“Butterfly skin” they said.
2 words that shook me and tipped me into a dark depression.
My Margot, my special.. special.. don’t like that word.
All I know is that my life would never be the same again.
Parenthood, the hardest job in the world just tripled in weight.
Urgh, how selfish.
I couldn’t pull myself out of it.
I started a list, all the things she wouldn’t be able to do or would need support with...
Applying make up
Shaving her legs
Carrying heavy shopping bags
Running in the rain. Running in general
Ballet lessons
Tattoos and piercings
Skipping a bath for a couple of nights
Camping
Athletics
Wearing high heels
Intimacy, would she be able to... start a family?
And then I thought of all the...
Confused looks
Judgements from outsiders
Abuse?
Having to explain myself
Not going out or taking her out
Not being a good Mum
The teasing, bullying, the blame.
I’m comforted by these 4 walls. Our routine.
I run her an antiseptic bath, wash her, dry her and pat her down gently, apply her steroid cream, moisturise her, apply barrier cream, wrap her in her zinc dressings, cut her clinifast dressings to size and put them on her and then dress her in her suits. Where’s the time for adventure?
No, maintaining her skin and her health is the priority.
Just about getting by and the confidence to get her out and then the one time you venture out, “What’s that on her face? Do you know what works wonders? Coconut butter. My work mate’s Auntie’s daughter’s friend used it and it disappeared, no joke” and all I can think about through my assassin’s smile is carving off this nitwit’s skin and lobbing a jar of coconut butter at her ignorant face.
No you don’t ******* get it, it’s not eczema and yes she could have had it worse but can I just wallow in my own selfish bubble for a minute?
Should I just remove myself from her life so someone stronger can step in, man up and deal with this? Stop being stupid!
The “safe” bubble deforms, another gift from the mutation she inherited from me. It no longer has sides to **** and push, just a swamp of black.
Then one dark period, it came to me.
How about I change my list and write down everything she can do easily without me?
She makes me smile on cue
She never lets her condition get to her
She is as bright as a button and educates me daily
She is bossy beyond belief, if I ever get sidetracked with me drowning in my narcissism, she reminds me what to do and when to do it
She is beautiful and I mean breathtakingly beautiful
Her laugh, the kind of laugh where you know she’s been around many more years then the mere 4 she’s graced us with
She has the confidence to strike up a conversation with just about anybody
She slips and falls but after the initial trauma, she gets up and keeps going
She senses my neuroses and makes me laugh by pulling funny faces
It’s through thinking of these things that I realise that if anything or anyone tries to take any of these most natural things away from her, I will be here. I have to be here. And all of this extra time I have to spend looking after her is a blessing. I don’t have to spend extra time with her, I get to spend this time with her.
She’s... we’re going to be ok.
Emma Stewart
I'm not sure if this is poetry but all I know is, this is the best way for me to express myself, my anguish, my daughter's anguish and if these words resonate with anyone I hope they can help reshape the dark thoughts that riddle our dark stages. Through his outlet, I find there's light.