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Don’t Lose Yourself - You Matter

Don’t Lose Yourself - You Matter

I remember about 15 years ago, watching a TV show here in the UK about regaining confidence and your identity as a woman/person.

The show usually consisted of different middle aged women, being forced to confront the mirror in their underwear and celebrate who they are.

Most of the time the women recoiled in horror, looked through squinted scrunched up eyes, or just flat out burst into tears.

They would disguise their shape in baggy clothing, they’d stick to the same hair style they’ve had in forever, they’d refuse to let their partner see them in any less than a baggy t shirt.

I remember back then watching this show and thinking wow, how did these poor women let their self esteem become so low.

Why is their opinion of themselves so negative and extreme?

I also remember thinking “that’ll never be me”.

So confident in who I was as a person, I felt like nothing could ever happen in life that could bring me down.

Even though I have always been a self conscious person, I never would expect I could be like the women on this show.

Fast forward 15 years. Hello baggy t-shirt, my best friend.

Hello same hair style I’ve had for 15 years. Hello not looking at my whole body in a mirror but falling apart when I do.

For me, at least. I can see how this has happened.

Becoming a parent, working full time, all of the “typical” stuff changes you.

You can become lost in that routine.

You’re sleep deprived, you’re busy, your body has been through so much and mother nature is doing her work.

I feel that as parent carers this is exacerbated tenfold.

I remember a big part of my identity used to be my work.

I was proud of the work I did. I worked in a busy social environment where I felt accepted, liked and valued.

This fed into my confidence and my feelings of self worth.

Quite often people ask you what you do for a living.

To me this can translate as “what are you offering society?”, “what makes you important”.

Being unable to work, being detached from that social environment, being sleep deprived, being busy.

It takes its toll on you. It’s so easy to feel undervalued, unnoticed.

Prior to having Amy I had no idea people lived lives the way we currently do.

I wouldn’t have recognised my importance or even acknowledged myself really. How sad is that?

“That’ll never be me”. We always think it won’t be us.

But things happen. Life happens. This is life now.

My point of this post is to 1) tell you that you matter. I see you. 2) past me was naive and wrong. I miss that me. But I am a better person for my experience. 3) parent carers are hugely unrecognised and marginalised. 4) I am so sorry to those women. You are amazing and you matter. Make over or not, you are wonderful.

How often in life do you appear in a normal setting and think “I am the other”, “we are different and people are recognizing this and looking at us”.

So many times behind a forced smile I am screaming out in my head “we are just like you!!”. 

Yesterday in a queue at a shop a little girl was looking with interest at Amy.

I was waiting for the “mummy why is that big girl in a pram?” and the usual awkward conversation that tends to unfold at this point.

The mum either pulls the child away shushing and embarrassed; or the preferred option of  teaching and making the moment a positive experience.

The lady said “look, that little girl has a toy like you have”.

It was true. Both of our girls had little electronic toys.

Sure there was about a 4 year age gap between them but the mum had chosen to recognise that indeed in spite of their differences we all still have things in common.

I smiled (and I hoped they could tell through my mask!) and did an awkward polite chuckle. 

InternallyI was thinking “please. Stop staring.” and wanted to leave the queue, get in the car and go home.

Sometimes when I’m anxious I just don’t want the interactions.

I read too much into things. Had Amy been a “typical” child I bet the child still would have stared at her.

But I’ve had so many awkward experiences that I am almost conditioned to want to bolt and retreat to our own world where we are the norm.

Being a carer can literally and metaphorically isolate you.

Being isolated and feeling forgotten can make you feel unimportant and undervalued.

These feelings can lead to a whole host of negative feelings.

I feel like my own worst bully sometimes. I see my peers in a similar situation, seemingly coping better than me and I berate myself.

Why can’t you be more like them? Why aren’t you coping better? Why do you binge eat and gain weight?

Why can’t you do something about your weight? Why can’t you do more on less sleep? Why is the house a mess? Why are you always chasing meds, why can’t you be more organised? Why can’t you try and get a job and juggle the two?

The interpretation of the word "carer" I often find doesn't include us.

Most people seem to think a carer is a) a person paid to come and look after someone. or b) a person who is caring for an elderly relative i.e a parent or spouse.

I find rarely do people talk about the parent carer.

When I am having one of my down days I sometimes trawl google images for a suitable quote.

I have found almost all of the carer ones relate to it being a job where the person is employed to provide care but isn't an actual "full time carer", or it relates to people caring for an older relative.

The ones relating to parent carers seems to often be in the autism category.

I suppose though, the parents of children with high medical needs/complex conditions separate to autism are a smaller minority.

I have found that in the carer forums, whilst we are a minority much of the issues are feelings are the same but some of the challenges differ.

If anything it makes me dread the eventual (I hope) transition into adult care.

Every now and then I remember. Most people have a baby and have a few years of little sleep.

We are 6 years into this now and even with sleep medication and an airtight bedtime routine - we are still getting that same lack of sleep.

Sleep is a key factor in coping and well being. It is no wonder I’m a bleary eyed, eye bagged, coffee addict.

Throw into that the 24 hour tube feeds, the appointments, the therapies, the meltdowns, the decision making, the emergencies, the lifting, all of it.

Really we should be being celebrated and so should our children.

We go above and beyond what is “expected” of being a parent, in spite of feeling worse than some of my worst hangovers of my 20s.

To be honest everyday is a miracle. Every night of no sleep is a blessing that she is still here.

The day a full night's sleep would be possible would be a day she isn’t with us, and it doesn’t bear thinking about.

There is hardly any aspect of our life that is the normal level of difficulty.

Everything requires planning, extra equipment, extra strength, extra knowledge.

It is no wonder our emotional and physical resources are depleted. I look back at my old full time job.

How could I think I was ever tired or stressed back then!? That isn’t to say I’m not grateful for my life.

Yes I wish I had more sleep, yes I wish simple tasks could be easier and not a battle, yes I wish simple things like a suitable bike weren’t £3000. But I am so lucky to be such a huge part of my daughters’ life.

I get to be there more than I ever could if I were working full time.

I get to be part of an almost secret world. I get to raise awareness and celebrate every milestone.

I applaud people’s differences and can display a heightened empathy I didn’t know I was capable of.

I sit here, in our small cramped adapted home… in my baggy T-shirt, craving a coffee, and knowing that come 4pm she will be home for school.

I can’t wait to see her smile and hear her laugh. I also can’t wait until bedtime. 

I know on those hard days you might beat yourself up. No amount of mindfulness, going for a walk, drinking green tea.. whatever remedy the internet would have you believe can fix this... you just have to take each day as it comes.

Sometimes even 5 minutes at a time.

So remember. You matter. Mums. dads. Everyone.

Whatever your situation in life. You’re doing your absolute best within your own set of unique circumstances, even on the days where you feel like you’re doing terribly.

You are not your job, or just “mum”, you are your own person with your own wants, needs and hobbies.

What makes you unique is so much more than the harsh standards that you likely judge yourself by.

Firefly Blog

Real life stories, issues and experiences of day to day life by special needs parents and
healthcare professionals.

Ceri-Ann Brown

Meet Our Blogger

My name is Ceri-Ann Brown and I live in Stockport, Manchester. I live with the love of my life Phil, my amazing daughter (Amy-Rose) and my giant guinea pig Vito. I care for Amy full time and work one day a week in an office/call centre. In my spare time (ha!)

View Ceri-Ann’s Profile

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