Emo the Emotional Elf #author #insperation #children #books

Hi all just got back to Tom’s Hotel and while Niki has gone off with him and his friends I am sitting here recharging not only my phone battery but myself before the Journey home, had a lovely day out with Niki, Tom and his friends.

We walked alot was a struggle at the end for Niki but we got to visit all there favorite places and some new ones, Niki’s brother Josh sent some money through for her birthday and she got a new pop figure a frog for her collection, Tom got her a wand from the really cool Harry potter shop, and we had just enough ourselves for this cutetist Teddie in the Disney store think it was from lilo and snitch, any way it was on sale so even better.

Seeing Niki smile and speak with new people was great, it was worth the day out to get some beautiful photos of her, I think my legs are truly dead from all the walking don’t think we will have any issues sleeping tonight.

We are leaving here for journey home in about an hour can’t wait to get home see my hubby and Jake and just chill.

Some wonderful creative and fun things to look out πŸ˜€πŸ’—

As you can see I have one very happy young daughter today, a smile is worth many miles of walking.

A laugh , happy chatter some of the important things that truly matter.

I am happy to be a bystander in her life for ever how long she needs or wants me to be .

Good night has a blessed and peaceful sleep.

Much love Faye xx

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Emo the Emotional Elf #author #London trip #autism #anxiety #mentalhealth

Hi all how has your day begun?

Sitting in the sun waiting for Niki and Tom, the journey here wasn’t to bad one day tickets not a bad price, bit of a que at station as they have some services limited In the other direction I feel a little sorry for those that have to bus and train to travel this weekend. There are some issues with ticket machines but staff were really helpful and attentative.

Although the train was really busy we managed to both get seats, arriving at Victoria a bit of a scramble and huge crowd getting through the gates. Niki is fab at reading signs and giving directions and the 10 minute walk from Elephant and castle tube to Tim was pretty quick.

We arrived here and Tom met us at the gates and introduced us Niki loudly declaring this is my Mum.😁

Niki brought her stick with her and it will be a godsend by the end of the day so many stairs. Still she was pleasantly surprised when people offered her a seat. She politely declined.

I am just here to walk around and look an will probally have moments of being a Billy no mates, but sometimes the quietness is truly golden.

Window shopping let’s see how Niki’s copes with that , maybe it will give her a new found understanding of money, and using restraint.

She looks so beautiful today.😁

Post more later for now just waiting.πŸ’—

Have a beautiful day

Emo the Emotional Elf #author #emotions #book #appointments #autism #anxiety #mentalhealth #praderwilli

Hi all how has your day gone?

Printer issues

My goodness wireless printers a bit of a night mare , well ours is connection issues posed a huge problem today, πŸ€”

It was already set up on all our devices but refused to see it, then when we finally connected and go to print it says can’t find printer. Who would have thought it would take the best part of the day to sort.

It is only six months old , finally get it sorted only to run out of ink I only purchased more about 2 weeks ago.

Most of it was wasted because it didn’t print all of a border ,sometimes missing on one side other times the bottom. πŸ‘Ž Maybe it’s the mischievous Elves πŸ˜‚πŸ˜‚ still finally managed to print the document I needed in the end good job my hubby isn’t defeated by it and persivered, if I had to do it myself it wouldn’t be in the house right now.

I guess Niki’s picture says it all

The documents were self explanatory, but may not be with out drama to do.

Maybe I should use the zen feature on Niki’s Wii fit , deep breaths .πŸ˜‰

Still not much more I can do over the weekend now.

Tomorrow trip to the capital London here we come.

We were supposed to go up three days in a row while Tom is back over here. But funds were slightly lacking this month, so unfortunately we had to make Niki choose just one day, she did try to squeeze tonight into but sometimes it just can’t be done, Joys of being an adult making tough choises.

They get to visit some of there favorite places , they will definatley be toy stores , comic shops transformers I have no doubt.😜 but also alot of walking, Niki has been having a few issues with her hip lately and is using a stick as she thinks it helps, maybe something that needs to be checked again last time she saw hyper mobility doctor was in 2016 when they said she had it. It used to be her knee giving way always the left side she has most issues with.

