It is safe to say I don't believe I know anyone who isn't currently teetering in some way. Sure people may be pressing back their shoulders, loudly announcing to the world that it's all in hand, I'm good, I got this, I'm still here, I'm still going, but naw, it's cutting deep and we are all wounded. I can see you bleed.
I can't tell you it will all be ok, but -
I embrace you from a (safe, social) distance.
I pass you a sanitised box of tissues to wipe away that dismay careening down your face. It'll stain if you don't wipe it off.
Trust me.
Where are we? Good lord, where on earth.
We are living through what has been a monumental catastrophe for so many but that which is utterly disregarded by their opposites.
This taker of loved ones, this culler of humanity, morbidly viewed as little more than an unnecessary inconvenience, a cancelled holiday, a missed opportunity to go out clubbing, drowning in why can't I watch my football team live? It's. So. Unfair. Why?
Because, WE.
WE.
That we are all in this together is not in doubt. The question is, who is going to smother those at the bottom in their efforts to climb out first? Who will launch themselves ahead, smearing mud across forgotten faces? Who will forget to drop a rope? Who will cry exhaustion when it is their turn to pull?
Because, WE.
I am bemused, to be fair, having had the luxury of years of experience within the Great Big Pity Party, blessed with my son, who is so much the same as his peers, yet always, always, quite markedly different. As a mother, you certainly don't want your life to be so different. But mine is. Hand on heart, some days that absolutely destroys me. Then I pull my head out of my ass and remember I chose to be a mother and my son is the best person I know. I remember that most days I'd take ten of him.
Still, some days I just CAN'T.
How many days spent feeling sorry for myself that my world is not like that of other people, that I have to spend so much time teaching my only child those skills other children just fall into, that I have to decipher, translate, interpret, all manner of body language, attitude, emotional adjustment, as a means of communicating in the absence of the spoken word?
But that is my job. I am his mother. He deserves every minute of my time.
How many years have I avoided writing some of the feelings for fear of the 'I told you so' posse?
Here's the rub: I don't give a shit anymore. You can't bring everyone on side. If any time in history has proven that, it is this time.
I pound the pavement and chew up the trails, questioning it all.
I smile, like the great Eliud in grief and pain.
I grin. I bear it.
I cannot claim it is always easy.
I CAN claim I love my son with a fervor you would never understand if you hadn't had a love like it. And nobody 'told me so' about that.
Still...
How very normal is this lack of normal? Ridiculously.
We haven't got out as much as other families, not ever. Because, just like celebrity, there is sometimes too much attention and you never know if it will be uplifting or a(nother) stake in the heart. I find myself endlessly more fragile than my toughened exterior may hint at, splintering so easily when someone shocks me out of my idealist positive approach with the reality check that most people think my life is probably less than. Just like they think that of my son. I'm not a fool, I know this.
You reading this, you too may think this. You're allowed. It's ok. Some days I may agree with you. Other days I'd slam the door in your face and curse at you til you were out of sight.
All about balance, in all things.
A blessing of this pandemic? Odd, but yes, there have been a few. The big one is the lack of encounters has all but eliminated the bad kind of attention. The only people in our lives the past year have been those who love us.
Isn't that bloody marvellous?
Still for us, this new normal is not new at all. This new normal only brings with it the crisis of contagion.
We are a DS family. We are a SEN family.
My son is disabled. I couldn't say that for years because I thought it was a dirty word, something to fear.
I'm not afraid of my son, nor should anyone be. Disability is not disaster.
What IS a disaster, is that this new normal - in the middle of a pandemic - feels so utterly, totally normal to us. It feels normal to us when everyone else on God's green earth is losing their shit because their world is so far off piste and it feels like it will never right itself.
My son has been othered for all time. We are isolated, we are separated, this is nothing new. Our world is myopic. Here, pop these lenses on. Welcome to the disability disco.
Isolation so ordinary but what IS new, if not this 'normal'?
What IS new, is the pace in which my ridiculous overabundance of patience is waning.
What IS new, is the fact that everyone, everywhere suddenly understands what our normal looks like. My God, I wish it would stick! I wish they would all FEEL it! Process it!
Remember it, when you are back in the club, the stadium, the playground with slides that only have steps made of rope.
And we are here wondering if we will be accosted by disdain on our next trip to Tescos.
Isolation is a reality for families like ours, for kids like mine.
I genuinely can't tell if I feel sorry for everyone on the entire planet who is suddenly feeling so isolated, or if it is actually quite liberating. It may be met with great curiosity as to how I can stay so perennially positive and optimistic during this hideous and difficult time.
And here, I'll tell you - it's because I learned just about nine years ago that there is no other way you can survive when the world will forever push you aside. Chin up, eyes on the prize. Keep moving. Relentless forward progress.
Today,
In your dismay and your horror,
In your darkened outlook and your fear,
In your desperate hope that one day soon this isolation will end,
I wish that your every dream comes true.
I know others - just like me - will too.
Because, WE.
