Have an amazing day today 😀❤️🌎
Have an amazing day today 😀❤️🌎
#smile #dance #enjoytheday #love #care
More posts coming soon been so busy with work this week and my children 😁❤️ have an amazing day
#emotions #caring #socialmedia #video #confidence #anniversary #writersblock #family #lockdown
Hi everyone not sure where to start today have had a little writers block lately, my head is spinning with lots of facts thoughts and feelings, so maybe I will start with my garden pretty easy topic its growing so well we are really starting to see the hard work show, the flowers are blooming, the veggies are growing spent so much time out there pottering listening to music and a bit crazy I know dancing in the candle light and moon. That’s me dancing the others were sitting down, Jake kept running out seeing me and face palming. It’s a little joke we have going oh god mums being embarrassing again. I just have been laughing so much lately. Not just a little laugh but a real laughter from the belly, the kind that has you doubled over or on the floor and you can’t get up. Or almost wetting your pants you have to a make a dash for ladies room. You know what has actually made the difference it’s doing videos with Hayley, hopefully I will be able to add some today still having some issues with that at moment. This is where I just write and there is no real order to it, it just flashes in my head like someone pressed replay. Going to do my usual thing though and break it up with some photos just because I sometimes find things easier to read that way rather than super long paragraphs.
We have also had such an increase in wild life butterflies, Bumble bees, birds and hedgehogs, we even had a visit from wild rabbits and a seagull
We have also had such an increase in wild life butterflies, Bumble bees, birds and hedgehogs, we even had a visit from wild rabbits and a seagull
He was quite a character I could not take my eyes off he had the most graceful walk and real stunning eyes you never normally get so close to see them, his beak though look real sharp wouldn’t want to annoy him.
I really love a bright array of colour and scents, these flowers let off, especially after they have just been water. Some are stronger scented than others, and some smell super sweet and the scent lingers in the air. We had to take out all our lavender plants because of the kid’s allergies and it makes there asthma play up which is a shame because lavender has a lovely scent we also extended the path so it led all the way to the eating area.
The one bad thing about gardening in lockdown is the garden waste especially since we have had some super-hot weather here, guys it was the most disgusting smell you can imaging, and guess who got the job of driving it to the tip when they opened yep, good old Me. I get the best jobs actually I used my brain disposable gloves three facemask and a ton of hand sanitizer off I went with the first load, don’t judge me for the next bit it was highly amusing so the queue was relatively short the social distancing measures all set out with barriers for each parking space there were three or four male workers and a man with a van parked a little away from me i get out in full gear go back to the boot of my car and opened it , I seemed to of extended that 2 meter rule to about 20 meter rule as the works all disappeared real quick defiantly no chance of someone giving me the coughs or sneeze, I am so glad I had them masks on . Any here I was like miss universe carrying these super heavy bags i could barely lift of dripping, soggy, garden waste over to the shoot for the garden waste using all the strength to lift them and open them and empty them without dropping that bag in there. Gosh I got covered in gunk, but I was smiling I could see the look on the guys faces from where I was standing I had maybe 2 bags left when the man in the van this tall muscly burly man got out and went to the back of his van he was getting rid of a mattresses .
I don’t know if the wind blew the scent of my car his way but have you ever seen the videos of dads changing their kids diapers online and that heaving sound they make, well multiply that by 10 and this guy with a mattress on his head trying to move as fast as he can away from the smell of my car was the absolutely funniest thing I have seen in a long time. I finished getting rid of the last couple of bags before cleaning up a little before getting back in the car, and getting the next load. My goodness if you think the first load was bad the second load had been sitting there for a lot longer at the bottom of the pile.
I made my hubby load them in the car for me, only he came in holding his ribs, seems he didn’t take my advice and do his boots up properly and the two metal hooks got caught on each other and with 2 stinky bags in his hands he went down right on his ribs, my initial reaction was to laugh I didn’t mean to it just inappropriately came out, what can I say I think I watch to many you’ve been framed video’s with Jake when he is anxious they make us both laugh. I am not a complete cow though. I checked him over and maybe a little bruised around the ribs and a scrap on his knee, and a bit of dented pride wondering if the neighbors saw he was ok. I was happy leaving to do the next load once I knew he was ok. I was home in no time at all; I seem to have been very lucky with my timings of going places when they are least busy.