She got the walking stick herself the other day, has little cats on it and some of the proceeds go to animal shelters. Something that helps her and animals at the same time 😻

Hayley’s scan

This was her first ever scan, and it was really useful showing her the video of what they ask you to do in the scan like holding breath, rolling over, breathing out . She didn’t find it uncomfortable or funny so that is really good she get tickelish sometimes especially on her sides.

She followed the doctors instructions beautifully, they scan her liver then asked if she had ever had a kidney scan before which of course was a no.

They did say the liver looked fine didn’t say anything about kidneys being fine but I guess that is something to wait till the results are sent through to doctors should be back in ten days.

With Hayley she has an extremely high pain threshold so you really only know if she is in real pain like when she broke her wrists, or the other day some silly person threw a glass and it hit her on the head, thankfully it didn’t brake, just gave her a little lump. I don’t know why people do such silly things like that, or why the person was allowed to stay in the pub I wasn’t with her at the time or I would of sorted it. She now doesn’t want to go back there and it is something she really enjoyed doing and made many friends there.

She loved the bands and kareokee. Guess we will have a look for somewhere else. For a while see how it goes I don’t want her to fear places.

Jake

Jake is having a dad and Jake day, my hubby is on kungfu duty and taking Jake for his visual health check they have finally got the machine back now it broke down in November so really want this check done. The optician did say it was important. And to make sure it was done as soon as machine was fixed.

Lead up to Easter holiday’s

Not long now and we have a few weeks brake from early morning school runs, rush hour traffic, and back and forth running around.

Can’t wait to relax with the kids, and get baking a mixture of English and Greek the kids love making koulourakia, dying the eggs, oh and Easter egg hunt they maybe older and don’t eat much chocolate any more but still a family tradition.

Me and my hubby come up with sad rhymes and clues make them run all the place to find there eggs.

Most of them don’t get eaten last year we donated the ones they didn’t eat to the local springboard project for there children’s egg hunt.

I have said before the kids hate surprises and I like them they have done something for mother’s Day for me and keep trying to make me have it now, but I am making them wait.

It isn’t mother’s Day till SundayπŸ’—πŸ˜

As I am writing this they are upstairs being extremely loud Jake has spots Niki wants to pop them , to much doctor pimple popper, she gets fascinated watching those bids that pop up in your Facebook page or the show on telly 😰🀒

It’s really rather gross. Especially as it’s on the side of his nose he is just at that age, and also is a bit squeamish and low pain threshold i am kind of surprised he even let Niki near him to do it. Yep they are my kids you will probally find alot about there personalities as I talk more about them.

They are fab kids, and make me smile alot

Have a beautiful weekend

Much love Faye XXπŸ’—

Emo the Emotional Elf #author #emotions #elves #book #booksignings #bookevents #speakingevent #booksales #bookmarketing

Hi all how are you all doing today? πŸ˜πŸ˜πŸ’—

Something slightly more positive today, I feel so much better and in the right frame of mind to get back to getting book ready, for re-uploading.

This time as a self published but through Ingram and lightning source.

We had a little tecnicle issue with our printer today as I get migraines sometimes I like to ready things with lots of text in paper form just to give my eyes a rest from screens and sometimes it is a little easier for me to read it without the light in the background.

The marketing material was redesigned with my own publisher name as are the book marks and business cards. The give away bags although this time are only paper as we are in early stages of self publishing with limited funds. Have arrived ready to add logo’s and to put books in at the author signing’s.

I am hoping to make a few sales there so I can maybe get some more reviews to add to the ones I have already received .

The Elves are all lined up on my sitting room window ledge a constant reminder to get to work.

Next job is righting the talk for event, hopefully that will be something a little more satisfying, once completed.

I already have the outline for the next book, and maybe a branch off mini stories on some of the issues to show how we got the kids to dentists and doctors ,and facing there fears. For these small mini books they may even be illustrated rather then photo’s but all will have Emo and his team of elves.

