Hi all how are you today?

Another day has passed, another day close to the book release, Nerves and excitement both, still lots to do my next major step is turning my story board into a book trailer, that requires me to speak, I best get remembering the text for the speaking part. Speaking not always my strong point, but it will be I have to switch off the part of my brain that tells me I cant, that makes my words all jumbled, I never thought I could write until I just did it, and hey presto we have a book.

I think more often then not we are our own worst enemies, certainly I tend to procrastinate and avoid things that make me feel uncomfortable. It comes from years of standing up for my kids rights to support and an education and being powerless to stop exclusions.

With each challenge we face in our family we still get up and do it may take longer sometimes but we do get thier. I think it is why I find working with kids so easy it comes naturally

There is defiantly less feeling of being under a micro scope and a sense of freedom you get working with kids more then talking with adults. You see it is not only my children’s confidence I had to rebuilt but my own. probably why I still find compliments hard, never sure how to take them I am practicing just excepting them with a thank you. Or maybe its some things I have picked up over the years in my want to have a deeper understanding of how my kids feel, they neither like negative input but feel uncomfortable with positive. It is a balance we continue to work on.

I have gone a little off topic sorry about that, I have many words in my head, back to book trailer, I wrote the story board in February planned it out chose the images to go with it, so the hard work has already been done, now I have to show what I wrote by video, that highly personal look in the camera and pretend its my audience with out sounding , wooden or have one tone, as my daughter says Read with expression that's good, but this time with more feeling.

Our Niki is an amazingly gifted writer she has always had a way to add so much feeling to her writing that people believe what she says , once her teacher came running out of school telling me about a story she wrote the topic was shipwrecked I think she was about 7 just before she moved up to middle school , It had the teacher crying it was that good. Niki has this deep connection to the written word English always been her strong subject, especially when they were given creative freedom.

Work Night Shift

So tomorrow I will be practicing, tonight though another night shift the house is silent everyone is a sleep, the kids have been good although little holly wasn’t her bubbly self tonight, think she was very tired. Tom a little angle as usual he actually said a sentence tonight,“How are You” I can’t wait to tell his mummy tomorrow.

Once Tom, Holly and Hayley were asleep I really had a chance to sit down with Ellie and talk about so many different things, tonight we spoke about healthy weights what she can do to help herself be healthy and maintain it she was telling me some of the things she read online, realty

Getting down to what is healthy and not , she said she likes how I explain it and that I am a great motivator, the thing is teenage years are really tough for kids and the most difficult age to speak about sensitive subjects as weight, because you want to address the fact they need to lose a little bit but don’t want to cause those insecurities about it , getting it right between whats not good and what is when thier is so many people they aspire to be like yo-yo dieting. putting people down and calling them fat never helps it comes down to letting them know you really care and want to show them how to do it for themselves in a healthy way.

But then this is a big part of my job as a carer, especially with Hayley because of her Prader willi, examples of unhealthy in both directions either over weight or 2 thin.

We talked about the not sudden quick weight loss that might work for a while but sets you in that yo-yo diet mindset, to smaller potions of balanced meals, and at least 30 minutes of exercise a day we have found with Niki if she does it at a certain time at night before bed it helps with her insomnia, helps her get a better sleep cutting out junk food , we also talked about emotions and eating.

I am so proud of Ellie she has got into a cheerleading team which she is excited about and will really help her have something positive to do. We talk together about her feelings what she finds hard , what makes her angry, what makes her happy, all kids really want is your undivided attention and someone to listen to what they have to say. Ellie used to be glued to her phone and get really angry at not being allowed to have internet when she was with me, but slowly she has show that she has a better understanding of the online world she was give a reprieve and allowed it for a certain amount of time but with restrictions. as soon as she was given the trust she very rarely wants to go on line when she is with me now she would rather just sit and talk. she learnt boundary’s and respect for me. not by shouting or taking things off her she didn’t have them to begin with she earnt them, with a lot of priase and attention.

Caring needs of loved ones

Thier was one thing that concerned me tonight, My mum who has power of attorney for my aunty’s both for health and money, has been working with the social worker’s and home on my aunty Junes needs and weather she needs more intense support , as you know my mum is back on cardiac ward herself so she wasn’t able to attend this very important meeting, she was sitting in hospital reading through the report when it mentioned my other aunty’s name in the report saying she died, it was the first we heard of it, but here is where it is very frustrating my mum phoned upset

Because she though my aunt had died but she herself is on cardiac ward on not supposed to get stressed right now

I told her to wait it might be a mistake and hung up to call the care home, i asked them why they had not informed us because that is a cruel and horrible way to find out a love one had died, only to be told my aunt is still very much alive and it was a clerical error, you see 2 of my other aunts passed away in a care home not even that long ago, it is still very raw and emotional for our family, clerical errors can cost lives luckily this time it was just a name imagine if that was a medicine input, still it caused my mum unsavory stress and upset when a time she needs to be resting.

Those ten minutes of upset, thinking that we didn’t tell her something so important or that everyone was keeping things from us all.

I am making a visit tomorrow just to check on them both, and to ease my mums mind, but that’s not all my aunt before sat in a room and said no to having a peg fitted if needed and no to resuscitation her choice, it Wasn’t just in front of my mum and dad but a social worker was present and asked the questions to which June answered yes or know. some how they have changed what was said to her wanting a peg and resuscitation. and because my mum couldn’t be thier they put it in the report along with the clerical error of saying my aunt died when she didn’t . These are things that are tough to talk about in families especially when it gets to a point of making decisions for our family, even if we don’t agree with some we respect thier right to make choices.

Huntington’s is a horrible thing.

Now I feel better for writing that, thier is so much more I can say on this subject yet still my hands and mouth cannot speak. I do think at the very least my mum should get an apology for the mistake and the upset it caused her tonight.

She is hundreds of miles in hospital away from her family but still wants to honor my aunties decisions and takes her duty as advocate seriously. My Mum is an amazing woman ,I am glad she is my Mum, and she has instilled in me those qualities of carer that I now share with those I care for.

Good night all or should I say good morning ,here it has now turned 5 am, still silent in the house sleeping like little angles still.

much love Faye xx