Just a note to other Hubby’s out there your wife is normally right and if you want to save yourself some Pain my advise would be to listen to what she says
I come into the house rush upstairs to take a bath to get all that gross stuff off, but before I did I stuck my head round Niki’s door to see if she was ok , the screech of get out you stink echoing through the house run into the bathroom laughing . I have a kind of weird sense of humor you defiantly need it to live in my house.
I am going to use a little colour coding just to break up the topics, I am thinking more about reader experience now rather then just writing from the heart.
Niki , Jake and Josh my kiddo’s
I will start with my beautiful Niki. and how well she has coped with a room that was supposed to be decorated before the shops shut down in march she is still waiting for that part of her birthday present but we can’t start till we get some plaster, her room is half packed up in boxes in my bedroom so crowded and cluttered in there in there right now. Can’t wait till both of us get our bedrooms back and all refreshed. She also went and finished her course and had six days back at college for teacher time she went in with her mask and the mind-set to get it completed she now has a level 2 in early years, she worked so hard at her schooling since joining this college, it is so good for her to have that routine and safe space. she has had her conditional changed to confirmed for the next stage of learning level three health and social care, my girl is amazingly good at it and so very compassionate i couldn’t be more proud, she has had to overcome so much and still manages to keep up with her studies maybe with a little bit of help to keep her on track and a boyfriend that makes her feel amazing. She has even been amazing with Hayley when she stays with us and shows great patience with her teaching her how to use her tablet and helping with the set up and monitoring of her online sites and i must not forget her showing me how to set up Hayley’s zoom meetings with the day centre.
My Jake he has been fabulous too working herd on his school work online, he has also now had 2 days at school 2 hours a week , he cant quite understand the point of it for such a short time but i really think its important for him to get sometime away from home and into that school routine so his anxiety does get bad when he has to return full time hw also wont leave the house without a face mask.
We have got some cooking and some time in the garden a few walks, he is making friends online and also gaining experience in what is healthy online behavior and when he has to not talk to people who affect him. building friendships is all about balance if something dont feel right you say godbye and find someone slse who doesnt have a negative inmpact on you, we work and talk alot about healthy relationships in our home. He is also really learning keyboard now form tentative first one fingered playing too one handed and now both hands , he has great instinct and musicality, he listens to a song and goes and practiseses it. I am super excited to continue watching it develope. i love when he comes bounding down stairs keyboard under his arm jumping from foot to foot waiting to show us what has has learnt next. obviously he gets a little performance anxiety so we try to face the other way while he plays, he doesnt get as upset when he makes a mistake now.
Our Josh , Yes I finally got to visit my Josh i have missed him so very much not seeing him since Christmas was a real sad thing i love his cheeky personality , his wise talks this boy has helped his mum and dad out without hesitation on so many occasions I think as a family we have all missed him so much, he is humble smart and funny but also super hardworking and compassionate, he has been like a best friend to me over the years and always phones his mum and dad almost every day, he talks to his brother and sister online sharing funny things together, they quite often come running down and say look what Josh sent , or Josh said th
I travelled alone to see Josh because it still isn’t best for Niki and Jake to get to much exposure while this virus is about we all try to stay home as much as possible, the drive up to Joshes place was super relaxing the roads were empty really not a lot of traffic, I had to stop about three times on the way there, just for a drink and to stretch my legs so I don’t get a bad back. he made me jump I pulled up to his driveway, was just getting my bags ready as I turned round his smiley face was looking through the driver’s side window. I almost flew out my seat. We spent a little time chatting before going for a walk to pick up some father’s day shopping and visit the forbidden planet to get the kids a treat , he also brought his little brother some more books he likes to read there.
The social distancing was real good in Birmingham and although slightly busier than in my small town it was well managed every shop had hand sanitiser as you went in the malls also had plenty scattered around there were very little queues which was good for us we got everything we wanted and needed. There was a moment when the bag broke after we came out of the shop that had me laughing, which set off a couple of security guards laughing too Josh found that bag breaking so annoying.
