Shakin Stevens and Slade are unashamedly blasting out from music systems around the country. The usual suspects have decked their homes with enough lights to be seen from space.  ‘Miracle of 34th Street’ and ‘It’s a wonderful life’ are scheduled several times over the next couple of weeks. Simple Stuff works have made a goat looking ‘Sian Angel’ and it’s far too warm for snow.



It must be Christmas.

Like many celebrations, Christmas causes me to reflect. To think about this life I’m living and those I love.

A complex Christmas

For a complex family like mine, Christmas too is complicated. Just the gift list alone makes me infinitely aware of the multitude of people needed to make our lives function.

I’m so thankful for the carers who’s alarms are set for ‘silly o’clock’ to help care for my son. For the teachers who not just spend so much time but their heart and soul into their work. I’m grateful for the school transport and support workers who decorate buses and are adored by our whole family. For the numerous therapists who listen to my endless moaning and always do their best, even when cuts make their job so much more stressful. For the pharmacy that know my voice when I call with a request and the seamstress who under charges me every time she’s adapts Sam’s clothing.

Life is so busy and too often I don’t take enough time to thank those who make our world go round.

To All of you

Thank you

It isn’t just the number of Christmas presents, it’s how different our lives are compared to others. When choosing a gift for my other two sons, it is a matter of whittling down all the options. For Sam I (not so quietly) dread being asked what to buy him because the answer is inevitably, “I have no idea.”

Sam will open gifts on Christmas day but he won’t really get it. He’s likely to be upset by the change in routine rather than delighted with anything ‘new’. With heightened expectations on one day, comes the increased likelihood of disappointment and frustration. We are learning not to try and do it the same as everyone else because it can’t be done. We have to work out our own traditions and ways of celebrating that work for our complex, unique and wonderful family.

So, since I haven’t properly embarrassed myself since I put a picture of my face on Arnold Schwarzenegger’s body, I thought I would lighten your day and give you an early Christmas present. As a special treat, here is my own version of The 12 Days of Christmas.

The 12 days of a Complex Christmas

Thanks to David Stanley at the Music Man Project for the accompaniment.

(Don’t worry I won’t give up my day job…)

The 12 days of a Complex Christmas Lyrics (shortened version)

On the first day of Christmas my diary screams to me

A visit to the GP…


On the twelfth day of Christmas my diary screams to me

Twelve Thank-you presents****

11 drug dose changes

10 Teacher’s targets

9 Nurses nodding

8 OTs tutting***

7 Physios flexing

6 Carers cancelling**

5 sleepless nights

4 changed pads*

3 feeding tubes

2 toilet chairs

And a visit to the GP

* we only get 4 in a 24 -hour period (I know of others it’s even less)

**we have wonderful carers who only cancel when they have to

***OT’s only tut at me when I lift – instead of using the hoist

****I buy LOTS more than 12 thank you presents but that was as high as the song goes.


So, there it is. What would your complex Christmas carol include?

Have you had any genius gift ideas that you can share? I love to hear your ideas.

A shout out to all those who don’t get a holiday this Christmas

Merry Christmas and Happy New Year