile of freelance jobs to complete, time-consuming mounds of wet beds to deal with; the rude shock of school/nursery hours to coach my offspring into; the usual child wrangling, cajoling, and patrolling; and the endless loop of re-run conversations and jobs that are needed to keep a relative with dementia on an even keel. 

My husband is on the last day of his four day shift today, which means he’ll be around to help for the next four days. These are referred to as his ‘rest’ days, although he tends to let out a bitter, hollow laugh when he explains this to people.

But today has been a good ’un. 

I’ve been sprawled on the floor for much of the afternoon, constructing warped shapes out of hundreds of Magnetix pieces, then putting together a wooden train track with my boy that resulted in a record number of disastrous but entertaining rail crashes. 

Meanwhile, my daughter, quickly losing interest in our building work, constructed her own entertainment.

She's been upstairs in her bedroom, reading a book and intermittently singing along to songs on the radio. I know this doesn’t sound like anything to write home about, but it is, it really is. She took herself off up there independently, she worked out how to turn the radio on on her CD player (which she’s only listened to discs on before now), she found a station she liked (some God-awful commercial one) and lounged about. Like teenagers do. 

Prader-Willi Syndrome can overtake the life of a child and their parents. It can become the be-all and end-all. My daughter has her idiosyncrasies and her struggles. Today, she was mostly just a teenager, chilling out.

Music is Smoove & Turrell - Hard Work, from the Craig Charles Funk & Soul Club compilation CD, which arrived in the post this morning and provided a rousing soundtrack to my day.

1 comment:

  1. *Entertaining rail crashes* Within seconds all the carriages are back on the track, the dead brought back to life in the blink of an eye and we do it all over again. Note to self: must get train set I've been promising myself for (at least) the last forty years.