Additional Needs

Finding my balance - What is Normal?

Posted by Ceri-Ann Brown on 8th October 2019 Additional Needs, Advice & Support, Disabilities

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Term time started and even though I was aching to my bone from the summers' chaos (and fun!), I couldn't wait to get into the woods with the dog and soak in some nature.

I like to take the treacherous route sometimes. To climb over some rocks, slip in some mud, find things that are lesser found.

It's a welcome distraction. Sometimes though I panic. I was walking a longside the river, admiring how the sunlight bounced off the water creating a glittery sheen when I could hear voices.

My anxiety started to set in. What if I get mugged? What if I have a violent confrontation? What if they steal my dog? Immediately my mind was flashing images of "stolen dog" posts on Facebook.. how would I tell Phil?

My mind has an annoying habit of always resorting to the worst case scenario.

As I reached the top of the hill I could see that it was two women, older than me, with a dog. I felt relieved. Not that they weren't capable of a good mugging... just they didn't fit my stereotype of a thug.

I prepared myself to let out a polite hello and then realised I knew one of the women. An ex colleague from over a decade ago.

In my excitement I almost forgot my words. I nearly opened with "I'm collecting conkers!!", Instead I mustered up a jovial "hello you!"

Recognition of me took a few seconds and then she said "oh wow you haven't changed!! How are you? What do you do now?".

I always feel awkward explaining what I do now. I don't often have to explain it as when Amy was born the news got out fast about the girl who had the terrifying birth story.

There were outpourings of messages even from people who didn't even say hi to me in the street before all of this.

"I'm a full time carer for my daughter" I said.

Their faces went from happy to pitiful. "It's okay though! I mean... it's not.. she's severely brain injured... but she's stable!".

I realised this also didn't sound positive. There was a stunned and awkward silence. I had a surprised audience now.

I had taken the conversation from happy casual chatter to now quite serious stuff.

I don't want it to go that way, but for some reason there is no light hearted way to explain our story. I explained that she has cerebral palsy and epilepsy.

"That must have you on constant alert!" one of them said. "Yes" I agreed, "I was always quite anxious before this but now I'm a nightmare!".

I was pretty much portraying myself now as this mentally unstable frantic person... which yes to a degree I am... but what people don't know is that actually.. this is our normal.

I don't wake up each day surprised that my child is severely affected.

I do wake up knowing that the day could involve literally anything.

I don't go to work, do a shift, come home from a vaguely uneventful day and then clock off. I spend the day checking my phone obsessively when she isn't with me, but I don't do it filled with panic. It's just normal.

"I bet it has made you a stronger person" the lady said. She hit the nail on the head with this remark. I have become more assertive in a positive way.

I now know that yes, you have to fight a lot for children with complex needs. Not only do you have to fight, you will go through things that are hard to bear.. like watching the 10th cannula attempt on your child as they scream not knowing why this is happening.

How do you bounce back from that? I don't know, but we do, somehow.

You become stronger mentally, physically, and even philosophically. This strength does come at a cost, we are exhausted, our emotional reserves are often depleted.

It makes it harder to maintain relationships, or to have any sort of routine or structure in life. But we persevere, through love, determination, and a longing to give our children the best life possible.

It's only when you have encounters like this that you realise that your personal normal is very far removed from other peoples' normal.

It can make it feel hard to relate to the world. I left the encounter feeling quite positive. I felt proud. I thought yes, my normal is a bit different... but I'm rocking it.

She gave me a reassuring squeeze of the shoulder, wished me well, and we parted ways. I felt great.

In that moment I reflected on those early days, and it made me see how far we have all come. I felt a surge of emotion. I wished Amy was with me in that moment so I could hug her and appreciate how glad I am that she is in our lives.

Recently I have been thinking a lot about cuddles with her. I remember at the start when she was a baby. She didn't have a cerebral palsy diagnosis yet.

In my naivety I sort of assumed that she would "get better" or maybe just be a bit delayed.

I didn't have a clue what to expect.

I remember holding her in my arms on the sofa and feeling heartbroken that she couldn't seem to settle. Why weren't we normal? I would find myself constantly comparing myself with other mums.

She would wriggle and writhe in my arms constantly. It was like she just couldn't get comfortable.

For a long time I thought it was because I wasn't set out to be a mum. I wasn't a natural at this. I would see other people hold their babies and their babies melt comfortably into the embrace and fall asleep.

It caused... and still causes.. quite a deep anguish in my heart.

It was only later when I learned that physically my child is unable to stop moving. Her particular type of CP manifests itself in the form of constant unpredictable and rapid movements.

It takes a very long time to get her to sleep. It takes a lot of brain power for her to try and calm her muscles so that her body can sleep.

Sometimes it's like her limbs are working against her. You can see how hard she tries to do something, but any slight heightening of emotion will set of a whole cycle of severe dystonic movements.

It looks exhausting. Her movement disorder is severe. We recently had a sling assessment and I was told it is not safe to hoist her on my own.

We tried 5 different slings and decided to try some other companies. We have tried several medications to no avail.

We have exhausted our options one medication at a time.

The movement disorder clinic are proposing brain surgery to help her (DBS). Imagine I had known back then what we were dealing with?

I wouldn't have spent so much time berating myself wishing I was a better mum. I was doing my best, and that was enough.

I look back and I wish I knew back then that I wasn't a bad mum. I wasn't bad at holding my child. I didn't know that 5 and a half years on I would still be holding and trying to calm the movements of my child.

I was just adapting to a new normal.

I sometimes have weeks where I am so busy. Collecting prescriptions, attending appointments with Amy at various hospitals, dealing with various illnesses and seizures.

Often our days are dictated by how Amy is feeling and behaving. I sometimes forget that all of these things aren't getting in the way of normal.

They aren't things to have over and done with so we can continue as normal. This is our normal. I wish I could stop viewing a lot of things as an inconvenience because actually this is how it will always be.

But I think it will take time to accept.

There is no normal. Not in any family. No one persons life is "normal".

We all have our own normal. Some normals look a lot different to someone elses. And everyday I am learning to accept that and push forward.