It’s December. The festive season (or whatever you refer to it as) is here. It’s absolutely in-your-face, unavoidably, here.
I really pity those who truly despise this time of year.
You can’t even hide away in your home for fear of checking social media or switching on the TV and having tinsel coated pigs in blankets pelted into your face.
Me? I’m a wreck.
I am forever oscillating between hopeless grief ridden despair and determinedly optimistic.
“We WILL find our own way” one moment but then the next moment, buckling under the immense pressure I put on myself, and the strains of day to day life.
Christmas is a fantastic opportunity to socialise, form traditions, and explore super sparkly sensory play.
However equally; it is also a time of nostalgia, reflections, loneliness, illness, and… last but certainly not least… comparison.
With each seasonal obligation, I’m forced to find a way to “make it work”.
I nervously navigate my way around the shops trying to look past the scooter she can’t ride. The advent calendar she can’t open, eat, understand… enjoy.
The irritating elf guy that parents tirelessly position and photograph each day to post on social media and show their child for… erm. You see, I don’t even know what reason.
The truth is I sort of presumed he wasn’t for us, and also seeing his smug little “I didn’t do it” face was enough for me to write the idea off immediately.
I mean, he’s monitoring kids’ behaviour during the day but then paradoxically practicing frowned upon behaviour himself when everyone else is asleep? Anyway. I digress…
As always, special needs parents deal the hand they’re dealt with great innovation and creativity.
I see parents make their own advent calendars with little prizes that their child can enjoy.
I see parents fundraise and campaign to get their child an adapted bike (you know, the ones that cost about 10x more than the other bikes… as if carers earn anywhere near the amount their full-time working peers do).
This all takes extra energy reserves, extra time, and extra money – something that actually many parents don’t have.
Their ability to continue to find that reserve is something that we should all admire, celebrate and respect.
Sometimes these extra efforts work… and sometimes they don’t.
We operate on unmet expectations and uncertainty all of the time but still always find that glimmer of hope that our efforts will prove worthy, and this gives us the drive to keep on trying… to capture those smiles of those little people we love the most.
The social media feed is awash with hot chocolate drinking children, families whose children would sit through and enjoy a trip to the cinema, and so on.
Even worse is scrolling through all of this from a fold out camp bed in a children’s ward in hospital.
So many of my attempts to make her happy somehow feel like a punishment to her, or something she must endure.
It’s forever playing the game of “if we don’t try, she’ll never like it” and sticking to what you know works. I want to expand her horizons, but not take her too far out of her comfort zone that we do some damage.
I’m not sure my child knows what Christmas is about yet. Every year I think maybe this year.
But then another year passes. I internalise my jealousy when I see a child half her age talk about father Christmas coming down the chimney and instead choose to smile at their adorable innocence and excitement.
I don’t mean to sound cynical – Like I mentioned earlier, I’m sad, but also bubbling with positivity.
Rising and diving between the two is actually exhausting and I wish I could just feel okay with things and not have to constantly analyse and process a huge spectrum of emotions and opinions.
I just want her to be happy. Happy for her won’t be the things that made me happy as a child.
It won’t be the things that make a lot of people happy. She doesn’t have a Christmas list. If she did it would be to be swung around and bounced until she shrieks with joy.
It would be lots of music only videos on YouTube (very specific ones, don’t get it wrong!). It would be wandering round places and showing her different things (of course, with music on).
She doesn’t ask a lot. At all.
She isn’t materialistic. Or greedy. She wants her loved ones… and a good data plan.
We have an upcoming family meal. It makes me feel guilty when occasions are centred mainly around food. She doesn’t eat. Food holds no interest for her. Nor does being in one place for any length of time.
I’m forever torn between doing what people do at Christmas, and wanting to just shun it all in favour of whatever seems easiest, even though I know I’ll yearn for what others have and take for granted.
My family are amazing though; they’ve chosen a venue that goes next level over the top at Christmas. The decorate everything. Not one inch goes un-baubled.
I am hopping she is in awe of the setting and that we can help her be part of the event by showing her the sensory delights… with of course all of her loved ones around her… and again… her music and videos!
We WILL make it work.
I need to remember that in life it is what it is. If we pile on too much pressure on ourselves then we are guaranteed to crumble under the weight of the expectations and ultimately break down when things don’t go how we want.
I need to learn to be grateful for every little success, every new activity enjoyed, every day got through that she can fall asleep worry free.
For Christmas all I want is some new socks, some strong coffee, and memories with my family – whichever way they are achieved. I need to focus more on the current moment and not future moments.
People always say “all that preparation and then it’s over in a day”, and it’s true.
All the planning, all the worrying, why didn’t we just relax and enjoy the build up? Why compare ourselves to social media.
We all know that Facebook, Instagram, all of them… they aren’t true representations of people’s lives. Instead of comparing our lives to the moments people purposely select to share, we should shut our phones down and focus on what really matters.
We should be helping those who can’t afford a Christmas; helping those who are alone at Christmas. It shouldn’t be a time of comparison, greed, competition and anxiety.
It should be a time where communities come together to celebrate our many differences, accommodate and validate each other in every way we can, and work together to enjoy life and improve it for everyone else.
I am of course talking about the social and commercial aspects of Christmas.
I don’t mean to discount the actual religious element which is of course the basis for the whole thing. But I wanted really to talk about how it is for Special needs parents and our families.
Wishing everyone a hospital free, happy time. If it can’t be hospital free time, then I wish for you to still be surrounded by those who matter most. It is after all one day out of a whole 365, take it easy.