There is a truth, universally acknowledged, that SN parents are never honest about how they really are.
We are generally not fine, and we are far more than just tired.
Day to day life is a chaotic whirlwind of appointments, therapies, pad changes, bedding changes, laundry, tube feeds, medicine prep and stock checking, mixed in with laughter, quite a lot of cursing and more than a few tears.
For those of us fortunately enough to still be able to work (largely thanks to the sacrifices made by our loved ones giving up their jobs to be carers) trying to keep all the plates spinning and not crashing down is more than a bit tricky and we don’t always manage it.
Others don’t necessarily see the reality behind the smiles, and don’t realise the effort it takes to just keep getting up and doing the same thing day after day.
Regardless of our loved ones challenges, none of us asked for this life for our children or for ourselves.
Grief is always present even if it isn’t always visible or being felt sharply at that particular moment.
We adore the very bones of our children, each one beautiful, perfect and miraculous in our eyes. Love does a lot to mitigate the pain but it doesn’t change our reality.
When Sam was a baby I thought I knew what it was to be utterly exhausted.
The constant getting up at night, comforting, feeding, changing… but it would end soon enough so I chose to revel in those moments at 3am when I held my tiny boy close and rocked him back off to sleep.
Many years on and things haven’t actually changed that much – he doesn’t have night feeds thankfully, but disturbed nights are the norm.
Eight years of broken sleep wears you down. His Dad and I know this will continue for his lifetime.
And we do it gladly, because he is ours and we are just thankful he is alive and safe.
I cannot remember what it is to not feel tired.
One day I will find a solution to this chaos; cloning may be an option, then at least there will be more of me and Sam's Dad to go round – although I’m not entirely sure the world could cope with that x