By Naomi Sirianni
Parenting: even without disability, we love them but damn we want our own time, right?
Or do we?
The long summer school holidays are always a pickle when it comes to prioritising and balancing (or juggling) work and keeping the kids entertained.
My husband and I share the load where possible and take separate holidays from work to ensure at least one of us is with our two boys.
Sunday was the day. The day I might have been counting down to or internally getting super excited for.
My husband was taking our two boys, the youngest with a rare genetic syndrome + multiple disorders, for the week to visit his parents who live regionally.
WOW… a whole week to myself; to not only work in silence but to just breathe. No meals to prepare, no hot cooking by the stove, no meds to remember administering, no bums to wash (yeah you know it!) and no Paw Patrol songs blasting in the background. Do we call this bliss or what?
Sunday night saw me smiling all the way to bed, by myself I might add.
You see whilst I adore my two boys, disability does get in the way, and it does make day to day life harder. I’m not afraid to say it.
Monday morning hit and time to get back into work after three weeks off, the productivity was through the roof with lots of catch up in play but there was no nagging for constant snacks or YouTube murmur in the background. What was this, I was strangely unaware of my surroundings.
I poured a glass of rosè and took to the back porch to watch the sunset. I could hear the birds and I could even hear the trees whistling in the wind.
I got what I was so desperate for.
Or did I?
Tuesday: third day in and I’m not loving it.
How could it be, when only a few days ago I was wishing them away. Oh dear.
Maybe my life needs the chaos. Maybe I’m now immune to the chaos.
I want it back. I want the barks and grunts of my non-verbal child. I want the rapid flicking buttons of a Nintendo Switch. I want to get hot and sweaty cooking adaptations to a spag bog to ensure all three of my boys (eldest, youngest and husband) are catered for.
What on earth has happened here.
I was so sure of myself, so sure I’d have the time of my life and it would fill my bucket and get me through till school starts again.
How wrong I was.
My little bubble with all its idiosyncrasies is my sanctuary. Not my own thoughts and company but the company of those I’ve been primarily caring for, for the last 12 years (13 if we count when I got married, hey).
My boys are my world, and I was very silly to think otherwise.
As a special needs mum, I know we talk about self-care on the regular. And yes, absolutely it has its place but perhaps for me and my journey, it’s one step at a time. One night away at a time, one uncooked meal at a time.
I will always live by the motto ‘You Do You’ (I even have etched earrings showing this quote) and every single one of us is on our own journey.
I’ll do me and wait at the door for my babies to return from their week away.
