A Baby Made me a Mam, But a Diagnosis Made me a Parent Carer

But you’re JUST a mam… doing no different to any other mam… Although I suppose that’s true to a certain extent, as in a, will always care, love, and support my children, but in actual fact it is naive to think parent carer should just “get on with it” because we are parents. Unlike parents of neuro-typical children (I know because I am one), it takes a lot more to be a parent carer and we shouldn’t diminish or minimise anyones experience of parenting a child with additional needs. Parent carers are thrust into a situation of care that they’ve never expected, instead it’s a lot like bracing for impact. You have to grit your teeth throughout, sometimes a long process, of testing, questions, and diagnoses, just to prepare for the point when you hit the ground. When you look up? There is no one there holding out a hand to help you get up off the ground, you tend to find your friends have disappeared, your family is a little distant, and the world looks ash ridden. There is just a dusting of bitter, uncertainty, fear, and anxiety on everything around you. It is scary. Over time while you’re learning your new child, their world and everything that comes with them, you begin to learn new things about yourself and the world you’ve never been invited into. You learn that nothing is easy, everything tends to come with a fight, or takes an energy you didn’t know you had before. As your world grows, develops and changes, your child tends to stay, frozen in time. Or at least, mine has. Over time you see kids grow, mature and develop in to young people. You see a change in them, coming out of your shadow and into their own usually, I know my eldest two have… Delilah though, not so much. We still dress, change, bathe, night time routines, help feed, and support her every waking need, and that’s on top of everything else… I am aware that Delilah is different, although it’s not my focus. Delilah, her brother and sister are all their own entities, wonderful, lush and mine. We are soo proud of them all… but Delilah is different. Delilah will always be different, and although nowadays that’s a last thought compared to those early days, it is still a thought that has been processed, accepted and dealt with in my brain millions of times… but will always come back time and time again. Does it make me a bad person? No. It makes me a mam having a human reaction to having a child with challenging complex medical needs. Does it make me like every other mam? No.

It makes me a parent AND carer, better known as a parent carer… because I will worry about her and her being her own entity, like any mam would when worried about their child, but her needs beyond that make me a carer. This week (carers week) I posted a post to make others feel like they were seen in the carer community, and someone replied “so being a parent then”… I won’t lie this infuriated me. This week of all weeks to minimise the role… I responded dignified and carried on my day.

Do you know how long it took me to realise I was a parent? 0.3 seconds of a positive pregnancy test 17 and a half years ago.

Do you know how long it took me to recognise everything I have said above? To recognise I was a carer? Almost 9 years. Delilah, is 10. Coming to terms with being a carer is hard enough, its always the last thing to realise and do you know why? Because we are too busy CARING for our complex kids to realise… and we are too busy telling ourselves “we do no different to anyone else!”

So this week allow yourself a minute, a break, a pat on the back for all the care you do, because you’re NOT JUST a parent, your someones lifeline, you're a child's everything and you are a parent carer.

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