49 Days, 7 weeks into this journey!

Trying to protect our son from the unknown.

The bad days/moments are becoming more frequent. This past week was very hard, very emotional.

‘Mummy school’ is feeling low and deflated. ‘Mummy school’ still has her work to do. ‘Mummy school’ is starting to feel hemmed in.

It’s frustrating to see all the posts saying ‘just keep your kids happy, they’ll learn when they are back at school’ – well that’s not the case for William. He needs constant education – and I have had to adapt it all for him. He’s far behind his peers in reading, writing, literacy and maths that the work set from school for his class (aside from art and topic) is nil and void. He needs to learn. He needs me on top form.

Do you know how hard it is to have a kid who one day can read some words, can remember some numbers – the next day, nothing? To have the patience, the understanding, day in day out to help this child – when to be honest, I don’t understand his form of learning. I am trying, but it really is hard. Really hard. To see the struggles on his face, to wish I knew what was going on in his beautiful brain.

I’m struggling more and more to motivate them both for the day. I don’t want to be that mum that shouts first thing in the morning, that dreads the learning day ahead.
We have a good little routine, but the tantrums are more frequent, for longer and for no real reason – except the fact that they are stuck at home and CANNOT LEAVE!

They have been prisoners in our house for 49 days now.

But, they still smile, they still laugh.

What I wouldn’t give to take both my kids for a lunchtime walk to break the day for us all. What I wouldn’t give to pop to the shops to pick up our groceries, to have some time to myself. I would love to wander past the school with the kids to wave to their teachers…. to show them that they are there.

My children, my family are my world. I would do anything for them, and I am. But, as I’ve said before, I am only human too. I am a mum, I am trying my hardest. But, I break too.

I would love to not live in this world where my son has Duchenne. This bloody virus just highlights quite how different our journey of life is compared to our peers.

How segregated we are as a family.

How THIS is a glimpse of our future.