Additional Needs
The Identity of a "Medical" Family
How do we identity ourselves? I think constantly about identity and how we are perceived. I pay probably too much attention to wondering about the perception of complete strangers. What do they think about me when they see me?
I know that ultimately it doesn't matter what a stranger thinks, but I think what eats at me is the very incorrect perception that families like ours are given everything on a plate and don't have financial constraints and are in some way freeloading.
It is far from the truth and I always feel on the defensive even when I know the majority don't feel this way. I have this constant need to feel understood and instead of stares or pity I just want for all of us to be equals, on a level playing field for all, and to be treated with kindness and not judgement.
Our identities are said to include our values, beliefs, and our personalities.
It also encompasses the roles we play within our families and in society. It includes our hobbies and our interests and many other things. I often feel that for families like ours - a lot of this is sort of lost.
Our priorities are a little different. Our perceptions of life are likely somewhat altered by our past experiences and our current challenges. It can entirely change you as a person, for better and for good.
We may have just spent a week in hospital - all plans cancelled, our worlds upturned. We may be exhausted from the 10th consecutive night of broken sleep. We may actually be perfectly fine and just wanting to live as "normal" a life as possible.
We are like shape shifters, adapting to whatever is thrown at us next; often with no warning. I always think that when I am out with Amy they will see a “disabled child” and a “parent carer”.
I have read before that carers very often feel they lose their sense of identity
The role of carer is severely underpaid. There is no annual leave, there are no sick days, there is no special pension scheme. It’s easy to feel undervalued and underappreciated. A depleted self-worth can affect how you feel about yourself and your role in society.
My life is very much Amy centric. I think for most parents their child is their main focus in life, or at least one of them. When your child has high medical needs and relies on you for 24 hour care it is hard not to let that role define you.
I remind myself regularly, I am not just “mum” (as I am so often referred to by many grown adults!), I am Ceri-Ann.
I am a parent carer, I am mum, but I am Ceri-Ann first.
Amy is Amy. Yes, Amy has a disability and various diagnoses. But before she is a “disabled child”, she is a child. She is her own person.
Identity is so often defined by what you do for a living. I disagree with this wholeheartedly. So many people work a job to pay the bills and don’t necessarily do something that they are passionate about.
It’s a difficult one for me because I am privileged to be Amy’s mum and carer; and yet I do yearn for that “normal” life (if there is such a thing.) I miss being able to clock out at 5pm and be rid of my work responsibilities for the day until tomorrow.
I am on the clock 24/7. She could be at respite, school, the hospice, anywhere, but I need to be ready on a moment’s notice. I am like the 4th emergency service… but to just one person.
I miss the camaraderie of office life. The brew runs. The pointless “this could have been an email” meetings. The social aspect. Even back then, I didn’t identify myself strongly with my work.
Whilst I was passionate about doing my job well, it didn’t define me.
And yet as a “medical parent” or whatever I am; this seems to be my whole life. I think non stop about the next Amy related thing I need to deal with.
I think constantly about advocating and what I can do to raise awareness of accessibility and make a small, positive difference in what can sometimes be an incredibly frustrating world.
I must remember that above all of the admissions, admin, phone calls, appointments, meds, therapies, interventions etc I am also loving girlfriend, nature lover, animal lover, rock music lover, gamer, coffee enthusiast, pizza lover, tree and plants lover, reader, writer, podcast addict.
I am so many things. I am caring, anxious, a bit exhausted, a bit silly, an overthinker, a rambler, a bit of a complainer (sorry!).
Don’t lose yourself
Behind the role of nurse, doctor, physio, dietician, speech therapist, etc you are your own valid, amazing, hard working person.
Amy is determined, hard working, feisty, cheeky, clever, funny, caring, sweet. She is so many things. She is a nursery rhyme lover, lover of the outdoors, lover of songs, lover of toys, lover of interaction.
She is all of the superlatives - I am biased of course. She is complex and not just in her health. She is not to be ignored, not to be written off, and just as important as everyone else.
So yes. You may look at us. You may pity us, empathise with us, stare at us, or maybe just outright not understand us. But we matter, we are important, we contribute, we are valued, we are a multitude of things.
We are not what we appear to be on the surface. We have many layers. We are all complex. We are all human. We are all fighting for our place in this world. We all want to belong and be equal and accepted.
