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An Unpredictable Life

An Unpredictable Life

"Hasn't she got rosy red cheeks!? Is she teething or is she always like that?"

I get this question a lot. My answer? Like most questions... my answer depends on the kind of day I am having.

Why she goes red like this? Really I have no idea. In a way yes, she is teething. She is almost 4 and doesn't yet have all of her teeth.

Maybe a combination of her cerebral palsy diagnosis perhaps slowly the rate of growth of teeth, and maybe because she isn't orally fed and nothing is wearing down her gums.

Or maybe it's autonomic dysfunction - sometimes her temperature isn't as well regulated as it is for able bodied people. She often gets very cold extremities and very hot cheeks.

Perhaps it is food related? Her stomach can't seem to digest most things. Maybe it is some sort of allergy or intolerance? It isn't slapped cheek, it could be keratosis pilaris I am told.

Maybe she is flushed because she is tired? Sometimes just one cheek is red.

You get the point.

Every query anyone has about Amy can open a can of worms. There are so many things I don't know.

There are things she adores one moment, but will scream and cry at the next.

Life is not predictable for us and planning is hard.

One thing that is predictable at the moment is the decline in her mood at about 4pm. Often this is due to tiredness from a busy day of non-stop movement and refusal to nap.

Amy has dyskinetic cerebral palsy and her movements are constant, it looks exhausting. But switching off isn't easy for her.

So even if she is exhausted it is easier to just cry and get progressively angrier as the day goes on.

We have tried everything.

Until 4PM, we spend the day walking round shopping centres with her.

She wants to be on the go all the time.

Staying in at home is getting harder and harder.

She wants to see the world and have a lot going on around her. Many people have told me it is time for "tough love" and that she can't always entirely dictate what we do each day.

I am guilty sometimes of pandering to her every whim. But I feel it is my duty to make sure she is happy and we all just do our best however we can.

We tried to go to a friend’s birthday party at a soft play centre recently. It was at 4:30. I had to mentally prepare myself all day for the inevitable outbursts it was likely to cause.

I didn't want apprehension to get the better of me, and I didn't want her to miss the opportunity to have a potentially great time.

As it turns out, my instincts were right. Within moments of entering the centre she became very red and overwhelmed. We tried to take her on slides, we tried to go in the calming sensory room.

My heart ached as I watched the other children her age completely unfazed and delighted to be there. I try not to let it play on my mind too much... dwelling isn't conducive to a happy life.

We eventually admitted defeat after 20 minutes or so and retreated home to begin the bed time routine.

I apologised to Amy for taking her somewhere I thought she might be happy.

I explained why I did it and that hopefully one day we will be able to leave the house in the evenings.

I hoped she understood what I said and knows that all I ever want is the best for her.

I reflected on the bonfire displays missed, the pantomime invites declined, the meals out we've never partaken in.

The times we have had to leave somewhere after trying our hardest to appease her so we could selfishly see people for longer.

I let out a sigh, kissed her goodnight and sulked on the sofa, annoyed with myself for letting my negative emotions get the better of me.

I am her mum... her dad and I are the ones who are meant to know her best.

The course of action to make her life great is fully on us. It's a terrifying responsibility at times and you live in constant fear that you are doing something wrong.

Lately her irritability has been next level. To the point of respite asking me to get her checked out in hospital, and nursery calling saying she is in gastric distress and needing paracetamol.

It has taken a huge toll on my mental health and I actually went to the GP last week to trial some different anxiety medication. I am no use to Amy if I fall apart every time she falls apart.

People always say that "your crying child isn't giving YOU a hard time, THEY are having a hard time". But the reality is for most parents that their child is not happy then no one else in the house is.

Tomorrow we are back at the city hospital to insert a new GJ button (feeding tube that bypasses the stomach and goes through to the bowel) in the hope that maybe this is the cause of her increased disconcertion.

But like I said... guess work. All we can do is try different things and hope that something, somehow works.

Firefly Blog

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

Ceri-Ann

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!) I like to blog, read, play video games and listen to rock music. I have a huge love of coffee, animals, and nice days out with the people who matter.

View Ceri-Ann’s Profile

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