A few years ago; before all of this, I was very much a free spirit, very excitable and carefree.
Sadly I realise that in the last few months this has been drained out of me by the constant worrying, influx of appointments and various other things. It’s sad, it really is.
One of my old mantras used to be to try and live in the present. It sounds very cliché but as humans we seem to be conditioned to constantly want more from life, always saying to ourselves “I can’t wait for Friday”, “I’ll be happy when this shift is over”, “I’ll be happy when the weather gets better”, “I’ll be happy when we have a better car” etc.
Yes, I am like everyone else – I always want more. But my thing now is just wanting to feel normal again.
I am by nature both introvert and extrovert meaning that some days the thought of social interaction makes me shudder and I just want to hide in my bed (preferably with my other half too!) and play video games and never set foot outside.
On the same level, I equally want to be surrounded by people I love and to chat and be silly (lesser so these days).
I used to be very fond of working full time and “contributing”. My goal was to get a better/more interesting role, earn more money for nice things for my family.
At the moment I think what I want from life is that hunger for success that I used to have.
We all thrive on different things; we all have different hobbies and interests.
I feel that I have lost a lot of my identity and given up a lot of my hobbies and my new interest is making sure my daughter is happy. Sadly she is not happy.
At the moment she is incredibly reliant on the i-pad and even then she’s getting bored of that. She doesn’t like to be held, she doesn’t like to be in a seat, she is interested in toys but not for long (and requires me to 100% facilitate the fun), the portage workers deem her a challenge as do most who try to take care of her.
Seeing Amy smile makes all of this worth it, even if the smiles are only fleeting right now.
It makes you feel like a failure of a mother when you can’t make them happy all of the time, you constantly worry if seizures are back, if she is in pain and so many other things on top of “typical kid” stuff such as teething and growth spurts.
Amy’s cerebral palsy is spastic quadriplegic meaning that she is unable to sit, eat, walk, crawl etc.
We work so hard everyday on physio and various other therapies and I can see her frustration when she is unable to do what she wants.
We know that Amy is in need of a fundoplication re-do as her first one failed – this means she is back on anti-reflux meds but still in considerable discomfort a lot of the time.
Another waiting list.
The exhaustion of it has recently taken its toll on me to the point I can barely get out of bed in the morning and my eyebags look like they could store all of my belongings.
The reason I talk about this is to let others in my position know that they are not alone.
If you’re anything like me you want desperately for people to understand just how taxing it is. But at the same time you really want people to admire you and see how well you are coping.
You are either pitied or admired in this role, you’re a hero or a victim. I am not sure how I want to be viewed.
Every night when I go to bed I always without fail, dream that she has learned to sit and play with a toy, or has learned to eat or walk.
Never say never. I am cautiously optimistic but I think at this stage of the journey I am still processing it all and trying to come to terms with the future.
If those things never happen; that’s fine, providing my brain gives me the coping mechanisms I need to handle it and make sure I can make her happy.
I once signed a petition for carers to receive minimum wage instead of less than £2 per hour. I posted it onto twitter and was immediately sent abuse by a stranger claiming that I am draining the economy and that he would rather not be alive than be as disabled as my daughter.
Can you imagine my shock and disgust at this?
Old me would have blocked him and reported him – new angry me couldn’t resist fighting my corner and justifying this whole situation.
This man has obviously been fortunate enough to never have needed to make some of the very difficult career choices I have had to make, and I hope that if he ever suffers a severe brain injury that someone loves him enough to become his carer.
For me now there is no “it will be better when” or “I’ll be happy when”, it’s a case of taking each day at a time and learning to accept that there are good days and bad days.
I have learned a lot through this journey so far, whilst there are lots of negatives there really are a lot of positives too.
I have met some truly amazing and inspirational people who “get it”.
I have learned who all of my real friends are.
I have learned my capacity to love and learn.
I have also learned that everyone is fighting their own battle – you just don’t know what others have been through in life and it’s so important to always be kind.
I am slowly, thanks to our health system, learning patience and tolerance.
I still work one day a week and this has been a great source of respite for me and helps me enjoy a hot drink!
I love my colleagues and am very fortunate that my work has allowed me to work on such reduced hours in a role that suits me.
I know this hasn’t been my most uplifting post, but it’s important to me to document every emotion, be open and honest, and to show others that they are not alone.
I wish you all a huge amount of the good days.
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