It is half term.
Less time, more care duties.
How will she ever manage to do it all?
The drawing and giving of medications, setting up the tube feeds, keeping on top of paperwork and the phone calls. The washing, the prescriptions, the appointments... and the worst of all - the washing. So much washing.
The daily bedding changes, the meltdowns, the running of the house, all of it. How?
She takes a deep intake of breath. She exhales. You've got this. You can do it. She assures herself, with a lump in her throat.
Respite days used for chores, the days as mum and carer occupying a child that is unable to occupy herself.
She yearns desperately to feel that feeling... that feeling of freedom and lack of responsibility.
Then she feels a wave of grief and guilt for feeling those feelings.
She counts her blessings every day and knows how incredible it is that she has this role.
She worries about the future - the pension (or lack of decent one), the lack of real holidays, the no sick days.
Her mind then progresses further - what about when she is no longer there? Then what happens?
Every night she climbs into her bed.
Her lower back pulsing and throbbing with pain, her hands chapped and sore from the constant cleaning and washing.
She expects to immediately fall into a deep slumber but instead she lays awake.
Thinking. Just thinking.
Where do we have to be tomorrow?
Have we prepared notes?
Have we packed appropriately?
Will there be wheelchair access?
Where is the nearest hospital?
Is the iPad charged?
What if she has a meltdown, how will I cope?
What if she has a bad seizure?
Are the rescue meds in date?
Should we go and check?
The insomnia kicks in.
Her mind then moves to "do people think I'm a sponger?" "do they know how hard they work?".
In her head she replays the conversations.
They unfold in the form of a montage.
"are you still not working?"
"I've never worked this hard in my life" she thinks to herself.
But she's too afraid to say it.
She doesn't want people to think of her child as a burden - she isn't a burden.
But at the same time, our life has turned entirely upside-down.
"Do people think I'm lazy?"
"Do they only talk to me because they pity me?"
"Do they think I did something to make her this way?"
"Do they look down on me?"
"Should I be working? Am I doing this right?"
The next day comes and her head is sore.
She wishes she hadn't spent the night tossing and turning, having nightmares, feeling pains in her back.
It is a new day, what will the day hold?
"Can I do this? Have I got the physical and mental strength required of me as a mum and carer to go about this day?"
Each trip is met with additional obstacles that otherwise would not exist.
She sighs as she gets the seatbelt wrapped around the wheelchair and is unable to get her child out of her car.
She winches it back in and uses all of her strength to untangle the seatbelt and release her child from the car.
As she does this she watches a man with a child of the same age watch his child of the same age as hers hop out of the car and run to hold his hand.
She feels that pang of grief in her heart. Why does it have to be harder for us?
The guilt kicks in again. She shouldn't feel this way... she should accept things as they are, not compare, and be grateful.
Where are the wheelchair trolleys?
She searches the carpark looking for a trolley that will attach to the chair.
Her child becomes "seizurey" and dystonic... she doesn't like the loud noises another child is making in the shop.
Breathe. Breathe. You've got this.
She plans her route with military precision... fruit. Nappies.
Milk. Coffee, definitely coffee.
She darts around the shop performing elaborate renditions of her child’s favourite nursery rhymes.
This used to make her self conscious. She no longer cares.
She gets in the queue. Self-checkout... we don't have to talk to people here.
Another child takes an interest in the child. The child stares.
The mum begins to feel her heart rate rise and her cheeks get hot.
Why is this child staring so unashamedly?
Just say hi, look away... do anything other than what you are doing.
She knows this is only natural but she has seen it too many times before and she aches inside at the thought of other children seeing hers as "different."
"Look Amy... that little girl is looking at you... are you going to wave and say hello?".
She finds the least painful way to confront this issue and advocate is to introduce the able-bodied community to the child.
Awkward exchanges are made.
She makes eye contact with the other parent and smiles.
Did I do the right thing? Did I make it worse?
Why did I leave the house?
She starts to well up.
Don't cry. Don't cry. Just get to the car... high five your child for being so good in the shop.
It's a lonely world, she thinks as she walks out of the shop.
On her way to her next destination she drives past her old place of work.
She remembers with great nostalgia her love of this job.
She remembers the pride she took in her work, her love of adult conversation and her ex colleagues.
She remembers being able to clock out from her duties. She grieves.
The day she left that job, she was most likely replaced. In her current role, carer... she is sort of irreplaceable.
No one replaces mum.
She reminds herself of how far she has come and reassures herself that she is a better and more resilient person now than she ever was before.
Every day she steps into the shoes of many roles.
She is a nurse, a doctor, a physio, an OT, a speech and language therapist, a dietitian, a gastro consultant, a neurologist... she is everything, to this one person.
This reminder brings comfort but also fear... this is so much responsibility.
How can so much responsibility only pay about 30p an hour?
How can it make your self-esteem drop so far?
How can it make you look like someone without a "real" job when carers of strangers are paid about 40 times per hour what she is paid?
But then how is she a carer?
She hates the term carer.
It dissociates from the fact she is a mum.
In fact, she has grown to hate both terms. "Mum" is something the health professionals refer to you as... and it is the word that you know your child will probably never say.
Carer implies a person with a financial interest in looking after a person.
She feels lost.
She feels entirely dissociated from both the working world and the non-working world.
She drifts between relaxed normal life and working life.
The two merge together, co-exist, and depend on each other.
The barriers are confusing... the people in her life are often paid to be in her life... and they feel like friends... but in a way they are not.
Boundaries are blurred, her role is blurred, and nothing is certain.
She contemplates daily about "carer" and its meanings.
Her health has worsened - she picks up every illness, every infection.
She has gained a tremendous amount of weight; her confidence is gone.
She wonders if things will ever be different.
Will the hardest working people ever in the world ever get the recognition for what they do?
Do they have their own identity?
Are they receiving the right level of help to maintain their mental and physical health so that they are able to do their job to the maximum of their capability?
It is a job that pays so little and can take so much... it is a job that you don't choose... you don't have an interview, you don't get any perks.
But it is a job you do with pride, honour, and most importantly, a deeper love than anyone could ever possibly comprehend.
I wrote this piece as a stream of consciousness for carers week.
If you know someone who is a carer... of a parent, a child anyone... ask them... and ask them sincerely... how can I help?
Sometimes, even going out for milk is an improbable mission.
Sometimes, we need company.
We feel a huge range of emotions all day, every day.
It is draining.
We need you, we see you, we appreciate you.
Before this... we were just like you... anyone at any time can become a carer, and they deserve a huge amount of attention and respect... as do the awesome people we get the privilege of caring for.
Until in this world I hadn't realised how underfunded so many things are and how hard carers fight day to day just to ensure that theirs, and the person that they care for, needs are met.