#emotions #caring #family #love

Good evening all I hope your day has been a great one.

Where do I start this Blog? Oh yes, I have decided to download Grammarly hope it helps improve my writing and works a little with the editing.

Great Quote my positive every Morning, is simply saying Good Morning oh and a coffee without it I am not very approachable. what gets your routine going in morning? is it the same thing every day or changes.

Family

So much has happened since the last Blog update. It has been a slight bit more emotional this week has been a more challenging one we had the very sad loss of my uncle Mark and to be honest it’s still not sunk in for all of us. We are going through the motions of carrying on like we always do. His Beautiful Girls are sorting everything out for his goodbye. I hate goodbyes they seem so final but it never is they are always with us in the things we carry on doing after they are gone. the places we go, or have been with them the people we love our memories keeping him with us. I have been pretty busy but have had some remarkable friends who have been a huge support the last few days and it has somehow made it a little easier to bear.

Our family has been through a lot of sad goodbyes and although resilient and we somehow move forward the feelings of sadness spring up at random moments. We lost many before covid, one who lost their life to covid just as we went into lockdown for the first time and now uncle Mark as we embark on leaving lockdown. This Goodbye at least a few more of our family can attend, Aunty Junes was only 6 of us so not everyone got to say a proper goodbye this I think has had an impact on all of us and maybe makes uncle marks sudden death a huge shock. Many f them had Huntington’s but that was just a secondary thing and not the actual cause of them leaving us. As a family, before we never much spoke openly about it but over the last few years, I think we have got good at sharing it and how each part of our family is affected, there is still a lot of stigma around talking about its impacts on families. We all wish it wasn’t part of our lives and wish it was something that could not carry on to our next generation.

My dad once wrote that he carried a secret friend, who followed him everywhere and its Name was Huntington’s, it stole his family. The truth is it has, but it didn’t take the person. My aunty Pauline is still a very strong-willed woman she is still here not giving up. Uncle Mark was an amazing dad and grandad he loved Man U. He had a funny sense of humor a friend to everyone, Not afraid to tell people he had Huntington’s and ask for help. Christine was so beautiful loved to dance she was compassionate caring a great mum. Jimmy, He was very colorful one of my memories of uncle Jim was when I stayed at his house when I was a little girl I got homesick, so didn’t stay long but he took his teeth out and put them on the dinner table, kind of freaked me out., and he was a very noisy eater, I think a few times I have said to Hayley when eating don’t slap your chops you sound like uncle Jim. June and Christine used to take me to nightclubs, June would put her handbag on the floor whilst we danced. Yes, we English girls used to do that a lot of dance round the handbags. Not sure if that is a thing that still happens I haven’t been to a nightclub in so long. When you lose someone all these memories of everyone connected to them pop up, During the send off’s you reminisce and their kids get to know another part of their family member they didn’t get to meet the one before they were born each little clip showing another dimension to the person they love. Uncle Mick loved a good bet he was a hard worker and very much loved stepdad and grandad. Our David he was a charmer Blond hair striking eyes, Him and uncle Mark were very close lived close by each other. June and Christine used to have some huge sibling fights but in the end, they were inseparable. Sue was a little harder to know, It was because there were gaps from when I went to hers to play with my cousins as a child and when I saw her as an adult, by then the Huntington’s had made her memory change things and the mix between what was real and not all though not funny did give us a few smiles not at her expense just because it was a little bizarre kind of where did that come from. Aunty Vi and aunty barbara moved away, Vi was I think the quietest of all our family she, and aunty Barbara she visited before covid, it was so nice to see Junes surprised face when I walked into to the care home with her sister, instant recognition. Huntington’s can take a lot away but it can’t take that sibling love.

I think that’s all my dad’s siblings, Mark though was the baby brother to them all. I hope they have all met again and are with my Nan and grandad.

