But today there is a point to what I’m going to say…
As Sam's Mum I live in a safe little bubble when at home with Sam, his Dad and our various critters.
It’s a warm, safe, loving place where the world doesn’t matter, milestones don’t matter, and where our reality is normal rather than something to be pitied.
When we’re home we’re spared the experience of having to gently explain to concerned passers by that we really are OK, and thank you but no an ambulance isn’t needed.
We’ve got this, honestly, but thank you so much for asking.
Most people are genuinely lovely and as we discovered over Christmas although to us the sight of Sam in a seizure is common place, to others its pretty shocking to witness.
Especially when the oxygen mask or emergency medication has to be deployed.
Having Sam has made me see the human race in a different light I suppose.
There’s so much love and kindness in this world, so many people who don’t know him or us who want to help in any way they can.
But what they can’t see is the hidden depths of our souls, the place where the darkest memories are buried as deeply as possible.
Where old wounds have never fully healed, and the pain of memories we wish we didn’t have burns deeply into our very being.
I wouldn’t wish those memories on my worst enemy, but they are mine and are part of who I now am.
Then there are the other heros of the tale...
Sam's really rather remarkable extended family of grandparents, uncles, auntys, great uncles and so on.
But it is his grandparents who this post is really about.
I don’t know why I didn’t see it before, maybe it was Dad's passing that put things into sharper focus, but watching my lovely Mum with Sam today I realised that she doesn’t have that safety bubble that my little family of me, Sam and J have to retreat to in times of crisis.
She lives with my brother's family and their two young children, both of whom are healthy and well, thankfully.
But for her, everytime she comes to visit and sees the difference in Sam to his cousins the pain is fresh and as sharp as it ever was.
I think people tend to forget about the grandparents sometimes…not everyone is as lucky as we are in having all grandparents in full support and active in the lives of their disabled grandkids.
But those hidden wounds are shared by OUR parents, who have to watch their grandchildren suffer, but also their own children as we battle to be the best advocates, therapists, carers and parents that we possibly can be.
So this is a shout out to the unsung heroes, the grandparents who are there in any way they can be for their children and grandchildren.
Because sometimes its far harder to be in a supporting role, than the lead in the show.