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A New Adventure

Tomorrow is a big day for us! For the last 3 years Ethan has been seeing his Daddy at my house/flat. Every Tuesday Ethan and Ashley spend the day together. It's Ashley's day with Ethan but he's never had anywhere suitable to have Ethan so I've allowed him to use my house so he can see Ethan. This has not been an easy ride by any means. At the start when Ashley first left it was one of the hardest most challenging things to do every week. To have the person in my house who left us. Yes there have been arguments and disagreements but I kept on as I wanted Ethan to build a relationship with his dad. A lot of people haven't agreed with my decision but I feel this was the best option for us even if it wasn't easy. I very rarely get a lot of time in my house to clean or tidy so my one Tuesday a week without Ethan should be when I get it all done but that's not been able to happen. Having ash and Ethan in my house every week whilst cleaning was too stressful. In the beginning I went back to work so this wasn't a problem I just dealt with it all which made it slightly easier. But working with a child who had 15 seizures a day and hardly slept took its toll on me. I was constantly tired, and constantly trying to fit work, cleaning, appointments and 24/7 care for Ethan all into very little time. Giving up my job was extremely hard and not a decision I took easily. I had worked hard to get where I was. I had studied hard at uni and was doing something I love with an amazing team of people. It wasn't just a job it was a career. I had to think of my health and what was best for Ethan and I. Once I gave up work things were slightly easier but with a child like Ethan who needs constant care I still struggled to fit everything in and wondered how I had ever managed working aswell! When Ethan was 2 we got 2 year old funding which meant he could go to preschool for 12 hours a week. As he was little I booked him in for a couple of mornings. This gave me a few extra hours to go food shopping and have a quick clean. This was good for a couple of days but it soon became apparent that being in an environment with other children meant Ethan would easily pick up germs and be ill quite often. So I once again found myself trying to squeeze everything into a Tuesday. I was getting no respite for my self during the week and with no way of resting at night as Ethan still doesn't sleep well I was getting more and more tired! When Ethan turnt 3 he got funding for 15 hours a week. I booked him in for 3 sessions a week. Two sessions being 9-3. I thought this was amazing and for a few sessions again I got lots achieved but as we had changed setting and The cold weather made an appearance Ethan once again became ill! He has had lots of illnesses and this has meant a lot of time off preschool for mummy cuddles. In amongst this are seizure days where Ethan needs to be at home to recover. So 3 years later I still find myself trying hard to keep on top of a poorly little man, deal with seizures, go to appointments, clean my flat, food shop and chores. I wanted to go back to uni to top up my degree but found it too much. I've added in some volunteering but still I struggle some weeks to cope with it all. Don't get me wrong I love my life however hard it is and I'm not moaning I'm just saying it how it is. It is hard and so tomorrow is the start of what I hope is going to be a massive positive (also scary) change. Tomorrow I will have my flat free for one day and night a week. I have not had a regular night a week for me to get some rest and sleep so I am very much looking forward to this. I am lucky if I get 6 hours a night sleep. Most nights 1-4 are normal.I am shattered all the time and to have some freedom is going to do me the world of good. I will be able to clean and tidy and get things done but also have time to relax and look after myself. However good this sounds I am very nervous about my little man going! I know he will have an amazing time and will be more than well looked after but as much as it's been hard to have them here it's going to be hard without them. I've still had some control over what Ethan does and how he's looked after but I'm having to let that go and trust that everything will be ok! I know it will deep down but when I'm so in control with every single part of Ethan's routine every single day it's going to be hard to adjust. A lot of people judge me for not going to work but I hope I've explained the reasons behind me not being able to work. My son comes first and he needs all the care and attention he can get to help make his life as comfortable and amazing as it can be. I'm looking forward to spending time alone with my boyfriend and friends and making time for myself. Being a full time carer is hard and I need to be at my best to help Ethan in every way I can.


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