2014 was a tough year.
We had so many happy moments, but it was also a year of coming to terms with Charlie’s weakening prognosis.
The last few ‘percentiles’ passed us by this year – for example, Charlie is now in the last one- or two- percent of children as far as ‘walking’ and ‘talking’ milestones.
We’ve faced the transition from having a baby with disabilities to having a child with disabilities – much more visible in the community, and it comes with a whole new set of challenges.
I’m struggling to carry Charlie very far, she’s in her last months of squeezing into a supermarket shopping trolley, and she’s outgrown her pram and most restaurant high chairs.
We’d been waiting for an offer from a (very expensive) private education program for children like Charlie, but have recently been told – after three separate interviews and eighteen months on the waitlist – that Charlie’s needs are too high for her application to be considered.
Most ships don’t allow children in nappies or pull-ups into any of their swimming pools or spas – and this is one of the few activities that Charlie loves and engages in with the family.
So much for that plan, then.
By the end of 2014, I’d had a few breakdowns and cried many times on Michael’s shoulder and into my own pillow in the middle of the night.
I’m very aware that there are others who’ve had far worse years than we have, and that some families haven’t been lucky enough to make it to 2015 with all members present and accounted for, so it’s time to change my outlook.
2015 is going to be the year of ‘smelling the roses’.
I plan to make a concerted effort to cross each bridge as I come to it rather than ruining the preceding days with anxious anticipation.
I intend to continue to push Charlie toward her full potential and celebrate every gain at least as much as I lament every loss.
I’m going to celebrate the achievements of all the children around me – mine and others’ – without measuring them against the ‘what-ifs’ and ‘should-have-beens’ (this one, I think, might be the hardest).
I’m going to stop being ashamed that the news/a sad movie/a good advert/a moving speech/a cute puppy suddenly makes me cry – even though I spent a good 30 years being quietly proud that I wasn’t a ‘soft touch’.
Most of all, I’m going to try to learn the lesson that Charlie has been patiently teaching me for at least a year now: to truly live in every moment like she does.
From our family to yours, we wish you a year full of happy memories to reflect on in 2016 and beyond.
2015, here we come!
Is changing your child difficult when you are out and about?