Jake

Jake school has autism awareness week, and he spoke to them a while ago about doing something to bring awareness at his school more because there are a few students attending with autism, I love he now has the confidence to get up and speak or put his perspective to his peers his chosen method is a power point which he has already began to put together he said he is trying to do it in a way that highlights the strengths as well as some of the challenges an autistic student faces in school life but he doesn’t want to reveal to many trigger things like,i.e high pitch noises and how they are painful for him and set off his migraines, the reason he doesn’t want to is some students do deliberately do things because they trigger. He said the other day they had a supply teacher and one of the other students became upset and left the room, to which the class were calling for the teacher to give him a detention Jake said he explained to the teacher he has autism and goes to the base to help calm himself. So he really does look out for his fellow autistic friends, and now he calls them friends instead of aquantances. So that is a wonderful thing. A huge step for him.

I will update with how it went after.πŸ˜πŸ˜πŸ’—

Niki

She has nearly completed her level 1 childcare course and has been put forward for level 2.

She recently had to write a short story book for a 6 year old boy with his favorite choise of character. He loved it and took it to school where they read it to his class, she is now on a second one. She is a gifted writer, comes naturally to her, has always been one of her strong gifts.πŸ’—πŸ˜

So now I continue on the book journey with a new fresh thinking, my brain has cleared some of the things that were stopping my writing enjoyment. I bounce back rather quick.

So I will say goodbye for now, tommorrow is rather busy as I have Hayley’s scan and Niki’s longer school run and to prepare to take Niki for day out on Saturday.

One last thing might give you and insiteful into my silly Brian last week I lost the tickets for last weekends events I searched the whole house and had to re-print them. Today I only went and found them in the printer but turned round so it looked like blanc paper. Totally forgetful either that or the kids were playing tricks on me and don’t want to admit it.πŸ˜‚πŸ˜‚πŸ˜‚

Good night , keep up with your great blogging keeps me company most nights while waiting for children to sleep.

Much love Faye x

Emo the Emotional Elf #author #emotions #babyno2 #loss #grief #diagnosis?

Hard to share very difficult subject. But being open about this may give another mother or father a sense they are not alone in this journey.

Hi all here is the second part of journey to becoming parents, it is only over the last couple of years ,I have finally been able to talk more about our daughter Amy who passed and to be at some peace with what happened this is an important one for me because writing the book and saying a proper goodbye by honouring her in the the book, has brought this peace to my heart.

For any parent the loss of a child is something you never really fully get your head and heart too understand.

But for this perticular pregnancy and birth it was made alot harder by having a diagnosis before the birth made on what was seen on the scans. Only to find out that diagnosis wasn’t true, and that there wasn’t any answer. We have our own thinking’s on what caused it but not something we could ever prove.

So I was 21 a mother of a 16 month old son who had a serious op when born, the I found out on new years eve 1995 that I was expecting again it was such a truly happy moment for some reason like I need Josh was a boy, I new this new one was a girl just an instinct , at about 8 weeks I was hit by awful stomacher bug lasted about 10 days once I was over that I had a threatened miscarriage a scan at about 11 weeks showed the baby was still there and was normal in development. At 16 weeks I had the next scan because I was losing a lot of blood. It was then in the scanning room the look on the lady’s face who was doing it went deathly pale she was moving the scanner over my tummy measuring then said she had to leave the room and speak to the doctor there was just this deathly silence my heart racing I know it something was not right the doctor came in and looked for themselves followed by another,

They told me to get dressed and they would come back and speak to us soon.

Diagnosis

They said they thought she had a condition called Meckel gruber syndrome it was rare and only about 15 cases in the world at that time, But we would need that confirmed by a specialist hospital they booked an appointment for 2 weeks later at a top London hospital at George’s , they would also refer us to a genetic counselor. They said the prognosis was not good.

At that moment my husband an I were just so numb and in shock holding hands we left the hospital for the excrutiating 2week wait. We were hoping it was all some big mistake you heard even tin that time that sometimes they make mistakes, there was only tiny movements at this point but I could feel her move here her heart beat as they scan. She is here and alive.

