Stop the press.
Bring twitter to a halt
And facebook to a stall.
I have hurt my hand. Well my thumb actually. And it doesn’t even really hurt that much.
So like big wow. On toast. With knobs on.
Yet this sore thumb is quite symbolic. You see it is my first Gabe-related lifting injury. I am sure there will be more – heck I am certain of it. I was thinking of this twanged thumb this morning and hoists, shower chairs, downstairs wet rooms and adapted steps all flashed in front of eyes. Because although he is small at the minute (rocking a cool 8.9kg at almost three years) he will get bigger and he will get heavier. And unless the fairy godmother has took a wrong turn on her way back from a piss up with Cinder and her fella, his lack of mobility will eventually make him way too big for us to handle.
In a way Gabe’s smallness is giving us time. Time to let our hearts catch up with what our brains already know. Some friends with children the same age haven’t been given that option. Like some cruel game of hide and seek – they need to start adapting their houses – ready or not. And for a lot of them they are still deciding where to hide.
I have some time. Not much. But I know I am starting to get my head around it. That, for now, is enough. For me, it is these little reminders that inch me forward on the path to accepting THIS – whatever this turns out to be.
A lovely blogger called MrBoosmum at Premmeditations recently wrote a beautiful post about her son’s diagnosis of cerebral palsy. She spoke about how she longed to be at the stage of acceptance so she could begin to move on. This got me thinking a lot about my journey.
My road to acceptance is far from complete but with a child a year older than her boy, I am much further down the track. I mean I am not donning a “my child has a disability but is still a dude” badge yet (but I have made one) or dancing in campsites for complex children (oh actually yeah I have done that one and it was ace!!)
This acceptance malarkey has been subtle and slow. I don’t think it can be any other way. You don’t have to try to stress yourself out trying to fit a round peg in a square hole or even take the drastic step of completely re-digging the hole. It is okay to rest that peg on top of the hole for now and over time as nature slowly changes the soil around the peg it will start to fit better by itself.
My family and friends will probably recall how bereft I was when our neonatal consultant broke the news that this wasn’t just a heart problem causing a delay with Gabe. Her words “he will probably never have a mainstream education” broke me into a million pieces. I renounced everything she said and defiantly announced in between tears “I’ll show her – the miserable negative old cowbag. I’ll walk him into that room next time.”
I didn’t walk him in obviously. And he is about to start a special school education that not only do I accept but I am looking forward to. Yet I still stand by the miserable negative old cow statement (cause what a way to break something like that!).
The bubble of denial is there for a reason – to protect – yet we special needs parents are yanked out all too often before we are ready.
There were days when acceptance felt like an alien concept – something for the stronger mums and dads. The ones that kept the cars clean, did daily physio and embraced change with a positive saying and a smile. But I did long for it and this is why my skin prickled the other day when a lovely friend announced that people had said when Gabe was little: “she thinks he is going to get better!” Like they could see what I couldn’t. She meant no harm and she’ll be gutted I was upset by her statement but it was a sucker punch all the same.
If by this she meant that I thought he was going to get better and be bigger and take on the world. Damn straight I did. I still do.
But if by this she meant that I thought he would develop and hit milestones like the “other” kids eventually and be “normal”. No I didn’t, but I willed, hoped and prayed for it every second of every day.
To say I am in a different place right now is an understatement. But I got here by blood, sweat and tears (lots and lots and lots of tears). Each moment when……
- I fell into a sobbing heap mid shower (away from eyes and ears)
- That searing ball of pain in my gut knocked all the air out of my lungs
- I would leave a room full of people as tears engulfed (so what if your kid got a football medal! And yes, I was a cow!)
- I shouted and ranted at a room full of people (sorry!)
- I didn’t listen to friends’ conversations but was instead locked inside my own head, counting down days for test results
- I snapped at my husband and my little children
- I comfort ate until I felt sick
- I tormented myself by reading stories from google of children dying of brain diseases
- I lost a little bit of myself with every test, every hospitalisation, every procedure, every negative doctors’ conversation, everyday of sickness, everyday of failing to thrive, everyday of life feeling hopeless, cheerless, the doom and the gloom.
… they all led me down this road to acceptance. The dark early days of testing and the unknown are a living hell and I would say to anyone in them – just take a baby step at a time. Live in hope, plan for the future you expected, keep going anyway you can.
And one day (by surprise) you will get there. Nothing might change, but you will.
I am still moving forward but the days are so much brighter. I now know what optimism is again. There is a large part of me that can say hand on my heart: “you know what – the peg doesn’t quite fit in the hole but both the peg and the hole are good. Things will be okay. So far nothing has fallen down.”
|Gabe says: “Mamma all this talk about your pegs and holes is so boring!”|