Whilst I sit chilling on the comfy chair with my orange juice, chocolate digestives, duvet and Saturday afternoon films I suddenly feel completely and utterly relaxed for the first time in months. My body aches as it begins to unwind and my head is suddenly not worrying about jobs I need to do next or when it's time to cook the dinner. I hear you thinking well how can that be Possible for a parent with a child with special needs. Well I will tell you it is possible thanks to one amazing place called charlton farm.
Charlton farm is a beautiful children's hospice one of 3 run by the children's hospice south west charity. Charlton farm in set in idyllic countryside just outside the centre of the very busy city bristol. A haven where families like us can come for respite care. All care is handed over to the wonderful hospice carers so that parents can relax and unwind from the day to day stresses of having a child with special needs. The children are entertained with endless activities. A jacuzzi pool with lights and music, a soft play area with a massive ball pool, a games room, music room, messy room, teenagers room and a large lounge to chill out with toys, a fish tank and a large tv. Children are taken out on trips or walks up the drive to see the animals. A large outside area provides places to play in the sand or swing on the specially adapted wheelchair swings or supportive swings for those more able or just simply a place to ride around on one of the special bikes taking in the beautiful array of flowers and greenery in the beautifully thought out areas providing space to chill or to explore. A wonderful willow tunnel just big enough for children in wheelchairs to enjoy walking through too. There are siblings workers to help care for siblings of those being cared for to allow parents more of a break at times throughout their stay.
Through out the day amazing meals are provided for everyone. A chance for parents to enjoy a rare moment of eating a hot meal whilst actually eating at the same time as their children. Carers feed the children allowing for the special moments to be had without the stress of feeding time. There are always delicious cakes to tuck into whenever you feel you need a treat. A lovely chance to enjoy a hot mug of tea aswell without interruptions.
The hospice care provides family's with the chance to be just that, families. It takes away the stress of everyday routines, appointments, medicine administration, changing pads, battling with sleep, feeding and household chores and allows families to spend the special times together. Parents can have as much or as little time with their children as they like. Allowing for parents to have cuddles or play with their children or to simply just unwind on their own.
We have been coming to the hospice since Ethan was 9 months old. We get 14 nights to use a year. Every stay is incredibly special for us. It allows me to complete down time I need and is the only place I can truly relax and switch off. I am able to chill and get full nights sleep which is a rarity at home. I can also go for trips to cribbs causeway for some child free shopping all whilst knowing my precious boy is having an amazing time and being looked after so well.
But we must also remember that the hospice not only provides respite care for families but it also provides the very important end of life care that is needed by so many. The hospice allows for every poorly children who are near to the end of their precious lives to come and spend their last moments together as a family. This could be days weeks or months but it is important that the family can spend those moments together. The hospice has a special feel to it and some times children fully recover when they are thought not to. But for those who don't then the hospice provides the support for the whole family with a special starborn chapel room for the child to be at peace. The hospice also helps with funeral arrangements and afterlife care for the whole family.
There are chances to meet other families who are in the same situation. We have made many friends for life here. Families who are incredibly strong and who all face different challenges every day. Friends who truly understand what we go through every day. Without our care up here we wouldn't have made these friends and built up a support network for life. Being here also provides it's challenges showing you how fortunate you are. Some children are very poorly and it's heartbreaking to watch. Every time I am greatful for our situation and continually think of those who are suffering. The hospice provides more care and support than anyone will ever know.
The atmosphere up here is not sad it is full of love and happiness. Each child is catered for with the same level of love and adoration. Each child's needs are specially met and each child's wishes are met for their stay to achieve full happiness. Ethan is in his element when he's here. He is completely entertained from waking until bedtime (where he sleeps all night!!) we both come away fully renewed but also thankful that we're doing ok and Ethan is so well. We treasure every moment we have together and our thoughts stay with those who aren't doing so well. Truly a piece of heaven here on earth.
Saturday 25 October 2014
Monday 27 January 2014
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.
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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