Birmingham shopping centres are amazing i could get lost in them for such a long time so much to see but that’s for another time, we made our way back to josh’s house and settled to watch princess diaries 1&2 that’s our kind of thing we did together when he was growing up so kind of a trip down memory lane and kind of comforting, he made me dinner pasta with vegetables and pesto Sause I don’t know if he snuck some chili in there it was lovely but super-hot, he was looking at me like I was crazy but literally my mouth was on fire. we also watched a space movie can’t remember what it was called now but it was really cool, Josh being Josh new i had a long drive the next day set a place for me to sleep and went to his own room, I talked to a friend and sent some pictures through to my hubby and checked on Niki and Jake multiple times cause it is kind of what mums do when they are away from their kids. the next thing i know its 8 in the morning, and only a few hours away from saying goodbye, it is always hard to say goodbye for me, but we spent a couple of hours talking and he made me a bacon sandwich and coffee before i embarked on the journey home. I would of stayed a little longer but the suday was fathers day and it is super important to make a fuss of the man who gave you the most beautiful gift of all your kids i will always be super ptound we raised the most wonderful babies together.
The goodbye was less hard because now I had seen him in person I could breathe a sigh of relief knowing he is happy and healthy it is really all any parent wants to know.
The drive home was very tirying had to stop 4 times, the last time because i was starving needed to eat, at least the services had a KfC to fill me up and some coke.the kids new i had some surprises for them too they almost knocked me flying as I came through the door , maybe they missed me but they were chanting, Presents, Presents before my foot even entered the house. I made them wait though goodness I needed the loo and a coffee before I was ready for the sorting the table out with the surprises. every couple of minutes is it five minutes yet was called down the stairs. bless him my hubby had a roast cooked ready for when i got home.
It was amazing they all loved it , Niki and Jake had worked together to put some decorations up and make thier dad some pancakes for his breakfast first time without mum helping them. so all in all that was a beautiful end to the week. The last part of my blog is a little sadder but i can’t talk about my family without mentioning the other baby i had Amy
I know I have blogged about Amy before on anniversary’s but because of the emotions of lockdown and being able to talk about your loved ones and remember them and what they brought to your life is always a positive thing, maybe a little harder to read about for others but i want to keep everything real to what we experience as a family.’
My Amy a beautiful angle that was here for such a short time born at 31 weeks gestation weighing a tiny 1lb 120z, living only for 25 short minutes for those that have only just begun reading my blog or are visiting from another sight,.
Amy was born different after a threatened miscarriage at nine weeks and a scan confirming she was ok , somewhere between the nine week scan and sixteen weeks something terrible went wrong with her i only new because i lost a lot of blood and went in for a check-up and scan, sitting in the room as the sonographer scanned me the very moment you see them frantically checking sizes and there face falls you just no something is right, they leave the room and call in a consultant who then proceeds to scan you they are telling you something is really wrong, something with her head and heart and kidneys . and that i will have to go to a specialist hospital for further examinations, they book an appointment for 20 week scan at the specialist hospital four weeks away, the wait is unbearable you are totally shattered , confused , emotional, your walking round like zombies telling yourself they have it wrong that it’s all a big mistake. you pretend it isn’t happening your walking on egg shells for them weeks till you have the next scan, this was all ready traumatic ,you literally just finished decorating the nursery its cream and green with clowns around the middle you made the curtains yourself the quilts the clothes stacked in a little pile. you spend almost every night in there talking singing hoping it will make a difference to the outcome, nut your also a mum and dad to a 2 year old who already loves this little baby already has form a sort of bond with it. You have no choice to carry on with a smile so not to upset your other child. Yes 2 is young but they still pick up on everything you just want to hold them so tight and protect them. You get on that train that morning to go to the specialist this heart-breaking sense of doom and heavy heart your still got that smile placed on your face your even cracking jokes anything but silence. You arrive and wait in the waiting room to be called you hear every little notice like a big explosion people talking, the ticking of a clock your heartbeat that’s pounding fast you feel your pulse so strong
Then they call your name get you to lie on the table put this warm jelly on your tummy pressing it in deep and quite hard getting you to move into different precision’s not saying a word total silence you and your hubby’s eyes are locked tears in them his holding my hand stroking my hair trying to soothe me and keep me from falling apart trying to be strong for me when he must have been feeling it to. you see it maybe 24 years since this happened but every detail is still there, still raw, still present they finish and turn the light up, go over to the computer giving you a chance to clean yourself up telling you what was wrong it’s all a blur i can’t take any information in, you want to get out of there , you want to scream that their lying, but you sit there with not a word coming out you hear you hubby asking questions but you just don’t want to hear the answers then they say it we can arrange for a termination as soon as possible, i find the strength to say just one word NO !!! They strongly advised me to take it . now i really need to escape they said to think about it and they would make an appointment for the next week with the genetics specialist we leave clutching a printout of her heart rate a picture and a piece of paper that said fatal prognosis. We left and i think i just cried as my hubby held me tight.
