Rebecca Highton by Rebecca Highton

Rebecca Highton

Rebecca Highton

I am a mum of twins, one has special needs. I enjoy blogging about life and the reality of parenting.

Cerebral palsy. A term that means so much and yet so little. An umbrella term for a condition that affects 1 in 400 babies born in the UK.

A term that affects so many yet, so little is known about. It is a diagnosis that covers several neurological conditions but for me, it is a diagnosis that means nothing.

‘Cerebrum paralysis’ is what the term comes from. Cerebrum is a principal part of the brain that controls a variety of functions including sensory (seeing, hearing and feeling), co-ordination, and voluntary movement.

Paralysis is the loss of ability to move.

So, in essence, my child’s brain is paralysed.

The cause for Alfie was a variety of things: twin to twin transfusion syndrome, prematurity, lack of oxygen and negligent care in the weeks that followed his birth.

This huge variety has meant Alfie’s cerebral palsy is classed a quadriplegic. ‘

Quad’ means four, so often people assume that four limbs are affected, but in reality, his whole body has been affected.

His brain has been so damaged that he cannot control any part of his body, including his organs.

The label simply doesn’t come close to the disability. No label could come close to explaining Alfie.

When Alfie was diagnosed with cerebral palsy, it wasn’t actually a shock. Having a twin meant we quickly saw the delays Alfie had and the fact that he wasn’t developing very much, if at all, was very apparent.

Quickly Rory was rolling over and, on the move, whereas Alfie still couldn’t even support his own head.

At 8 months, when Alfie was diagnosed with cerebral palsy, the doctor said he “couldn’t predict Alfie’s future, but…” And that ‘but’ has become both encouraging and stifling.

The first few appointments following Alfie’s diagnosis consisted of me asking “what will Alfie’s future be?”

This was generally followed with all of the things he won’t be able to do.

The answer always started with “we can’t predict his future but”: he won’t be able to roll; he won’t be able to crawl; he won’t be able to walk; he won’t be able to feed himself or get himself dressed; he won’t be able to; he won’t be able to; he won’t be able to…

All that I heard was Alfie will not progress beyond the baby in front of me. He will grow in size but not in ability, he will age but not develop.

He will be a new-born in every way physically, yet he was no longer a new-born and never would be again.

Yet, for all the limitations on what Alfie can do and what the future may hold, so much uncertainty also works to our advantage.

The professionals have no clue what Alfie will achieve, and so they give us the worst possible outcomes. Yet Alfie has already begun to surpass them.

He is rolling and developing each day. He is trying to crawl and learning to feed himself. He is truly amazing and a joy to watch.

There is no way to describe the overwhelming pride and emotion that comes from watching Alfie develop and progress.

Each day he learns something new, and each day he continues to try his hardest at everything he does.

His determination and enthusiasm in everything he does mean that there are no limits on what Alfie can achieve.

With our support and love, he has already surpassed the expectations of the professionals, so we no longer ask about what he will be able to do - we let Alfie show us.

Alfie does not let anything hold him back, definitely not his disability, so why should we?

Watching him grow, learn and develop each day just proves that Alfie’s future cannot be predicted.

He may not be able to do everything that others can do, he may take longer to do somethings, but he can do anything he puts his mind to, and we will support him in everything that he wants to do.

We will be his biggest supporters, his advocates.

So, when you see our child in his wheelchair or his walking frame, or any child with cerebral palsy, do not feel sorry for them.

Instead admire them, they have a sense of determination and strength that is inspiring to see.

Alfie tries his hardest at everything he does, he is kind and mischievous, funny and cheeky, he is endearing and loves truly.

Alfie leaves a mark on every person he meets and his future is limitless.


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