I'm laying alongside my son watching him sleep. That need for a bedtime cuddle hasn't waned eight years on. That's ok. In his own time, in all things.
Today it only took some five minutes until his breathing slowed to that comfortable long term rhythm, that one I can trust to allow me to spend time as me. Doing me things. Not looking after someone else. That is a gift I have to steal, to survive the guilt of not mothering someone, and doing something outside what I need, let alone want, to be doing.
Steady rise and fall of his chest and my thoughts along with it, rising and falling. The joy and the pride in having a child who is hands down the most wonderful human being I have ever known. That subsequent fall to know that mine is a life I will now forever spend fighting for him, fending off those who would belittle, discard, ignore, pity.
Fools rush in.
I wept again today thinking of how tragic it is that this beautiful, kind, gentle soul will be forever treated like shit by society. He does nothing but love. So few people give back what he deserves. I know what he brings out of people. I've seen it.
I've seen it a lot.
It's quite something to see a face light up when they catch his attention and his heart, the light of his soul shining all around him, like a visible aura, that if you were fortunate enough to dip your toe inside it would seep straight on in to you, to light up your days until your dying breath.
If we all could be so lucky. The lucky few, indeed.
I live with this child. I made this child. The pride! You have no idea.
But lately tears coming fast and furious at the ease in which society would turn him off into the wilderness of 'things we don't care about' - God forbid when he is old - and if he had poor health atop that third number 21, (which thank God he doesn't for now) that 3/21 - blasted thing which has 'othered' this remarkable person since he was conceived.
What a true tragedy that people cannot see past physical features. What a true tragedy that people cannot wait and see what a human being is like, who he becomes, before judging him? And who are we to judge anyone, anything but ourselves? We've no right.
The outright arrogance.
I wouldn't have judged anyone before this boy came into my life, but now, yes. Yes I judge. I judge because to some folks that 3/21 combination is so hideous and so aggrieving they'd shrink back in horror and grimace and do anything in their power to avoid welcoming someone like my son into their life. I know they're out there. I know, because I've seen them flinch just looking at him.
Imagine that. Imagine your heartbreak. Your rage.
"How very DARE you?" You say this. This mantra. Some days it's all you can do to not start swinging.
How?
You want to tell those people who shrink back to open their hearts to something different - to a journey that they didn't expect, something that would be difficult, yes, but slower. Somehow cleansing. They don't even see you, let alone hear.
All this, yet my son has only barely begun to scrub the ableism from my thinking. As I live and breathe it's nearly 9 years of him on this earth and still I don't get it. Still have discomfort around people with that same 3/21 (how funny that is a countdown now I'm thinking of it) counting us down to what? Humanity? Truth? Acceptance?
Fuck this. Really. Fuck it all.
His chest up and down, and I'm watching him, adoring him. The way he looks just like that last scan when I saw his nose and cheeks on some grainy printout and thought 'whatever the heft of the sword I must wield, I will swing it wide and true with you in my thoughts'. The battle since conception rages. And rages. And I rage along with it. It's not letting up, this anger.
At least I have a tribe now. There's that.
That stupid television programme and it's insolent, obstinate, obtuse production team believing - either for the party line or in an effort to make themselves feel better about being so outright heinous - copy/pasting their responses to everyone, claiming that it is their 'duty' (of all things!) to show a story line that reflects 'one of life's truths'. That truth that most people whose fetus has an antenatal diagnosis of Down syndrome will terminate the pregnancy. Because of a ghost.
But not really.
They terminate because they want a baby. But not one like THAT.
Fact.
Truth hurts, but it's 2020 and that, friends and neighbours, is where we are.
Truth hurts, but here's another truth - they have no duty but to the almighty pound.
And another - they are so disgusting and inconsiderate to the awfulness of what they are doing, they stretch a storyline that throws our kind, gentle, beautiful children into the abyss...
...over Christmas.
For ad revenue.
That is most certainly NOT what Jesus would do.
Back to those swell folk who don't want a kid like mine. I know this because I felt like that before we conceived my son. Before I knew any better. Before I had actually ever spent a single meaningful moment in the company of a human being with Down's syndrome.
That feeling lessened when I knew he was coming, yet still I was in denial. I didn't believe he'd have Ds, I didn't want him to have Ds, no way, not us, not him, no no no.
But he did. He does. He always will. 1:119. It could be something, it could be nothing. Upslanting palpebral fissures. Sandal toe gap. Echogenic focus. I'm sorry but...
How can words be so ugly when a person is so beautiful?
And I ask myself today, what the everloving HELL was I so afraid of?
To paraphrase something I read in a piece published in The Atlantic recently, when health care professionals build entire careers on the back of their intellect, it is little wonder they feel a certain way about human beings born with an inherent lesser intellectual ability.
That is near on everything and has shaken my entire approach to advocacy.
Few will come round. Not those who believe that looks are everything. Or earning potential is everything. But especially those who feel that intellect is everything.
