HI all how are you doing?
It been a few days since the last update, the reason for this is it has been kind of full on and crazy here, good job i talk about emotions as thier has been a lot flying around. where too even start is the hardest part. My uncles funeral will be at the beginning of September and although we are going about our days as we normally would it is still very raw for us all. my family has had more than its fair share of losses
Starting way back when the first person was diagnosed with Huntington’s my Grandmother , My other Grandmother passing of cancer not very long after my daughter passed away, and for us thier have been many more since then.
I guess when thier is such a sudden unexpected loss it makes you think about them all the more, I try to look at it from a different perspective who they were as people what they liked thier personality and what they each brought to my life, and that was just love, respect, family.
Our time with Tom visiting was great, Niki had the freedom to make arrangements for her and Tom , A date at a restaurant, going for walks, spending time together, I was designated too MUM’S TAXI roll.
They even had a night out at the local for karaoke with Grandad, Before Toms parents arrived from Holland for thier camping holiday which is where my Niki is at the moment .
She looks so happy
What a night out it was when we went to the local the other night Hayley DJ dad and myself. It was fun relaxing and refreshing.
Hayley also Had Dress up day at the day center she choose to dress as a pink lady and won, had to have a little laugh, when I said how many people dressed up and she said only me.
She has such a sense of humor does our Hayley
She is starting to want to dress up and role play like Us, wants to join in on Tik Tok’s and just have lots of fun. This i think is so important and helps to take away the things that make us feel sad, gives us something positive to look forward too. A great way to be express feelings in a fun way.
So with Niki away it is so very quite just me my hubby and our Jake,spending quality time together.
Really early on Sunday morning we learned my niece and nephew and thier children had been in a serious car crash, a speeding motor bike hitting thier car at 100 miles per hour, they are so very lucky to have got out of it with just a few bruises and shock, I felt so sick when I heard about it.
Things could have been so different Sunday, I am thankful they are back home safe. I hope they don`t wait to long to get back in a car so fear doesn’t set in. Maria is my Greek niece her hubby Patrick is Irish I would say they had the luck of the Irish and the angles watching over them that day.
Speeding is just not cool, it puts lives of others at risk.
Look at them both completely out for the count like father like son. love this photo something so cute about it.
Yesterday was not without drama though I booked tickets to see Lion King at the cinema, and half an hour later got a call to say Hayley had fallen in the neighbours garden, and hit her face can I take them to walking I was kind of praying I would get back in time for movie but as soon as I got in to the a&e department and saw a 2 hour wait time I didn`t look very hopeful she was seen by triage pretty quick but had too wait to see a doctor by this time her eye and check had began to swell and turn a lovely shade of colour. they check her eyesight which isn’t easy with Hayley because she can’t read so they did it with pictures, still this is not as easy either she new the train shape, the dog and the cat. But didn’t know the other shapes and it wasn’t because she couldn’t see but that she didn’t know the shapes.
We saw the doctor and I can say he was brilliant he spoke to Hayley looked her in the face while asking questions on how she fell, what her pain was like for Hayley it is difficult her pain thresh hold is very high so hard for doctors to tell really.
It was a bit like when she fell and broke her wrists, she didn’t complain about the pain till she saw the swelling that’s how she knew it hurt the same with her face this time she knew she had swelling so pointed to that part.
She also had a grazed to her knee and to her hands, very important to get falls checked out especially on special needs children and adults. A knock to the head can have consequences . thankfully her glasses stopped her actual eye from being damaged. But now we need to get new glasses.
I have thought long and hard about if i should share a picture of Hayley’s injury for 2 reasons it isn’t nice to look at and what judgments will come but the fact is she fell and it does happen from time to time a little bit more often lately, which we have been speaking to doctors about,
But why edit out reality, it has happened it was an accident
It comes with disabilities sometimes how can people understand if we only share a little bit of it, how can everyone around the person wether at home or day centers or out and about, or doctors really pic up on things that need looking into a little bit deeper as thier maybe an underlining issues that needs treating if we don’t show reality.
So for that reason I will share
It is going to take a while to heal anyway and she likes to take photo’s for her books we make, it is very much part of her routine now sharing her story.
I spoke to her day center today as she will be returning tomorrow about keeping a close eye on her walking habits they also say she walks like she is on a mission sometimes bumping into people, she walks with her head down really fast.
Jake and I made it in the end to the cinema just a little later than planned I managed to but some more ticket’s.
Lion king was awesome worth the wait.
Today Jake and I went to town Book shop time, he wanted some more books as he loves reading.
Was a fun one on one time
What else have I been up too extra shift with the kids we got up to all sorts, makeovers, dancing, talking, watching movies. So much to catch up on together.
Even the Dogs joined in on the party while mum and dad were out
Ellie thought it would be funny to photo bomb the picture , Pre teens what can I say she belongs to someone else
Tom had fun with Emo but we all tired him out he went to bed and straight to sleep not long after.
I have booked myself another event today, at our local library in October will update the events page with details very soon. Still ironing out a few issues but it is available to purchase .
Little Holly is now a published author too, she just had her work picked for publishing with young writers.
We were celebrating this tonight so proud of her
Good night all much love Faye xxx