From the minute you wee on that stick, or multiple sticks, in that heart pounding moment you wonder who or what is going to happen to you. You, as the individual, is suddenly growing another. Your body, your mind, your relationships, your identity. You know for sure that change is a coming.
No matter what happens, having both experiences, you are changed in those three minutes.
Susie Mesure has written an article this week which feels like a ham fisted attempt to neatly divide mothers into tranches, and a review of what being a “mummy blogger” seems to mean to her. To be honest, I struggled to find a point, and mostly it boiled my p*ss. I found it patronising and divisive, praying on those insecurities we feel at the moment we lose our pelvic floor and our sanity.
More than that, between alpha, tiger, smug and fml mums, there is no mention of the children. That they who shape us are less than our reactions. What’s that expression? Be kind for everyone is fighting a battle you can’t see.
But I’m thankful of it as a platform. A moment to consider what I share and portray, what I tidy the edges on, filter and gloss. I’ve been nominated for this mumsnet award you see, for Best Campaigner, and whilst I am honoured and flattered, I wondered how I ended up there. In that camp, with amazing women who campaign fearlessly and doggedly. I probably should have tried to be funnier. What I don’t want is for Best Campaigner to feel like shorthand for Really Sad Story in our instance.
One of the things that I’m having to come to terms with now, after RD’s death, is that I’m no longer a mother of a disabled child. A parent carer as I so often would have to fill in on forms. That now, in a snapshot, the years of day to day care; nearly 6 years of broken nights, tube feeds, medicine measuring, nappy changes, therapies, have gone. It was and is a badge of pride, all that my beautiful son taught me. So now my identity feels so altered. And we bought a puppy so that we had more broken sleep and conversations about poo.
It’s made me realise what I’ve campaigned for. And will continue to. Disability and all I thought I knew petrified me when pregnant. When I realised that I would have 100% responsibility of the child inside of me; but what if that was lifelong and unending? There was no reason to think it would happen to me, to us. But it did, and I will be forever grateful for all it taught me. Patience, compassion and some serious black humour.
I believe it taught me how to deal with baby loss. In an effort to not sound mawkish, I will just say that being grateful for life was and is where I try and find my way back to from the gaping hole of loss. There is a type of grief that you experience as you move from the loss of What You Hope Your Child Will Be to acceptance of the diversity from that. It isn’t comparable to the grief I feel now, but certainly touched the same places of heart and mind.
So, I will continue to campaign the concept that whatever happens, it will be alright. That your universe can be knocked off its hinges, but you will find your way back to you. Reach out, learn, support and all will come full circle. And to wear your favourite lipstick. Because right now, it’s what I most need to tell myself, sitting in RD’s room. In clothes that are only a hairs breadth different from pyjamas, holding his clothes to my damp cheeks. That I’ll one day find a way back.
Whilst writing publicly isn’t all heartfelt altruism, I do really hope that by sharing, by writing out loud how this is and how it will continue, will help others.
My life, changed but not defined by grief. Vote for me?