Travelling to the appointment

We decided to take the train leaving early in the morning we arrived at the train station I think about an hour before the appointment so stopped to have some breakfast before walking the rest of the journey. The same hospital who saved our son when he had the piloric stenosis. So there was this trust that they would know we walked in the room I layed down the lights switched really low it was a very though but quick scan and they confirmed our nightmare and made it real , she had polycystic kidneys barely any fluid because of it but that was not all her heart was affected and the worst was yet to come she had a large encephlocele her skull was not developed and her brain was just outside. Prognosis FATEL!!! I still have that letter. They spoke about termination but that is something I just couldn’t face doing I wanted nature to take its course. I don’t regret that decision. I decided to carry on with the the pregnancy anyway her heart was beating she was alive.

They told us I might miscarriage she might be stillborn, or she could live up to 3 days. But they wouldn’t recusitate her.

We went home in silences intermittently telling meaningless jokes it wasn’t real was it, my mind still not accepting the crule hand fate had dealt us.

Next what do we tell everyone especially Josh he was a baby he loved talking to my tummy noing his baby sister was there.

She moved ever so slightly on the journey home oddly comforting.

We told everyone and lots of sympathy but mostly awarked silence,

What could anyone really say at that point anyway other then be quitely in the back ground.the next couple of weeks was visiting the midwife’s while waiting to see genetic councillor.

She was not very nice in her delevery infact she was blunt and rude, given us the odds on it happening again she just said there was a 50% chance future children would get it not to have anymore children and any children I already have might be a carrier. Maybe she was just doing her job of giving us the facts but it was so coldly delivered I just got up and left I don’t know if my hubby said anything but knowing him he did I just walked he caught up to me wrapped me in his arms I was devestated not my Josh too.

Anyway the pregnancy continued more scans still confirming she had a heart beat but had stopped growing.

Then at 31 weeks gestation I began to loose alot of blood my husband was working about 30 minutes drive away my mum ordered a taxi it took forever to come, we had black bags and towels to put on seats the hospital then was only 5mins away we already called ahead to let them know we were coming in.

Labour had begun I was asking for my hubby I don’t know how he got there but we heard him screech into the car park and then he was by my side we were put in a side room and had this very young doctor who promised to stay and deliver even though her shift finnished in an hour.

The birthing process was natural I wanted no pain killers but after 5 hours of pushing other than being emotional and tired they and my hubby took the decision out of my hands and they gave me a pethidine injections, the reason I didn’t want pain killers what if she was born alive and I missed it missed them pressious moments, at this point the doctor hadn’t left the room and it was probally as devasting for her to deal with than it was for me she did say she hadn’t had to deliver a baby with this devastating diagnosis it was so good and comforting she went above and beyond to see the birth through.

30 later minutes later Amy was born alive and yes he’s disabilities and head was very noticeable as was her poor little bruised face her heart beat for 25 minutes before she sadly passed in her daddy’s arms me the meds made me so sick.

She opened her eyes and her little youngest poked out. I remember her perfect little hands the most more than I remember her poor head.

It wasn’t long before about four doctors came and took her a way to examine her,.

When they brought her back I removed the blood stain on the white ribbon of her bonnet that covered her head and the large encephlocele.

They handed her back and let us stay for the rest of the night with her my husband’s nerves ment he slept I lay our daughter between us and spent all night just holding her perfect little hand, they gave me a photo her hand and foot prints, a cutting of her hair and a poem about still births in the back of the little booklet. She wasn’t still born though she lived. The morning came and they came to take her we had to sign forms for her autopsy. I eyes were blank they asked if we wanted them to sort out the funeral and we said yes at first untill they said she would be burrows in an unmarked grave with three other little babies. So I refused and sorted it myself it took about 6 weeks to get her back for funeral. So hard to hand her over even harder to spend the night on a maternity ward hearing other babies crying while you lay next to your baby who just passed.

Even harder walking out of the hospital seeing other parents taking there healthy babies home. While you walk out having just given birth and you are empty handed breast full of milk ready to feed but noone to nurture. We registered her birth and death on the same day.

The funeral was small close family a few friends,

My husband carting this tiny whitr coffin the short distance from the car to place on the ground where she was to be layed at peace ,and the midwife’s and a priest giving her a blessing before she was lowered into the ground it was sweet service although I can’t remember that part it is blank I was going through the motions but not really there my little son being looked after at home to young to understand the process of death. He just new his sister went to heaven and that when ever he saw the moon she would be watching over him .

