It has taken me a lot to lie here tonight and decide to reach out in this way. Social media is a huge network of support for me and I am truly grateful how every single person I have come into contact with via this means has impacted my life. Sometimes it is through the kindness of others that it builds up a level of internal reassurance to help us realise that there is genuinely kind people in this world that go out of there way to do kind things for others.
Although I share my story openly with on social media each and every day, what I am sharing tonight feels much more personal, and almost that I am being left vulnerable. It is due to how much I am determined to rectify this situation my family and I face, that I am choosing to stand up and look beyond that fear and back to the reassurance that I have received such wonderful kindness in the past.
As many of you know already, as a family we have needed our house adapting for over a year, as the current circumstances are not safe let alone suitable for my needs. We have spent 8 months fighting for a disability facilities grant only to be met by constantly brick walls created on every path we turn. It is becoming more and more apparent as time progresses that the council feel that because my needs are so complex and the requirements that have been listed are not simple, that no matter what happens: a 30,000 pound maximum of a disabled facilities grant is simply not going to be enough to adapt our home. It has been agreed by everyone involved that I need a purpose built bedroom, wet room and medical storage room in order to live safely here, where I feel I belong. I currently do not have access to a toilet or shower. I rely on my Mum to empty a commode pan for me upstairs so that I have somewhere to go to the toilet. I rely on having a wash down with a bowel of hot water, as I have no way of accessing running water in my home. In this house I can access one room. This room was the family room, it was gone to our dining table, sofas and TV. We spent all our time as a family in here whether that be sitting round the table eating Sunday lunch or playing the most entertaining sessions of 'the game of life', watching the television at various point of the year, flipping pancakes, hanging up the Christmas decorations or making a giant paper mâché elephant- it's all happened in here and it has all happened betwee four members of a family that love each other dearly.
When my health took a drastic decline back in April 2014, there were still moments out of naivety that we thought there was going to be a solution, a fix. That it was all temporary and that soon I would be back in my room planning my next adventure. Unfortunately it hasn't turned out that way and it's important that as a family we are able to face the idea that I am going to have these health difficulties for the foreseeable future and be realistic in seeing that unfortunately things are declining still in different areas of my health.
Short term the the family room became my bedroom, we made the decision that it was so important for me to be home after so long in hospital that we could deal with things like a commode and bowels of water because it meant we could once again become a family. After seven months of me being in hospital and Mum staying by my side to support me day and night, the emotional aspect of our family being torn in two was taking its toll.
To this day I am so incredibly grateful how my Step Dad, Phil single handedly ran the family business, working endless hours to support us as our only means of income as a family whilst looking after my 11 year old brother at home and supporting him through the transition to secondary school. To then go to bed alone, when he had a beautiful wife (and me!) that he dearly missed. They say men can't multitask but Phil did and to this day does an incredible job.
Joshua, who is now twelve had to deal with the confusion of not only me being in hospital and over a short period time having to come to grips with having a very unwell sister, but also the transition to secondary school where he was in a new environment, with a new routine and having to grow and mature to do things like catch the bus alone and navigate himself around a new school much much larger than what he knew and not knowing any of his peers. He was having to get to grips with having a much heavier homework load, something that Mum had always supported Joshua to manage, and ensured that his routine was effective so he could have as much 'down time' as possible and enjoy being a child.
Last but most certainly never ever least is my Mum. This lady went above and beyond to make sure that all of us were holding on tight and dealing with the situation the best we could. Mum made the 80 mile round journey home sometimes even just for a couple of hours to spend time with her Husband and Step Son also, to cook a quick meal and check the washing was in hand. To do all the bits we take for granted because when mum is around they are all so seaminglessly completed. I witnessed first hand the extent of Mums exhaustion, and is it really surprising when the only rest you have had for months on end is from a sponge mattress on the floor of my hospital room? Many nights Mum would sit by my bed to make sure my machine alarming didn't disturb my sleep. So that sleep could give me some time free of the pain I was suffering. Even in this situation Mum continued to help any one that needed her support.
But of course this whole whirlwind of stress and heartache, uncertainty and longing to be a family once again totally aided us in reaching the decision that once I was medically well enough, I needed to be at home. So that we could be our four again.
