A thought that goes through every parents’ head when it is swimming lesson time.

A rush to get there straight from school and it is slashing down with rain. ‘Rush’ out of the car, try to get both kids changed on my own, quickly. William cries on edge of the pool because he wants to sit where someone else is – ocd stepping in – quick mummy hug and carry on. I think – this is going to be a long 30 minutes.

We get through it, he has a couple of panics, as it’s backstroke, and due to having no neck control and core strength it scares the shit out of him. I hate watching it. I don’t get that joy of watching my kids swim.

He cries for the fun jump in at the end – he cannot jump – therefore a fun jump into the pool is sometimes an ask too much. Phoebe loves it – comes over and tells me “mummy I did it with no hands”. I’m too overwhelmed with everything to properly congratulate her. It’s time to get changed.

Hell getting changed.

Watching him compared to his peers and his sister. Happily she gets ready, dries, changes her clothes, puts her own shoes on. Him however, cries when I dry his hair with the towel – hyper sensitive. Pulls on my hair, my clothes to try to balance when I try to dry him and put his clothes on in a bloody hot school changing room. Other mothers smile at me, I’m done, I’ve got no polite smiles left.

I’m tired. I’ll admit it. It’s Friday evening and the last thing I want to do is drive to swimming, watch swimming and then have the rig-moral of getting my boy changed.

Swimming is important for William – it’s a form of physio. I go all the way to St Albans on a Friday evening because Jak the teacher is great, and he trusts her. I can’t change that. He needs to trust someone when he’s in the water and scared.

Some peers that are younger than my boy have moved up classes and he’s still there – even though I know it’s the right class for him – I find it hard. It’s direct peer comparisons of his inability and his disability.

Heartbreaking.

Come home – he’s in bed finally and cries out because his legs are ‘tingling’, I don’t know what this is and it scares me and it’s scaring him. It’s happening often recently so a call to his consultant is required.

I’ll add it to my list.

The simple things in life are just not simple. I WISH I had your life. My heart aches for my boy. One minute I am so annoyed that he can’t get dressed after swimming; why didn’t he make as much effort in swimming as I think he should …. the next minute he’s in bed crying because of his legs and fucking Duchenne.

I DON’T KNOW WHAT IS GOING ON IN MY LITTLE BOYS BODY.

I’m scared

I hate Duchenne