The results of the autopsy

They came after the funeral many months later the abnormalities to extensive to be Meckel gruber .

Her heart had holes, her head ,no kidneys , club feet , scoliosis, the extent meant that it wasn’t Meckel gruber it was chromosomal either as they came back normal in myself and her. Further genetic tests were though nessacary but for some reason the appointment never came.

Just nothing and a life of wandering if it was something I did wrong, no answers is horrible. But they said there was no reason I shouldn’t have another child in there opinion and that was the best bit of the worse possible situation.

So that is my story of Amy’s short life. but a life that mattered so very much too me. I was blessed to have her despite it only being for a short time.

She taught me what it was to be a mother just like all my kids have to never give up hope, to be resilient

I there is one thing I know now something that bugs me alot is when you tell someone you kids are autistic and they say at least they look normal.

They make these very unfeeling comments without knowing a person’s whole story so no autism as challenging and difficult as it can be for my children it could have been worse. I am thankful I did not have to bury another child all my kids are perfect and beautiful to me.

Sorry if this makes for sad or uncomfortable reading it is my story and my daughter’s story.

I never thought I would ever be able to put into words just what it was like at that time. And my words maybe don’t even show the feelings of that moment . But now it is said and told she lived. These are things I couldn’t put into the book because it had to be child friendly. Grief and loss of life, I like to remember the person they were before there character there essense the memory.

Much love Faye xx

Emo the Emotional Elf update, #author #emotions #elves #anxiety #autism #mentalhealth

Hi all how are you doing,

Surprises

Yesterday was a surprisingly different day, my family don’t like surprises they much rather like to know what is going to happen before and be involved in planning.

Me I am different I love surprises and yesterday my hubby surprised me he was out and called me to meet him. We had coffee in town together not something that has happened for a while due to work commitments and the diagnosis process.

The thing is it gets like that for couples with or without diagnosis sometimes , what I really can say though it was the best time for me and something I truly appreciated.

Something’s just matter alot despite my quiteness on this perticular subject, it has been easy on either of us these last couple of years,

I guess we tried not to get into things that we would maybe argue about, then blow because in reality they hide under the surface. Egg shells I guess we both walk around on them on occasion.

Just because you get used to just talking about schools and doctors and the kids, I gets a little repetertive not always in a good way.

That’s why writing is a big part of me now just a way to talk without misunderstandings , what we say sometimes isn’t ment to be delivered in the way it is that dreaded words (miscommunication) (frustation’s)

Trying to have your point of view validated without it being interpreted always as a negative.

I truly love my hubby that will never change , but of course to make things different then they were for a while is not as easy either.

I don’t want to take him for granted or be taken for granted either.

Life is so challenging sometimes but right now I feel a little more peaceful and content then last week.

Lots to proceed at one time still affects me alot, I get forgetful or clumsy, and my sleeping and eating patterns get out of sequence , this really makes me grumpy and slightly emotional.

Any way less about that Tom safely arrived home to his family to which Niki is both happy and sad about at the same time.😁😒

Still she will see him in London when he visits again next weekend. So that is all good.

This week, doctors

This week we had a phone call about Niki’s blood tests being back, and we now have too wait for a phone call on the 11th of April to discuss them with doctors this time they didn’t say it is nothing to worry about,I Am still apprehensive about what it will mean if they are positive for factor v liden but I guess I will try to put it out of my mind till then . Plus just recently her hips have been hurting her again hyper mobile it keeps popping out.

Hayley

Her liver scan is on Friday , and with everything getting a little off course I forgot the walking appointment for Jake’s vaccinations, still I have put him down for the April session he will be having them in fact he said he doesn’t need the magic cream now.

Catching up on other things.

