Not today thank you

I am a very vocal advocate for children with special needs and different conditions. Obviously the main being Rett syndrome.

Anyway for most days you will find me happily chatting about what struggles having a child with disabilities can bring and also how to help said child reach their full potential.

It is a common conversation topic and I seriously don’t mind.

Well I didn’t till yesterday, then I had enough.

It may have been an overload from a training course, it may have been the left over tiredness from illness.

Regardless the reason I had just had enough.

I didn’t want to understand.

I didn’t want to have to inform.

I didn’t want to advocate.

I just wanted to be.

I hate that some children’s lives are the topic of such conversations. Working out the right medications and therapies to get a fulfilling healthy life.

I want to be talking about girlfriends and boyfriends and not seizures or physio.

I want my child to walk to school not have to go in his wheelchair on a bus.

I want to hear about his day from him and not have to read his diary.

I know life is life and nothing will change this.

I also know that I love my job and raising a child with special needs.

But sometimes


I just want to say…


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