It’s Been Awhile
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!
I can’t begin to imagine how tired you must be. Bless you and your son. What a worry for you all. Don’t worry about other people. Hopefully you will see an improvement in his sleep soon
AMAZING…….. is the only title for you ger!!! I have tears a lump in my throat… u know where I am and on phone if and when u need anything….. I hope and pray u get rest and Ethan gets better with the new oil xxxx
I’m sure your editors/clients understand – and work will be there again when you’ve got time for it.
I’m sending a huge hug – sounds like it’s been very tough going for you all but especially for you as mum. Mum’s end up with so much going on in so many ways – ‘juggling’ is exhausting when a child is diagnosed with such a serious illness like Ethan.
Sleep deprivation is so hard – and people don’t realise the long-term impact on people.
All you can do is keep going, try to rest when you can, and be in the moment,
I hope Ethan sleeps better, enjoys his films and you all have a lovely weekend away. take care
love Bec 🙂
I can only imagine what it must have been like this past few weeks/months for you. Whilst it’s disheartening to see your readers go, life is more important. Good luck with it all.
It sounds so emotionally and physically draining to have so little sleep and constantly be on the lookout for Ethan. A mother’s wirk truly is never done and you’re an absolutely amazing mother to stay strong through all of this.
sounds like you’re going through a tough time at the moment. I know from working with you how strong you are and I’m sure that strength will bring you through it. Sending best wishes from down here in Kerry.
What a amazing strong women you are. Dealing with everything on very very little sleep. I hope the oil does help and you can get some well needed sleep. x
I honestly don’t know how you do it, hoe you survive on such little sleep. Don’t worry about the blog, it will still be here and I will always read what you write. You’re a fantastic writer and I love your voice. Right now, there are more important things that need to be attended to xx
You have an amazing little boy, and family. Your so strong for them all. Can’t imagine how you keep going. Sending lots of thoughts and prayers to you all. Stay strong and well done.
I saw this and thought about you. Another sweet boy who passed away from Hunter Syndrome. https://www.lds.org/ensign/2018/05/saturday-afternoon-session/one-more-day?lang=eng
I think about you often.