I am slowly getting the house back into order, yes just before the holidays where it is going to get all messy again ,πŸ˜‚πŸ˜‚ reality of having kids I think most parents can realtor too,

The book is still being done just need these things sorted first. So I can conserntraight on the directions for next step and not get all flustered with myself , the truth is it takes a heck of a lot to read big amounts of text on a computer my eyes get tired after a while , I have my note book ready to simplify the steps in to smaller sections, if I rush I make mistakes. Slow and steady I will get there and learn the steps a long the way, and retain it aswell.πŸ˜πŸ’—

Much love Faye xxx

Emo the Emotional Elf #author #emotions #anxiety #autism #mentalhealth

Yesterday’s trip

It started so early Jake set his alarm for 5am we were going to leave for the journey to Birmingham comic com convention.

The kids woke up early I tried to ignore the loud buzzing and flashing red light which came from Jake’s Spiderman alarm plus the loud banging of the doors and cupboards as the kids were getting ready.😁

Sometimes they have no concept of time, the fact our house joins onto our neighbours and they want a weekend sleep in. On a plus note they didn’t have to be repeatedly called which for me happens every school day. Now I know just how annoying it must be to them πŸ˜‚.

We are always over prepared our own packed lunches not only saves the meltdowns over what foods when eating out but saves money too.

The first aid kits stocked with all sorts of plasters bandages, and things incase of emergency. Pain meds , medicines that are now part of Niki’s daily routine.

Water bottles many , changes of clothes, the dress up outfits. Made to the best of our ability, have to be very specific , get it wrong and anxiety will be high.

The oil,water,tyres, checked and a full tank of petrol all done the day before to insure a smooth as possible journey. I am hoping the kids cope in the car for such a long drive and to be honest they were angles and were even helping with reading the road signs and Sat Nav.

I am so glad I paid for priority parking it was so close to the event entrance that when I need Jake to get some air when he was getting over anxious with his costume and the crowds. We just went and sat in the car for a while had a drink and some food let him chill before returning.

Niki had Tom so they independantly

Went round the event and messaged and met us a certain spots to just say I am cool, it was after all her birthday choise.

It was a lovely day out and getting to show Niki and Jake where Thier big brother lived was great aswell all meeting up to go to together.

Here are some pics from the event

Even superman has to get money from cash point.

Fabulous memories made, Jake even one a computer competition, he one a Minecraft sword. 😁

It also made him feel great when others asked for a picture with him he loves Tokyo Ghoul ,infact he has just finished reading the first books.

We ended up leaving here at 6.20am and arriving at my oldest son’s in Birmingham about 9.40 with only short stops on the way.

Journey home was great aswell leaving at about 6pm and arriving at 9.30 we stopped at the first service station everyone was hungry but no Mc D’s so had to drive about 100 miles before we stopped to eat. Couldn’t wait to get home for food. Hungry young people’s .

We were all so tired from the day we crashed as soon as we got home, I said to Jake turn alarm off we can sleep in, it’s Sunday and no school tommorrow.

But this morning 8am that same loud buzzing and bright flashing red light woke me up. Didn’t wake anyone else just me. I can never get back to sleep once I am awake doesn’t matter what time. I guess I should look at it positively as I was awake all my washing and ironing has been completed another tick off the list of things to do, even managed to dry to loads on the line out side instead of using all the electrical in one go. Yay me πŸ˜€

Sunday Home work Grr hegerty maths

Anxiety causing, Jake has been trying bless him, I tried and let me say my mind went mush how these kids cope with these online maths lessons 😰

One phone call to big brother and Jake understood it. Me however am not a fan of online homework apps don’t always work or the way they put the questions makes it more difficult.

It isn’t the first time Jake has had trouble trying to use this app.

He much prefers the old sheet sent home style finds it easy to do for some reason he has spoken to his teacher explaining his difficulty with it and also we have written letters aswell.

I was speaking to another mum at the school the other day who son is also autistic and has alot of anxiety with the online homework app. So it isn’t only Jake. That it causes anxiety for.

Maths used to be something he enjoyed from a young age his favorite subject. But now the cause of a lot of his anxiety.

Back to discuss it with his maths teacher to see if we can find a better solution for Jake’s sake , it is hard for him to face the teacher the next day if he doesn’t understand something he feels very embarrassed by it.

Any way that’s all for today

Speak soon

All my love Faye πŸ’—πŸ˜