I watch him sleep. I watch his little body jerk. I watch his arms and legs flail around before finally resting. I know he won’t sleep for long. I do my usual bits and pieces around the house (it’s true what they say, a mothers work is never really done)

I finally put myself to bed one hour after he sleeps. I check the monitor on my phone one last time before I close my eyes. He is either perfectly still, or his body is beginning to wake him up.

When he’s laying perfectly still, I get up to ensure he is breathing, (It’s a reality for kids with hunter syndrome , that they can just stop breathing and lately I have become so aware of that little fact)

When his body begins to move, I get up and get a coffee as I know it won’t be long until he’s wide awake,shouting and trying to get out of bed.

By 11pm, I am back down the stairs with him as he is awake and agitated. It falls to me to ensure he doesn’t wake his brothers or his father who all have to be up for their daily grind the next day.

For four weeks that was our get up time, 11pm. He would stay awake the whole night only dosing from 7am. I’d walk my youngest boy to school and try to nap from 9.30am until 11am. But when your son is in crisis, the morning time is when the phone rings constantly and the meetings start. Sleep was something just out of my reach until the weekends when my husband was home.

Sleep is currently still a struggle but our get up time has improved. Ethan and I see the sun rise every morning and often we are awake for witching hour (3am) , which by the way,we have yet to witness a single supernatural event.

I have not been able to write a single word since Ethan has become unwell. I have been too tired, too emotional, too preoccupied, too sad, too troubled, too worried and just ‘too’ everything. In the midst of all this I have had some lovely moments with just Ethan and I. We’ve laughed. We’ve cuddled and we’ve watched some of Ethans favourite movies of all time over and over again.

I haven’t been online much or taken part in any social media for my blog and I have let a few editors down, which I am not proud of. They have been very understanding but in the world of blogging and trying to be a writer, deadlines are vital and I have watched each one come and go.

I can see my readers declining.

I can see my stats dwindling and my emails are becoming more about my rich unknown uncle in Serbia,who has a fortune to leave me, if only I’d share my bank details.

I don’t care about my stats but I do care about my readers, which is why I have written this by way of explanation.

It’s not that I have stopped writing,it’s just that I can’t.

I can’t find the time, my head is filled with everything I have to do today, tomorrow next week…in order to keep Ethan safe, happy and to bring him back a little bit to us because right now he isn’t the same child.

We are off to Lauralynn on Friday for the weekend and to be totally honest, it can’t come quick enough. We are worried about the travel involved but are hopeful that we can get Ethan there even if it takes us that bit longer.

I am hopeful with Ethans new CBD oil that we will see an improvement and that life will becomes less hectic, less about sleep and less about phone calls and meetings.

And that I will be able to sit down, with a coffee and enjoy tapping on my keyboard once more.

Until then, feel free to follow me on the blog page over on facebook as that’s where I tend to write small updates when I can.

As always, thank you for reading, commenting and sharing, you folks are some of the best readers and supporters in the world!