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Frustration is.

Frustration is.

Frustration is being exhausted all day, but unable to sleep at night.

Frustration is chasing that medication for the 3rd, no, 4th time this month.

Frustration is spending 3 hours packing, only to forget something vital.

Frustration is, being desperate for a break, but when you get it, feeling guilty and unable to relax.

Frustration is, trying to retain credibility whilst holding back tears so you don’t look like you can’t cope.

Frustration is, finally being ready to go out but the beeping won’t stop.

Frustration is, finally getting the perfect spot, and then someone blocks your ramp in.

Frustration is, trying to divert your child’s gaze away from the park that has nothing for them.

Frustration is, having all of the thoughts, but not being able to put them into words.

Frustration is, only needing one kind voice, and then the secretary is rude and unhelpful.

Frustration is, knowing you know your child best, but spending every moment of the day second guessing yourself.

Frustration is, respecting the opinions of the professionals, but not feeling it is always reciprocated.

Frustration is waiting for planning permission, funding, someone else to say yes or no.

Frustration is fighting hard for the support you get, but living in fear it could be ripped away in a heartbeat.

Frustration is, finding the right meds, but then them having debilitating side effects.

Frustration is,a look of pity or judgment.

Frustration is needing some silence when the world feels like it is screaming at you.

Frustration is, millions of toilets for able bodied people, but barely anything for those who are not.

Frustration is working harder than most, yet often viewed as just a “stay at home parent.”

Frustration is adjusting to higher running costs for the house, but being unable to earn more than 30p an hour.

Frustration is spending your life on street view working out if somewhere is actually accessible because sometimes “there’s just one step” isn’t good enough.

Frustration is not being able to calm your child’s meltdown and feeling like the worst parent ever.

Frustration is your child being in pain and knowing it could be any one of 100 things and having to work through a list of guesses.

Frustration is uncertainty. Never being able to be complacent. A hospital admission could happen at any moment.

Frustration is seeing so many bad things happening to good, innocent people. Especially within our SEN community.

Frustration is knowing that money would transform our lives with equipment and adaptations but all of this being out of our control.

Frustration is not being understood by everyone not in our situation.

Frustration is having to say no to invites, but fearing one day the invites might stop.

Frustration is, knowing this list could probably go on and on, endlessly.

I accept that frustration is an inevitable part of life. I sometimes wonder how and why I was ever frustrated before being in the life I lead now.

I so often wish I had the problems I had 10 years ago compared to now.

Whilst inevitable and exhausting, frustration is a necessary evil. It spurs us on to concur another day. It lights the fire inside that keeps us fighting, advocating, and caring.

It makes me a better person. 

Recently I feel I have been at my most calm, and yet when someone blocked our van in at a park last week, I honestly felt like screaming.

I left a note on their windscreen. I worded it calmly but sternly. I carried that anger for days.

Why would they do this? Why did they park illegally? Can they not see the 10+ stickers all over the back of our van? 

These micro annoyances can accumulate and gain traction and cause us to be embittered and infuriated… but carers do not always have the emotional and physical resources to sustain this level of frustration.

I feel like over the years I have become much more resilient and much more careful in how I pick my battles.

Some battles can’t be won.

I still think there should be much heavier fines and monitoring of those abusing disabled bays and double yellow lines etc, however I am only one person.

I know my feelings are shared by so many others in the community and whilst we do what we can, sometimes the world is just ignorant and unfair.

I’d like to believe in karma and hope that one day these people will be taught a lesson whereby they regret their selfish actions.

But until then, coffee, naps where possible, and cuddles with my sweet girl who makes all of this worth it and then some

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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