They then look at her and then back at me and you can see the cogs turning.

My daughter’s disability is in her muscles and her internal organs, you wouldn’t necessarily realise she had a disability with a quick glance.

Then the questions and statements come;

– All babies need a lot of care she looks fine, so why are you a carer?

– So is she going to die?

– How can she be disabled she is a baby, carers are for the elderly?

Generally I am fine with answering these questions with a sweeping statement about how her nerves and muscles randomly stop working, that her kidneys and heart are failing and no one can give a reason or an answer, that actually if you look more closely she does have physical deformities.

We don’t know if it is life limiting but as long as she is smiling I am smiling.

I just wish people knew how hard it is to be a carer to your own child. My diary is full of appointments with different therapists, different consultants, and different hospitals.

I am used to worrying with my other children; when should I change to normal full fat milk in the bottle, my son only said 5 words to his friends saying 10, and what shoes won’t scuff when we go to the park etc.

Now I worry about when and if my daughter will; walk, stand, talk or ever eat independently.

I now know so many words that even google struggles to find helpful websites for, usually it just churns out research paper links.

I now know that being a parent is such hard work, and yet being a carer and a parent is a different kettle of fish.

I have learnt that as a parent, you just seem to find this strength from within to be a Mama bear, who will protect her cub against the world.

Nothing could have prepared me for being carer, I would have thought being a carer to a child was no more than being a parent.

However now I am on the carer path I know that there is a difference, I am still a parent, however I am also a carer, both I put my all into and both come with their own challenges and stresses.