we went home and told our families, we sat with Josh and explained the best we could that the baby was sick and doctors could fix her yes we found out she was a girl ,Josh was supposed to soon be a big brother to a sister but he was instead finding out she would go to sky and live in the moon that at the time was the easiest way to explain something we didn’t understand ourselves , i could go into labor any time , she could be still born live five minutes or three days no one could tell us , when or what to expect.
the appointment with the genetics doctor was cold callous in delivery, there was no emotion when she delivered the diagnosis of this very rare condition that only 15 other children in the world were born with, then came the advisory i suggest you dent have any more kids it could happen again and to further add trauma she said that any children i already had could be a carrier. i didn’t stay in that room i just got up and walked out of the hospital i couldn’t breath. i was shaking i felt so sick and dizzy and confused i wanted to be home with my son and hold him tight and never let him go, so i carried her for as long as my body would allow and for as long as she needed to be here, my hubby was working nights about 40 minutes away when the time came at 31 week bleeding heavily i got into the taxi with my mum while my dad had josh at least that’s the way I remember i got a message to my hubby who had quickly left home i lived five minutes from the hospital by the time i arrived and got hooked up to the monitors in a private room , i heard the screech of tyres i knew he was here they offered me pain killers but i didn’t want them, i wanted to be alert for when she was born about five hours into labor the doctor who hadn’t left my side who had already finished her shift ages ago spoke with my hubby and they decided to give me meds anyway giving birth is tough but giving birth to a baby with a brain on the outside was not an easy process i wanted to feel pain , i felt i deserve it ,what did i do to make this is happen .why me why her why us . And there she was they placed something over her head and i was so sick my body racked with the shakes and adrenalin from birth. she was laying on the bed they picked her up and she opened her eyes and looked right at me that last mother and daughter bonding moment they placed her on my legs and listened to her heart neat as it slowly went away, they passed her to my husband whilst i finished the process of birth , then took her off to get a picture of her and do her foot prints and hand prints and a little bit of her hair as a keep sake they cleaned her dressed her and placed her in my arms my mum and my mother-in-law came in to meet her everyone was crying ,Amy had an effect on us all but as a Muma the sparkle in my eye disappeared this blank expression replacing it i couldn’t cry ,talk move i felt paralysed .like a part of my heart and soul had died that night. When our mums left we were asked to leave the room while these four doctors came into the room to run tests and take some tissue samples from her head when we returned the large swelling wasn’t so large but all i can remember was her blood on the ribbon that held her little bonnet on. we stayed the night in this room my hubby emotional exhausted was asleep one side Amy in a tiny mosses basket in the middle and me the other side i didn’t sleep i held her perfect little hand all night whilst hearing other babies crying outside my room , then morning came and they come to take her and they needed the room so we had to go empty handed my tummy still in pain walking by happy parents also leaving but with their babies and that was it we had to wait three months to bury her as she needed an autopsy , when those results finally came in that she didn’t have this rare decease it further made us wonder what caused it , but they did say there was no reason we should go on and have healthy babies in the future and that our Josh was no longer at risk of being a carrier go home and put it behind you. i never once got counseling , the funeral was simple with a priest and some family and 2 of my midwives in attendance. So now you see why you may move on but you never forget any detail, it just hits you when you least expect it and it all comes flooding back.
