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Carving out my new identity as a parent carer to my daughter with Down Syndrome

I've thought a lot lately about my identity as a mum and a carer.


Just after we were given our prenatal prognosis of the high likelihood that Hermione would be born with Down Syndrome, I remember saying to Danny, "what if I have to give up work?"


I remember it being a thought I kept revisiting throughout the pregnancy.


Looking back, I realise I was trying to grasp and seek out my new identity; not only as a mother, but as a potential carer.


I won't lie: it was daunting.


I'd been a single mum to Hermione's sister for six years before I met Danny. I'd worked full-time in education; juggling, like a lot of people do, the responsibilities and demands of parenting, and the commitments and pressures of work.


I just about coped and I thought I knew who I was and perhaps I was nearing the finished product of me.


Fast forward a few years, and suddenly this carved out identity seemed on shaky ground. I was free-falling in a universe unfamiliar to me.


Work was part of me; and me part of it.


What if it was no longer a part of me?


When Hermione came along, I returned to work part-time for a period, and reverted back to the version of myself I knew.


Eventually giving up work altogether to become Hermione's full-time carer, was a strange, but for me, necessary thing.


The anxiety of balancing it all was causing me to buckle.


But I struggle with not seeing colleagues everyday: the same ones I'd seen for 18 years.


We struggle as a family on a lower income and the reliance on benefits.


I worried that I wouldn't be able to unpick who I am at all.


It's taken nearly a year to really get to know this new version of me and I'm still working on it.


I take life slower because Hermione does.


I have different expectations of myself and daily life.


Being a parent carer does change you; whether you're a carer who works full-time, part-time or has chosen to leave work. You choose the thing that is right for you: to keep you sane.


I realise that it wasn't the end of my identity when I gave up work, but that I'm evolving towards a direction I never expected to.


We always say Hermione has made us better people, and that is the truest thing.


She is an unexpected joy who has unlocked parts of my identity I never knew I had.


At 20 weeks pregnant, it seemed unthinkable to me that I would not have my identity of work.


I wish I could tell my former self that it was going to be okay. Different, but okay.


And that identity can be sought out in the most joyfully unexpected places.




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