The Big Move Back to the Bedroom is Coming!

Connie has not spent a night alone since March. It appears that this is our new way of living and we all seemed to have become used to it. Currently, Connie sleeps in our parents bed with Mum most of the time or if Mum is away then myself or Dad step in. (Dad is currently sleeping in Connie’s bed) For some time now we have been trying to work out how we can get to some sort of normal. With the seizures and getting injuries in bed, we aren’t keen on leaving Connie totally alone at night time, even though many assure us that we can. But we know that she can’t keep sleeping in bed with Mum forever. So here is the plan …


Luckily, Connie has quite a big bedroom so we have put an extra bed into her room. We have bought a new mattress and we are just waiting to get the bedding sorted for it. This will hopefully mean that Connie can go back to sleeping in her own normal bed with someone else sleeping in the bed next to her … but not in the same bed as her. Even though Mum manages it like a pro, Connie is extremely hard to sleep in the same bed as. She is constantly moving and making strange noises that make you think something is about to happen. She also goes through stages in her sleep where it seems that she is not breathing and on more than one occasion when it has been my turn to stay with her, I have leaned over her to feel her chest to check she was still breathing. At the moment, her arm is still strapped up which gives us a small amount of confidence that she can’t hurt her arm but as soon as the sling comes off we are sure that she will be back to flinging her arms about when she is having a ‘moment’ in her sleep which could lead to more injuries. We still use the iPad for when Connie goes to bed earlier than we want too so that we can watch her whilst she is getting off to sleep. She spends most of the time chatting away to herself or shouting orders through the iPad using it as room service but then suddenly she is asleep and you become very aware of the movements and noises she is making. We would be lost without the iPad at night time!


Hopefully, by being in her own single bed, Connie will be able to get some independence back and have her room back (for the off chance that she might decide to go and play with her toys one day). She will also be able to go back to watching all her favourite DVD’s when she goes to bed … at the moment she is having to put up with having Love Island on in the background to fall asleep too! By having the two beds, it means that whoever is staying with her is able to get a proper nights sleep (fingers crossed) as they won’t be interrupted by all of her movements but they are close enough to be there if something happens. We plan to sleep in there with her on a rota spread out between myself (Jordan), Mum and Dad.


We aren’t sure how the move will actually go …as Connie seems to have become very accustomed to the king size lifestyle! When you mention it, she always says yes but that she will be ‘staying with Mum tonight’ so we don’t think going back to her own bed is what Connie has in mind but we cannot carry on with her staying in Mum’s bed … four months is enough! Who knows, maybe one day we will get to the point where we are confident to leave her on her own at night but for now we are definitely not at that place. None of us would feel happy leaving her on her own at night … we would get less sleep than whoever is with her gets now! Fingers crossed the big move back to the bedroom goes well … we will keep you posted!

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