so to kind of finish off this year being in lockdown being away from family, visiting her grave they affected me different to every other year this year when i went to place flowers i was so sad i sat on the wrong grave for ten minutes trying you feel a connection with her but there was nothing then i realized my mistake and felt so terribly guilty you see she doesn’t have a head stone she had little things and they have all disappeared again accept for one thing the little glass jar Niki painted on year i saw that an new i was in the right place because it hit like a sharp knife in my heart i could breathe but i stayed for half an hour then i visited my 2 aunties who we recently were buried, it all became too much i was so sick, i sat in my car and a wonderful friend helped me they talked and told me it will be all right they messaged and kept me company till i could breathe again, and that i will never forget for as long as i live ,
so sorry if that was hard to read i can now just have some peace for a while its out of my head again
Goodnight much love Faye xxx
I will leave you with a happier photo
I will have to do a follow up with other news its late and i am back on shift with Hayley all week
#emotions #funerals #inmemory #covid #huntingtons #care #family #love
I dedicate this post In memory of my Aunt June Hord 3rd of June 1958 April 2020
As you probably already aware from previous post that my aunty June recently passed away of Covid -19 , cause of her death and secondary cause Huntington’s disease well not so recently it was actually in April, it is just that it took time to arrange the funeral due to the covid crisis.
Let me tell you a little about my aunty before the Huntington’s became the thing that affected many parts of her life, she was one of the crazy aunties a little like myself in that she loved to dance her and my other aunty Christine one of her sisters introduced me to the joy of pubs and night clubs when I became of an age to go. we would all dress up in our club worthy outfits and make our way first to the local then on to the local club where we would hit the dance floor without a care in the world and dance the night away,i recently just started the dating scene but never really was bothered too much about that i was just loving the freedom of being on that dance floor, and boy could they dance.
June had a tendency to place her hand bag on the floor and yes in them days we really did dance around the handbags . Both June and Christine loved each other a lot but boy you wouldn’t want to get between these too sisters when they were arguing. June I Believe was no longer married at this time and had 2 children, her beautiful daughter Stacey.
Also a son but for reasons I don’t want to say, he will never get a mention in my posts because he doesn’t deserve it. Anyway One of our nights out ended up with the most beautiful addition to our family our Paige.
June was also a Chloe and Lily, they didn’t get to be at the funeral neither did her sons children Grace and Millie.
For me their was very happy early memories of her but for her girls those memories were taken away by the Huntington’s to June’s children my parents were like second parents who stepped in when June was not able to be the mum she should have been not because she didn’t love them but because she was ill it wasn’t really till Paige turned 14 that we really started to notice the signs of the illness and only after Paige went to live with my mum and dad that the progression of it got worse. we managed to get her some home care but one of the carers that were provided stole from her, not just a little bit but systematically as soon as her money went in her bank, it wasn’t until they tried to apply for her birth certificate we were alerted to what went on. she was a brave woman and with our help we reported it to police and June went to court even with her Huntington’s and wanted to see this woman never did it again, sadly June wasn’t the only one this person did it too, she continued to live on her own for a while but she never really regained trust again for home help she had a fall and ended up in hospital where they discovered some old heeled broken bones, we had to fight real hard to get her into a care home with more specialized support, she went to the same one as her sisters and brothers and great uncle David were at. David ,Pauline later 2 more siblings joined her, and she lost some for legal reasons I cant talk about this beautiful part of my families journey at this place other then we lost uncle David , followed by great uncle David then Christine and Susan. all in such a short space of time its been so hard on all my family, The next sibling that passed was uncle Mickey he didn’t have Huntington/s but it was a sudden death of a man that was physically healthy and just popped home from work . June and Pauline were moved to a new care home together where Junes life sadly ended this care home were and are fantastic and still caring for our aunty Pauline who surprisingly was the first female of the siblings to be diagnosed with it her oldest Brother Jimmy who also had Huntington’s passed away a long time ago after being hit by a car , but she has this strong will to live. so out of the 11 brothers and sisters and just before lock down we buried my aunty violet who died suddenly at Christmas.
So now there Is my Dad, my aunty Barbara, aunty Pauline and Mark left uncle mark is the youngest sibling and he also has Huntington’s but for now he still lives at home with his daughter,
At least June and Pauline were together at the home there bond stronger then ever .