My nanny was are a very strong woman, outspoken I remember always dressing in smart clothes, and the time she made us scared of thunder telling us to hide under the table, I am still not keen on sudden loud noises. People used to think my nan was drunk but we never knew then it was Huntington’s or what the chorea movements looked like or even the mood swings that came with it, more so with some of the female members of the family than the males.

Yes so that’s what has come to mind tonight, I continue to find writing a good therapy for myself, it’s a way of processing and remembering I don’t want to forget a moment of my family good or difficult I loved them a lot, and always will. with me always as I go through my life.

Hayley

Excuse clutter in back ground that’s why I some times change photo back ground to hide chores I need to do, lol A beach is such a better back drop. lots of changes again this week for Hayley and we also have to choose her new routine for June with the day center staff. I say that but it is no longer the community day center, still not sure it will work for Hayley if her routines are changed to much she gets a little bit with drawn, this week it’s understandable as Mark was her uncle too, and Hayley doesn’t quite process sadness the same as others we are keeping eye out for any seizure activity because sometimes stress brings them on. Her diet is going so well though she has hit half a stone in weight loss in three weeks she is definitely motivated to do this.

So Zooms are going to become less and out and about in community and community hubs.

Tom and the Kiddo’s

I had a lovely time at work on Friday’s night shift Tom and his family are now on a weeks issolation before his operation and Nanny is coming to spend time with the girls. we can’t wait to see her.

There was singing, dancing, reading, bath and massage, tooth brushing and photo bombing and all kinds of crazy Emo and chatting going on.

Niki and Jake

Niki has now finished this years course she goes up to the next level in September, and we are so thankful to the college for lending her a laptop while hers needed replacing it made it easier for her to access her course while on the last lockdown. Jake has had lots of in class tests and is due to finish next Friday, he does have his six form preparation and transition work to do for six weeks. through Google class room so home learning will resume after half term he will only have to go to school if he hasn’t finished all his assessments or to do more so school can show evidence of progression.

Jake has still been eating some chicken so that is another food we have added to the list all though his dad nearly stopped that he tried a piece of chicken and put the bone back on plate and it touched his food, he would not eat the piece it touched. It takes a small thing to stop him eating things the no food is allowed to touch each other on the plate still exsist even if it’s his safe foods. baby steps with eating still we continue to have a relaxed approach as this seems to work for Jake no pressure at all with food, we take it at his pace. we have had to put up with a lot of judgement where food is concerned over the years it just adds to the anxiety for him and as us as parents. believe me I want my kids to love food enjoy it experiment and try new things but I also know it’s an eating disorder and he needs to have control about it to be able to eat.

He is showing more interest in food preparation, and smells and we are exposing him to cooking together growing together using the senses. He changed the Pringle’s he eats now to spicy BBQ with added chili the poor kids came down and had to down some water but he does love it. He keeps making remarks like if my taste buds don’t work I would eat everything, that’s why he thinks eating spicy Pringle’s will make them not work any more. That his perspective he wants to lose his sense of taste.

I think before on one of my earlier blogs I shared some photo’s of Billy Bones the national giographic magazine that came with a build a body and helped jake learn about how a body works and all of the things to do with the body, that really helped with helping him understand himself a bit, it also helped him be able to communicate a little better with doctors, we also watch medical programs together just so he can be exposed to seeing needles and some tests they do at hospitals so he can not be so anxious at appointments. he has managed to be able to have dentist visits and blood tests since then sothis is simple things you can do for any kid really to help ease there anxiety.

We also down load a scetch of a body the back perticually when he had to go to doctor for his back he was then able to put little circles where he felt the pain so doctors could get a clear picture of what was happening. It really is all about adapting things to thier communication style. Sometimes he isn’t always clear on verbalising how it feels. so things get a little difficult.

Jake took this picture the other day on the way home from school I loved how the sky looked the clouds were so low.

Emo is still a great comfort, and a smily presence.

Thats my blog for Tonight, I will leave you with a song upbeat and from a program my kids loved. there is always Hope.

Good night Much love Faye xx