Thursday, 28 July 2016

So much face rain

Yesterday the local council came and took away Jack's bed. One of our dogs refused to leave the room and lay under the bed. No matter how much I called on her, she would not leave the room while they dismantled the bed.
The bed was funded by the NHS so suffice to say it had to be returned. Whilst I had no issue with that, the fact that they previously had tried to take it back 2 weeks after he died was heart wrenching to say the least and I told them no.
Yesterday morning when they called, I wasn't given the option of refusing, they wanted it so it was only a matter of when. They suggested that afternoon and I agreed.
When I put the phone down I could barely breathe. It has only been 5 and a half weeks since he died. That bed represents so much to me, in ways I couldn't even begin to tell you and now it was another thing that was being taken away.
I cried and cried and then I gave myself a talking to and told myself to suck it up. I went into his room and stripped the bed of all it's bedding, cleared the equipment still left under his bed and put the bedding in the laundry basket. Just ordinary everyday stuff that nearly brought me to my knees.

Loki lying in down on the space where Jack's bed had been

So much of what is happening, I have no control over.
Things have been made even harder by the fact that his father who had very little to do with him the last 18 years withdrew all financial support the day he died.
Although in my head I expected this, the body blow it has dealt me is beyond anything I thought I could possibly feel on top of all this grief.
I have been both mum and dad to his two children. I have been everything to our son whose health needs were so complex that he required care 24hrs a day, 7 days a week. I looked after him myself until he was 14 and his health deteriorated so much that I needed overnight care.
FOTY (father of the year) once told me that it was my choice to look after Jack. Did I have a choice? I gave birth to him,  so as far as I was concerned that was the only choice I ever had to be his mum. I didn't realise that having a child with health needs, who was not society's version of "normal" meant you suddenly got to choose whether to look after them or not.
I chose to be his parent and he chose not to be.
Jack's dad is a wealthy man. He had planned to support his son for the next ten years financially whilst he was still alive. He has just taken his daughter on a safari holiday that cost $20,000.00 and spent £30,000.00 on a new car.
By withdrawing his support financially he has thrown mine and Holly's life into further disarray and turmoil as his financial support was what paid for the roof over our heads. It also covered the huge heating and electricity bills that incurred keeping Jack warm and his vital equipment fully charged not to mention the extra costs of having carers in your home every night throughout the night.
Both Holly and I are barely able to function, the grief is so damn raw. I can't even remember how to make a cup of tea at times never mind think of finding a job!
Benefits at this point wont cover it so I need to do something else.
So we have started to sell off things just to keep afloat. Among them, precious things that belonged to our beautiful boy because his stuff cost the most. Everyone knows that anything you have to buy for someone disabled costs three times the money so it makes sense to start there.
People keep saying to me: take your time, do this and that when you are ready.
Ready, I am a world removed from but needs must and I can't afford to be precious.
"Do you not know that a man is not dead while his name is still spoken"
                                              Terry prachet

His financial support would have given me the chance to take my time to adjust to this new life without my beautiful boy, to just allow me time to grieve and get my head around this huge loss and heartbreak.
No, instead, he is far too interested in punishing me for being the parent he couldn't be, putting Jack's needs before his.
Ten years ago, just after my mum died, he filed for divorce after I had been trying to divorce him for 4 years. He thought he could kick me when I was down but I got up and fought him to keep this house as it was our home but also as an unpaid carer I had no financial future prospects apart from the house. I  got the house but unfortunately complete with mortgage. 
Now here I am again, fighting to keep our home so that I can have one less traumatic event to go through. I know that Jack would have hated this happening to his sister and I.
The only way is up..........

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