The funeral a cremation was just so traumatic to go through because of the social distance it made it feel so wrong to say goodbyes that way, only 7 of us in attendance her 2 beautiful baby girls, My mum and dad me and My brother Chris and Hayley.
we had to stand 2 meters apart by the hedge while the funeral car drove up we didnt get to have family carrt her inside we could stand close see see her carried in, she was wheel in there ,once she was in place we had 2 go and sit on the chairs where they were layed out, Hayley is special needs so not being able to sit close to her was very tough. or hug anyone. and while the whol,e thing felt very dijointed and some what cold , my amzaing Mum had been sorting this out while she was ill herself she came despite it, there was no way we would ever of keped her at home shielding , the docs gave her ok to attend.as we took our place Hallelujah by Leonard cohen played, followed by the reading by the celebrant and The psalm 23 was read.
My mum choose a poem and bravely sat in her chair to read it. I am going to share it because it was beautiful. it was so hard on her girls because they would of been thier for her final moments if they were allowed, but they just feel roobed of that like they were robbed of thier mother most of thier lives due to Huntingtons.
If i only had five minutes the day you passed away, i would of had time to tell youall the things i wanted to say.
I never got to tell you how much you ment to me or that you were the best mum better then any woman could be.
The last time i talked to youi wish i would of know, i would of said i loved youand kept you on the phone.
If only i had five minutes the morning you passed away, i’d give you one more hug so tight and see your biggest smile.
I’d tell you that i don’t think i could live without you even for a little while.
Id kiss your cheek and take your hand and tell you it’s ok to go. And tell you that i would miss you more than you will ever know
But you were gone so quickly one last car ride you would take. before you even knew it you were standing at heavens Gate.
Now god has called upon youits time to get your wings. to leave this life behind you. And enjoy Heavens beautiful things .
So wait for me in heaven Mum,D ont leave me to come alone.
the day the angels come for me be there to bring me home.
Such a powerful and beautiful poem I am not sure who wrote it but it was a beautiful and biffiting poem for my aunty June and her girls and all of us just typing it out now has brought tears to my eyes, it truly touched my heart, and reminded me of my baby angel amy maybe it is just a switch of children i look out for hers and she joins mine,
She is with her mum and dad and many brothers and sisters sometimes after a funeral you look out for any sign they have arrived in heven that night as i drove to work this beautiful rainbow crossed the sky and it reminded me of something that was said at my uncle micks funeral , His grandkids had some skittles you no the sweets and they were all rianbow colours, someone said i think it was there mum when you see a rainbow think of grandad, the day of mickeys funeral there was a double rainbow it was like thier grandad had met up with his step sonwho passed, so now seeing a rainbow will make me think all my aunties and uncles are in heaven together, i know them all well and the Hords will be having one very big reunion party. like they diid when they were here.
After my Mum read the poem it was my turn to get on the stage and say what i remembered about june but also to say this.
Being a mother is not always about being thier every day doing the job of bringing you up the day to day nuture love and care, Sometimes being a mum is different sometimes it is handing over your babiies to someone you trust to do all the things you couldn’t, noing they are in the safest hands noing they will love you like there own and give you the skills you need to take you to youre grown up life. its being proud of your kids and loving them but not being able to show it, its signing the forms so you can go to uni, she did love you she was just ill.
The lords prayer was the next thing before another song her daughters choose.
Anything for you by Gloria Estafan. for the girls the words are maybe away to express when they no longer could stay with thier mum “since you said were through” these girls or know one should ever have to go through that.
Huntingtons is horrible but covid took the last of junes life the last of her kids memories.
With the the celebrant going to the coffing and bowing his head in respect and leaving us in the room to take our last few moments thier ,the last song came on, I choose this one.
we left the church and the girls hearts were braking and i dont care if it was allowed or not i oulled them in and gave them a big hug, we all had masks on there isnt any way as a mum i could just stand there and take that.
There was no after get together no final celebration of life we will do that when our whole family can get together. we will give her the biggest send off and scater her ashes somewhere beautiful and free. Just like she is from the confines of the Huntingtons.