Disclaimer: There’s a bear in there. And a swear as well. There are people with games. And stories to tell. Open wide, come insi – …. OK, that’s all mostly bullshit. There are no bears or games, but there ARE most definitely swears. And a rambling story of sorts. If you’re not a fan of f-bombs then you might want to click out now.
So, September is Craniofacial Awareness Month.
I’m not going to ask for money, I’m not going to bore you with an overly earnest Public Service Announcement and I’m not going to ask you to wear or do something stupid on the premise that it raises awareness of people wearing or doing stupid things.
Compassion fatigue. It’s a thing. I get it. And I know that I’m not really selling it with sexy medical terminology like “microtia and aural atresia”and “hemifacial microsomia”, but y’all gonna take pity on me and grab a cuppa anyway, yes?
(Jesus, I can sit and read any old shit if I’ve got a good cup of tea on the go – even my own blog. You can do this!)
Anyway, before I had kids I had NFI that September was Craniofacial Awareness Month, and honestly could have given less than zero fucks either way. That’s nothing personal against anyone effected by this but it just wasn’t on my radar, the same way that World Turtle Day, Self-Represented Litigant Awareness Day and Condom Week weren’t on my radar back then either.
And then I gave birth to a child with a craniofacial deformity.
You know those children of mine that I never write about? (ha ha mummy blogger fail) Well, one of them was born with a congenital birth defect called microtia that has left him with a facial deformity and unilateral deafness. (I’ve also written about that here once before if anyone is interested).
He has no ear on the right hand side of his face, no ear canal and no inner ear bits (technical term), which also means he is deaf on one side and has to wear a special bone-conducting hearing aid. In place of the external ear he has a peanut-shaped piece of misshappen cartilage, and he also has a jaw deformity which makes his adorable little face lop-sided.
It’s quite surreal when you give birth to a child with a visible difference. There’s no greeting card for that, and people don’t really know what to say. (Here’s a tip: “Congratulations!” is a good place to start). No one at the hospital will hand you a brochure titled “Hey! So Your Kid Looks Kind of Different – What’ s Up With That?”, and there’s no chapter about it in all those pregnancy books either (if there was you probably skipped it anyway because THAT WASN’T GOING TO HAPPEN TO YOU).
It leaves you in a weird limbo-state.
No one at the hospital could even tell us why our son looked different, and what that meant for him. I had no idea if he was in pain. If he had any other associated medical issues. If it was just cosmetic (no) or whether it was something more involved (yes). The hospital staff didn’t even have a word for it at the time, and later I would realise that this was because microtia is incredibly rare. They had simply never seen it before.
So, tits-deep in the fug of antenatal exhaustion we fumbled blindly through this unexpected new development. My husband went home and threw himself down the google rabbit-hole using “deformed ear” as his only reference point, while I barely gave it a second thought as I paced up and down the corridor all night with a screaming baby who refused to be silenced #newbornpriorities #fuckyousilentreflux
Hubby was at home playing “Dr Google” while I was stuck at the hospital playing “Most Hated Person on the Ward” because those poor exhausted bastards and their new babies were all trying to sleep, and there I was – failing Motherhood 101 because nothing I did comforted my wailing child, even though he was my second and I should have known what the fuck to do. His appearance became a total non-issue as I strugged with more pressing aspects of the newborn stage.
Twenty four hours later I was sent home with a referral letter to the children’s hospital for a battery of tests and – finally – a name for my son’s condition. The letter came from the hospital and the name came courtesy of my super-googling husband, in lieu of an actual medical-type person who could impart that information to us. This is not a criticism of the hospital – they did the best they could with the resources they had.
At one point a midwife did ask if I wanted to see a counsellor to talk about my feelings or whatever, but I was busy squeezing colostrum out of my tit and into a syringe at the time, so I took a hard pass on that and kindly sent her on her way. I didn’t really know how I felt about it all at that point anyway, because I’d just had a frigging bloody baby. How did I feel? Tired? Fucking tired? Really fucking tired? Or some variation thereof.
The upshot for my son is that he is staring down the barrel of a number of different surgeries as he gets older: surgeries to reconstruct the outer ear, surgeries to implant sophisticated hearing devices and surgeries to correct his jaw deformity. We’re hoping that 3D-printed ears become a thing sooner rather than later, because it means he can avoid invasive rib graft operations.
He also needs to make his way through school and life as someone with a visible facial difference and a hearing disability. Children with my son’s condition struggle socially and academically, experience higher rates of depression and have to deal with dick behaviour from peer-aged bullies and insensitive adults on a daily basis. It’s a sobering thought as I send my sensitive little dude out into the world.
So that’s why I’m taking a short intermission from the inane rants I usually post to talk about Craniofacial Awareness Month, because no one really knows what this shit is like until they’ve been there – whether they live with craniofacial anomalies themselves or whether they are friends or family of people with a visible difference.
The month-long event is designed to encourage acceptance for people who have craniofacial differences; according to their tagline its aim is to get people to see that “beyond the face is a heart”. My version is kind of similar but it goes like this: “beyond the face is a mother you DO NOT want to fuck with if you are going to mess with her kid for being different”.
With any luck I’ll never need to intervene. Fingers crossed for my beautiful boy.