But here's the rub - it's plainly not.
There are countless others who build careers on the back of how they care for people. They are the lowest paid members of society. They are the carers, the religious leaders. They volunteer to work in war zones for the UN. They clean up after raging hurricanes decimate third world countries, tidying things up with paper towels instead of launching them into faceless crowds like footballs for a cheap laugh.
These are my son's people. They are considerably on the fringes in the mind of society but they are actually the skin holding the body of society together, so that the blood and the veins and the guts don't pour out into the sea and drain into the earth's magma never to be seen or heard from again.
Those are my son's people.
This argument against allowing people like my son to even exist, it's fucking old, let me tell you. He's going on nine and it may as well be 89. I'm so tired.
Watching my son sleeping, I was also thinking about how if I had any other child in any other level of this ridiculous plane of existence, I would say 'jeez, I'm exhausted, what a hard day I had today'. And the other mum I'd be speaking to would probably do a bit of subversion, some one-upmanship to illustrate that she in fact was the more knackered of the pair of us.
But here, in the magical world of 3/21, I dare not say such things.
I dare not say such things because there is tutting. There is a hidden whisper behind the back of a hand saying 'well why did you HAVE him then? What did you expect? Surely they TOLD you what a mess your life would become...'
But it's not a mess because of my son. He is the only part of this life that is absolutely tidy.
There is overwhelming societal disdain, whereby instead of deciphering my exhaustion into 'you're a mum - you are meant to be shattered' there is 'I told you so'. Because my kid is DISABLED - there will forever be an unwritten, unspoken, didactic stating that his life has no value. That his mere existence is somehow destroying my own.
That is patently untrue.
What the truth is, is that I am a mum. I am meant to be shattered.
What the truth also is, is that I am shattered because this sword is too fucking heavy and I'm tired of swinging it. But I'll swing it.
I'll bloody swing it, alright.
____
It is important to note, somehow now more than ever before, that this argument for or against certain degrees of choice, timelines in which one could end a pregnancy, or whether they should in fact be allowed to end a pregnancy at all, etc., would force a human being firmly into the category of 'pro-life'. Most people discard the feelings of and challenges to the status quo from mothers like me because they immediately assume that because I 'actually!gave!birth!to!a!disabled!child!' I am rabidly pro-life and as such, anti-choice.
They could not be more wrong. I am anti-discrimination. End of.
But it needs to be said (and I expect this will change some opinions of me, and so be it, as I'm beyond worrying about much outside matters of my immediate family in this hideous day and age) I too made a choice thirty years ago, not because I'd have had a disabled child but because I was a selfish young girl who didn't want my life to be disrupted by any child at all. I ended a pregnancy at 19. A few friends know all about it. You know who you are.
I have owned my choice for more of my life than there had been prior to taking it. It was hideous, and tragic, and sad, and a desperate emotional loss.
But not ever would I suggest I lost that child. I dare not ever be so ridiculously selfish to disrespect those women who have endured actual, true loss by appropriating the language of loss, having consciously chosen to take that path.
I made a choice. That's entirely on me. I have owned my own choice for thirty years.
This is why I get so angry that these selfish fools are running around waving their hashtags through the air about breaking the silence. You want to break some silence, let's dance. Let's get fucking LOUD, sis. You've no idea what silence looks like until your kid gets shunted into a corner by the society who doesn't want him in it merely because he has a condition they want to eliminate.
(They want a baby but not one like THAT.)
And he won't be silenced. None of us will.
So break this.
This is why I've been raging. And weeping. And seething. And running, and running, and running.
Remember that, next time you see some stupid ignorant woman crying and wringing her hands that she 'lost a baby to Down's syndrome' when the reality is that she's just made a choice to end a pregnancy because she wanted a baby...
(But not one like THAT.)
It didn't take me 38 weeks to make my choice. Nor should it take any other human being 38 weeks to make theirs. As my mother says, with regard to taking a decision and not dawdling around on the fence - 'shit or get off the pot'.
It disgusts me that women will choose based upon disability but as I've said elsewhere if you really don't want a disabled kid I don't want you to have a disabled kid. That kid would have an absolutely terrible life with you as his/her mum.
Yes there's adoption, but that's not the sword I'm holding. There is another warrior who would die on that battlefield but it ain't me.
Down the choice timeline, equality is everything and if you are pro-choice but aren't in support of levelling the timeline across the board to 24 weeks, or up to 'unassisted viability outside the womb', then we are on different channels and you should take the last train to Clarksville.
If you're pro-life and reading this, I respect your choice to feel that way. That too, is choice.
If you think disabled lives matter less, please just go now.
To choose or not to choose, that is the question. The answer, in my life has been yes, and no.
My son is my world. My choice is my history.
My words are my voice and my voice is my soul. My soul is presently on fire.
I'm not sure when it'll go out so for today, I burn.
