15 Dec 2016
Cliff Richard 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. ‘Home Alone’ 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’ (the office is known for its creativity) 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
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.”
My son 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.
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
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, our Simple Stuff Works Christmas Carol.
It’s a great big shout out to all our families who will work so hard over the Christmas period and all those supporting professionals who will continue to work through the festive period.
From all the Team at Simple Stuff Works
Merry Christmas and Happy New Year
Rachel is a nurse, writer and mum living in Essex with her husband and three sons. Her life changed the day her eldest son was born and introduced her to the world of severe disability and life-limiting epilepsy. As well as doing laundry and picking up Lego, she blogs at Born at the Right Time and recently published her memoir ‘The Skies I’m Under‘. Rachel is passionate about sharing her family’s story to improve the care of complex families. Her speaking engagements include leading workshops with parents as well as training professionals.