One of the stress factors I listed was uncertainty. Although my health still holds a lot of uncertainty in the way it could deteriorate in the future, we are unfortunately certain on one thing and that is that through having the knowledge of multiple diagnoses' and specialist medical professions we know that this isn't going to go away as much as we long for it to be a horrible, horrible dream.
What I feel is really important, is to explain how imperative having a suitable place for me will not just change my life, but how it will positively change the lives of three of the most important people I have. We all have those we love wholeheartedly and to think that through my illness they are suffering? It really, really does hurt to a point where I feel tears start to well up in my eyes almost instantly. The saying goes; "money can't buy happiness", but for us currently money is what we need to make the house a place that I can be safe, gain more independence back and so that we can have our family space back.
Our family room no longer holds happy memories like it once did for me. Those memories have been overshadowed by the frustration of feeling trapped writhing these four walls and of all the pain and suffering I have felt whilst trapped here. It hurts deep inside to hear my family spending time together in a small separate room we have, that is inaccessible to me and therefore stopping me from being able to join them and share those precious moments. It hurts to know that my illness is not only affecting the way I eat, but the way they eat also as they no longer have a dining room table to sit round and enjoy the social aspect that comes with any meal. Along with a space to enjoy social eating, my brother now no longer has a table to do his homework out and rely's on a small put me up table that is kept underneath the settee. Although these things may seem small and trivial in the grande scheme of the situation, they are the day to day reminders of how our lives have been turned upside down in the past year and how our personal healing and coming to terms with how we will face things in the long term is being directly affected by the layout of the bricks and mortar we live in.
The disability facilities grant can only cover an adjoining extension. Which poses difficulty for us as this would make my only access to the family home via the kitchen. Something that has been refused from a health and safety prospect as my oxygen cannot be taken through the kitchen as there is too much risk involved with the gas and I particular the naked flames. The DFG would only be enough money to hopefully cover my extension, meaning that no adaptations would be able to take place on the current house hold.
Phil does a faultless job providing for our family. He works harder than most men I have come across and will go out of his way to make sure we all are comfortable and have the things we both need and would like. Joshua and I are not spoiled, and we know that me being in hospital especially, put a massive drain on the funds we have, spending 1700 pounds on parking alone without considering petrol costs, Mum being able to eat, all the equipment I needed, costing thousands of pounds, basic changed to the house to make sure I had new flooring etc when coming home on parenteral nutrition. Phil is one man and not a miracle worker (although that would be great we love him the way he is!) and the reality is we simply cannot afford what we need to change our families lives in such a huge way.
There is only so long my Mum can be lifting me, without causing herself an injury that will land us all very stuck, as Mum cares for me throughout the day and night and I rely on her for almost everything. If I could be hoisted this issue would be rectified but 1) we simply do not have the space 2) when there is only 2 person hoists available and Mum cares for me single handedly 90% of the time- this just isn't safe for either of us.
I've never had such simple wishes in life, but being unwell really has made me realist what we take for granted. To have a flushing toilet and running water I feel like my life would already be so much different.
This is something that means so much to me that I could talk about it forever, but I am going to stop talking about me, and ask to talk about you.
Im writing this because I desperately need your help. I totally understand that many people I know are not in a position to support us financially, and please do not think that I hold that against anyone. What I would like to ask is that if any one feels they can do anything from fundraising to spreading the word to sending us positive wishes and prayers or anything at all that could help us achieve our dream that means so much. I am so so grateful for any level of support towards us and effort put in to take the steps to do so.
For or those that feel in a position to support us financially, I am so so grateful to you also. There is a go fund me account dedicated to raising funds for the build and it can be found at: www.gofundme.com/fundingchloe
equally if you would like to find out more, you can do that at: www.chloesdream.co.uk
or updates on how things are going for me and regarding the build on Facebook at: Building a Dream- Chloe's way Forward.
If you have read to the end of this, thank you. Thank you for taking time out of your life to read about ours. I appreciate it more than I can put into words, but I truly hope that I have explained things in a way that show how real this situation is for all of us and how much it could changes.