The age of three is a big milestone in any child’s life (with Big it finally meant we could launch her into the toys that had prevented her from playing with them – due to their having a great big line through the 0-3 option) but with Small, these milestones are different. At 3 – and not walking – he qualifies for a disabled parking badge and also an allowance to lease a car. The car is important as, as Small grows into not-so-Small, we will need a bigger car to fit in all his gear. Ultimately, our Ford Focus has got to go.
We talk, my forum buddies and I about the ‘benefits’ we gain through having disabled children. Think of the shiny new car, the free parking, the standing frame that’s so handy to balance the post on, not to mention the jump-to-the-front-of-the-queue pass you get at theme parks. Really, we say, what are we complaining about? We all know, we all know… we would swap it all in a heartbeat to bring back normality and erase the uncertainty from our lives.
Gallows humour is always present as a parent of a disabled child. It’s yet another of our coping strategies.
And yet. There are the most surprising benefits to be had from our disabled children. I have been catapulted out of my comfy two parent/ two children bubble into a whole other world, which can be truly surprising. Through being thrown up against the coalface of the NHS I have seen how amazingly well it works when it matters. Without a doubt it is stretched to its maximum and resources for long term care are patchy and under-funded… but when it matters, they are there. I have come across the most caring of individuals who care about my boy and want to provide the best support for him -and us – that they can. I have been staggered by their humanity and compassion. Just thinking about Small’s wonderful carer and how her actions have kept our family together, and made us happy, makes me cry. We celebrate the here and now, focus much less on what’s coming up in life. We stop, realise and take a breath when life is good. We mark it when we are happy. We sweat the little things less because at least we are all still here. And Small. Small is just happy to be alive and his delight at life – cliched though I know this sounds – is a lesson for all three of us.
Complicated Gorgeousness has written about this far better than I here: