Author Archives: dyspraxicdomesticatedmummy

Emotional 

So tomorrow is the day that I’ve spent months planning.
I’m nervous, excited and emotional all in one go.
I am so worried that people won’t come or that it won’t be a success. It means the world to me this.
Loosing Ethan was truly the worst thing I have ever experienced. There was ultimately nothing anyone could have done. There are things though that helped make the situations bearable.
I just hope that I can raise money to help other people. Money makes the world go round ultimately. So everything that helped us make the situation of loosing Ethan that little bit easier if that’s the way to put it costs money. So I want to raise money to give to the hospital to spend on things so that other people get the same treatment.
Last time I did an event like this I raised just short of £2,000 which bought another cold cot.
A cold cot is a refrigerated cot where babies that have passed are kept with their parents. Without them.babies would have to be taken to the morgue fairly quickly. This way with a cold cot the babies can be kept with their parents for longer.
I have a memory box that I got when I lost Ethan. It’s got everything in it. Like most things though it costs money. It’s at least £20. It means the world to me as it has all my memories of Ethan in it. All my memories that I have of my son in one box.
It’s devastating but it’s all I got. I walked in pregnant and walked out with no baby and a box.
So if tomorrow’s event can do anything. I just hope that I can buy even just a few memory boxed for other parents.
It’s awful having everything in a box but it still means a lot even though it pains me.
Tomorrow is going to be emotional. I just can’t believe that people are going out of their way to help me. It’s amazing and I feel so lucky.
October is a funny ole month really for me.
Ethan’s due date was October. Alfie was born in October and it’s also baby loss remembrance week in October. It’s really tough and plays on my emotions a lot
What was and what could have been.
I miss my son Ethan and I love him so so very much. I have a lot of good days but I still have my bad moments occasionally. The other night I sobbed in Ste’s arms and just said I want him back. I hate that my heart aches for him so much. I know he couldn’t have lived but sometimes I forget just how seriously poorly he was and all I can think is that I need and want my son back.
It’s not normal to have to have a funeral for your child and there is no way of getting passed that.
Anyway. I’m.going to go to bed praying that people turn up tomorrow and that it’s as successful before.
Wish me luck. This event means a lot to me.
Sorry this probably hasn’t made much sense!
One emotional angel Mummy xx







That Look

That Look

 

To the woman who gave my friend and I that look this week……

How very rude of you!

Two toddlers in tow and a baby, my friend and I decided to have a long over due catch up at a child friendly place. The Sea Life Centre.

As you can imagine. It wasn’t an easy trip out! Bags everywhere, prams, baby carriers, reins, two worn out slightly stressed Mum’s and you have the audacity to give us that look…..!

Just because your child who was older than ours too may I point out, was doing exactly what they were told and being ‘the perfect child’, there was no need for you to look at us the way you did and look down on us. You might have you s*** together but for all you know, it could have taken a lot for us to get out that day. What if we had been the type to be bothered by your look? What if I was having a really bad day and had terrible anxiety and had been really stressed, nervous, worried etc about taking my toddler out. I would also like to point out that my child is not a naughty child. He isn’t even 2 yet!

I’ve had my days when Alfie was a lot younger where I was scared of taking him out because of other people. I was scared of people’s reactions and what they might say or what they would think of me when he screamed and got upset for food/his bottle. Or when he screamed because the bottle he just had was hurting his tummy because he has reflux and unknowingly a dairy intolerance. I sat and cried many a time in public with my friend by my side with her baby. I dreaded taking him out and having to feed him. I was scared that people might judge me.

Thankfully I am a lot stronger now and feeding with him is fine – unless he is hungry and then you know about it ha ha!

Thank god though that I am not that scared anxiety ridden Mother now though as that one look you gave my friend and I this week could have set me back. Just because my son got upset and annoyed because he couldn’t take the pet snail home / hold him forever.

He’s exploring the world and finding things out. He has a lot to learn and doesn’t always understand why he can’t do certain things. He gets excited and frustrated and tests boundaries. He’s an explorer and he’s amazing. He has his moments yes but what toddler doesn’t? That’s how they learn!

He doesn’t always know how to express himself either, but you know what. That’s ok because he’s learning and that’s my job to help him understand and learn in life.

So next time you think about judging someone else and their child / baby / toddler. Don’t! Instead, if you have your s*** together maybe offer that Mum some support. Tell her it will pass and that she is doing an amazing job. Sometimes we need reminding. Parenting is flipping hard work, so don’t make someone else’s day that bit harder by judging their situation when you clearly don’t have a clue!!!

Thank – You

From a sometimes stressed out, over anxious, always worrying Mummy xx



Brain Fog

Hi All!

Welome back! Sorry it’s been a while but for some reason my brain has been having what I call brain fog. That lovely thing you get with dyspraxia when you have a ton of stuff to do and sort and can’t actually think straight at all. It honestly feels like I am wandering around in thick fog. A little lost with a vague idea of where to go!

I have recently decided to do another charity event for SANDS in memory of my son Ethan. I am extremely nervous yet excited to see what comes of it. I have lots of people baking for me and I have around 13 craft stalls where people come and sell their0 stuff. Some of the crafters have kindly offerred to donate a percentage of their takings on the day to SANDS. Last time I managed to raise nearly £2,000. I don’t expect to get anywhere near as much but hopefully a few hundred pounds would be nice. The idea is that the money goes towards anything the grieving families may need in order to support them. Cold cots to keep your baby with you longer or memory boxes etc. Anything. Whilst I have enjoyed organising this event it also drags up all my emotions that don’t usually arise so I am feeling quite emotional about it all too. It also makes me miss my son Ethan even more. It’s like a painful reminder that he’s not here. I don’t mind though as the pain and tears are a reminder that he existed and he wasn’t just in my imagination. He’s part of my memories.

My event isn’t long off now so I will do a blog after the event and let you know how it went. Keep your fingers crossed!!!

It’s almost Alfie’s 2nd birthday soon so that is on my to do list to sort out but it makes me nervous as his birthday was orginally Ethan’s due date.

So Ethan was due on 17th October 2014. Alfie was born 17th October 2015. It really messed with my head and emotionally I was a mess last year the day before Alfie’s 1st birthday. Hopefully this year wont be as bad but if there is anything I have learnt in this journey it is that the build up is often worse than the actual day. Like Christmas and anniversaries. In fact don’t even go there with Christmas. I mean my god. Christmas is all about children so when one of them is no longer here, all the christmas stuff around you is just absolutely heart wrenching. Its horrendous. It’s a real life nightmare. It’s a painful reminder everywhere you look. I mean it physically hurts. Another thing, recently everyone was posting school photos. Something I will never have with him. Ethan was very much a wanted baby and to say goodbye to him was by far the worst thing I will ever have to do in my life and I can honestly say it will hurt me forever.

Recently I have had a lot of people ask me if I am having another baby. Alfie is nearly two so people seem to think it’s ok to ask me when I am having another. I am not being funny but since when did it become ok to ask me something so personal about how many children I would like etc etc. It’s non of anyone elses buisness to be honest! That aside it actually really upsets me to talk about. Having Alfie and getting pregnant again after Ethan was so difficult and I was in pieces most days. Petrified about the thought of loosing another baby so I am sorry I am not prepared to put myself through that again just because you think I should have another!

Anyway moving on from that rant!!!

We are taking Alfie on holiday this year and we can’t wait! I have to say though, knowing what he is like I am a little concerned about entertaining him on the plane!!! I have put a pack together for him actually so I will let you know how it goes!

It was mine and my husband’s wedding anniversary recently. It was a very quiet celebration but he got me some wonderful flowers which was lovely. We sat and watched our wedding DVD and gosh. It amazes me how things change. Some people have died, some astray, some couples no longer together etc. So many people and so much attention on you both and then 4 years later and celebrating it is just you, him and the baby, a card from each other and the Mum and that’s it. Does anyone else suddenly get taken aback at how life changes? Don’t get me wrong I love my family and wouldn’t change them for anything but when I stop sometmes and look and think. I honestly can’t believe just how different life is in just a few short years or maybe more.

Anyway. Not much point to this one really other than to let you know about my brain fog ha ha! Keep your fingers crossed for me on the charity event and everything else that is helping with he brain fog recently!!!!

Take Care

Much love

Emma

 






Being a Step Mum

Hello!

Welcome back to my blog.

I have to apologise for my absence but this year has been really pants for illnesses in our house! I currently feel like I am always unwell so that’s why it has taken me a while to get around to writing a new blog. Anyway, that isn’t what this blog is about!

I will talk about my dyspraxia again but this time I thought I would have a go at telling you what it’s like for me to be a Step Mum.

I have talked about my other boys so it’s only fair that I tell you about life as a Step Mum.

My Step Son is called William and is currently 12 years old and about a million foot tall ha ha!!!! He grows so flipping fast that boy I just can’t keep up!!!! I’m 5ft 5 (ok I’m almost 5ft 5 but shhhhhhh!!) and he’s practically the same height as me!

When I first got together with my now husband, William was weeks off his 2ndbirthday. I never thought for one minute that I would be a Step Mum to anyone. My life was planned out ahead in my head, I was almost 22 years old and I wasn’t ready for children just yet I was studying to get ahead in my career. Now before you judge me I love William like he’s my own son. He is amazing and we have an amazing friendship. I fell head over heels for Ste (the Hubby!) and our relationship progressed quickly. We had known each other for a long time so I knew he had a son. Taking someone else’s child on is a big thing though. It’s so different to having your own.

I first met William on his 2nd birthday. Ste and I took him to the zoo for the day, we had a great time and William was so cute and sweet it’s hard not to love him to be honest!!! He might almost be a teenager now but he is still one of the most considerate, kind and caring children I have met.

It was hard though, Ste and I didn’t really have any time together just the two of us. We both worked and my evenings in the week were spent studying. So when it came to weekends,it was always family time. Don’t get me wrong it was lovely, but Ste and I skipped the honeymoon stage of our relationship in a way. We were up early every weekend, going to the park etc all the time. It was lovely but as I said, it was hard as alone time was few and far between.

A few years after Ste and I had first got together, William’s visits went to every other weekend.

We missed him so much. We loved our weekends together and it was our routine. We still have him every other weekend now. Alfie loves it when he is over for the weekend.

The trouble is when they don’t live with you, to me, you feel like you can never ‘win’. Let me explain. Yes ‘proper’ couple time just me and Ste would have been great, going out, getting to know each other, weekends away and general adult stuff. Trouble is we would miss William. Even now sometimes I’m gutted we don’t see him as much as there is always something I would love to take him too but it’s never our weekend so we can’t take him.

Everything we have done has always centred around when we have had William and when we can do things. Ste used to work every other weekend for a while too and him working always fell on his weekend when William wasn’t with us so even then we didn’t get time together for just us. I know that’s kind of how it goes when you have children but when someone else is telling you when you can I can’t see them through the year it’s very hard. Ste and I just didn’t have a say in anything. From when we could have him at Christmas, birthday or anything. We got what we were given basically. Which is fine, I mean I have no say anyway but it’s Ste I always feel bad for. Over the years we (he) has missed out on so much. From taking and picking him up from school (picking him up was rare for us), getting stuff he had made a school, parents evening, teaching him stuff. There’s just so much that I feel like we have probably missed out on being part time parents. Ste is an amazing Dad and loves all his children so much and it makes me sad that he may have missed out on things like Father Day gifts from School, teaching him stuff or even taking him somewhere one day to a really cool event just because it wasn’t our weekend.

(Man this blog is hard to write!!! Please bear in mind that no matter what I love my Step Son and I wouldn’t ever change anything. He’s great and I love how much he loves Alfie too.)

Aside from the missing out on things I had my own difficulties. As William wasn’t mine, I found it hard to ever have much of a say or tell him off or whatever. As much as I consider him one of mine he isn’t my son by blood an ultimately I don’t have a say in anything. After more than 10 years of being his Step Mum if Ste and I split tomorrow I wouldn’t have any right to see him and to be honest that would break my heart.

It’s also hard to tell off someone else’s child. I always question (even now) if Ste might agree with me or not or if I have done the right thing. Just because I have known William almost all his life it still makes me feel uncomfortable if I have to tell him off for something.

The other thing that bothered me for a long time is that I would never be able to give my husband and his parents the thrill and excitement of the first child / grandchild. Someone else had. I was second and worried for a long time that there wouldn’t be as much excitement the second time. I also worried that I would feel hugely inferior to my husband’s knowledge of already having a child. I never quite got over that feeling, I just learnt to ignore it to be honest.

After we lost Ethan though I felt like such a failure. I was so sure it was all my fault that his heart was broke. After all my husband already had one healthy child so it must be my fault. It took a while to get my head around the fact that this was a fluke what happened to Ethan.

So, as William isn’t my flesh and blood son that obviously makes him and Alfie half-brothers. Their bond is so lovely, despite the age gap they get on great and after William experiencing our first loss I think he appreciates even more just how special Alfie is. The adore each other! William is already excited about Christmas and told me recently that he is staying with us on Christmas Eve so he can watch Alfie open his presents! He’s just too cute! He helped Alfie write his letter to Santa the last 2 years and I imagine he will until Alfie can write to be honest. I love that they have this love for each other as it did worry me that because they won’t live together all the time that they might not get on and also because of the age gap but you know what it doesn’t bother them. They treat each other like brothers although Alfie is still a bit young to understand relationships. I think it helps that William is such a lovely boy.

We have lots of fun together as a family and we still try when possible to make separate time for William so he gets that he is still just as important to us as he ever was. Although sometimes I get sad that we haven’t thrown his birthday party, or helped him with homework, or got to know his friends whilst he’s growing up, not seeing him on his birthday or only seeing him for a short time over Christmas…….

We do still have a special things that we try and do together. I have tried so hard to make an effort with annual yearly things like Halloween parties and bonfire nights etc. I work hard to create special times and moments for him at our house and as far as I am concerned I have 3 sons and he is one of them. I love and treat him like he is my own. I have shared things with him, books, events, our own secrets from his Dad (sorry Ste ha ha ha!!!). William and I love doing stuff together and I feel so lucky to have such a loving young man as my Step Son. As he is getting older things are changing and there is lots more fun stuff we can do together and it’s great. I have learnt not to dwell on what we might have missed out on and concentrate on what we have experienced as a family and what we can do.

So yeah, being a Step Mum is hard work emotionally, mentally, everything. Really hard. You know what though? When your Step Son is excited to do something with you that youalways do together, or he tells you you’re a good parent. It makes everything worth it.

Fingers crossed I continue to do a good job eh…….

Emma






















Living with Dyspraxia

Believe it or not this is actually the hardest blog I have written so far. It is very difficult to explain dyspraxia to someone who doesn’t have it.
It is a form of developmental co-ordination and affects fine and/or gross motor co-ordination. It can affect all sorts including speech. There is no exact cause of Dyspraxia but it is thought to be caused by a disruption in the way messages from the brain are transmitted to the body.
It is very difficult to get diagnosed with dyspraxia, I don’t actually think there is any real conclusive test. I actually found out whilst getting tested for Dyslexia.
Dyspraxia kind of lurks all the time! It gets worse or flares up if you like in certain situations, for example mine is a lot worse when I am stressed, then I get stressed and frustrated with it and then it gets worse. The circle is never ending and can takes days to break the circle/cycle of the flare up. It actually gets me really stressed and upset, it makes me feel stupid in all honesty.
So if I actually list the areas where it can affect you then I will try and explain some a bit better.
Self-care
Writing – gripping the pen, staying along a line, pressing too hard when writing
Typing
Driving
Riding a bike
Learning new skills
Cooking
Education
Work
D.I.Y
Time management problems
Planning things
Personal organisation
Memory
Perception and processing
Listening – large groups can be hard, can be tactless and interrupt frequently. Picking up on tone of pitch – yourself or others. May listen but not understand.
Articulation
Speech – may talk continuously and repeat themselves. Some people have difficulty organising the sequence of their words too.
Household chores
Poor balance
Posture
Fatigue
Standing for a long time due to weak / low muscle tone
Some dyspraxics may have flat feet
Floppy and unstable around the joints
Hand-eye co-ordination
Lack of rhythm
Clumsy and gait movement
Difficulty changing direction
Stopping and starting actions
Exaggerated movement
Lack of manual dexterity
Poor at two handed tasks causing problems with cutlery, cleaning, cooking, ironing, craft work and playing musical instruments
Inadequate grasp – so using tools, domestic implements, locks and keys etc
Dressing – fastening clothes and tying shoe laces.
Poor establishment in hand dominance – may use either hand for different tasks at different times
Eye movement – tracking a moving object smoothly, also tend to loose the place while reading. Also poor relocating, so moving quickly from one object to another.
Over sensitive to light
Poor visual perception
Over sensitive to noise – distinguishing sounds
Over and under sensitive to touch – can result in dislike of being touched or not liking tight clothing. Also over/under sensitive to smell, taste, temperature and pain.
Lack of spatial awareness
No sense of time, distance, speed, weight etc
No sense of direction – forget map reading
Accuracy problems – difficulty copying sounds, writing, movement and proofreading
Difficulty in following instructions – especially more than one at a time
Difficulty concentrating – may be easily distracted
Daydream and wander about aimlessly
Slow to finish a task
May only do one thing at once properly though may try to do many things at once
Slow in adapting to new situations – may avoid altogether
Easily frustrated, wanting instant gratification
Opt out of things that are too difficult
Erratic – having good days and bad
May have difficulty sleeping
Get stressed, depressed or anxious easily
Prone to low self esteem, emotional outbursts, phobias, fears, obsessions, compulsions and addictive behaviour.
Now that is an extremely long list! Don’t get me wrong though, people who have dyspraxia won’t have all of these symptoms. Even the worst case won’t have all of these. The things in the list aren’t even unique to dyspraxia. The thing with people with dyspraxia they will have more than their fair share!
Day to day I manage pretty well, I have the usual things of walking into doorways, tables and chairs etc. Spilling things and not being able to spell. One of the worst traits for me is my memory. It’s shocking. I seriously can’t tell you how bad it is! Thankfully people like my Mum and my Supervisor and work colleagues are great and they know what works best for me. I get step by step instructions, usually written down and in bullet format. I know most of us struggle with remembering things but trust me this is worse! My friends, family and husband will tell you how frustrating it is for them. I have been known to completely forget that I have read a book or watched a film, it’s like I am watching or reading for the first time! It usually kicks in at some point that I have watched or read it before but I tend to argue the toss for a while ha ha! It is really frustrating though and I end up feeling incredibly stupid and self conscious because at 32 years old I can’t remember promising something to someone or that I visited somewhere or read something before. That’s not to say I can’t remember anything, I mean I am not like the character out of 50 first dates ha ha!!! I have ways and means of making sure I remember things, alarms on my phone, calendars on my phone in my kitchen and a diary. In some ways my brain in quite logical and works in a specific order to do or remember something. For example going food shopping! I could never just write down a bunch of food items and randomly go shopping, I have to follow a pattern on my sheet that matches around the shop, that way nothing gets forgotten about.
I have so many bruises and cuts on me over the years it’s untrue! I have had that many accidents and broken that many kitchen items my husband has banned any expensive kitchen items in our house. Our wine glasses are cheap ones as I break them, he bought 52 pint glasses off eBay around 4 years ago and we have 4 left. All my fault. I’ve broken countless dishes and plates. I have also burnt myself several times and more recently probably scarred myself I was that daft! I mis-judged the distance of my arm to the pan and well I burnt my arm. I spill things all the time too. I have ruined my food numerous times with blackcurrant juice usually because of my clumsiness. I never leave drinks somewhere where I think I could knock it over or break or spill it. My drink at meal times sits further away from my food. I sometimes move other peoples drinks if I think I may knock it over too. All down to lack of spatial awareness. I can’t judge distances. I also can’t judge speed or the weight of things. Not a clue.
Ok so going back to the list. I will go through and explain as briefly as possible.
Self care, I do ok with this. I have had practise with my hair and make up so I do ok other than attempting a new hair style that can be tricky and will probably end up being getting annoyed, throwing my hairbrush across the room and giving up. I can’t get the co-ordination or the grip to be able to do fancy styles etc.
Writing. Forget it in all aspects! It’s tiring on my muscles in my hand and wrist joints, I can’t grip the pen, I can’t always follow the line. If there is no line I probably won’t write in a straight line. My writing is just everywhere and majority of the time it’s illegible. It usually takes concentration to write so people can read my writing and generally it hurts my arm and my writing can look quite different and very scruffy in just one sentence. Typing I prefer but spelling and grammar is not something I am good at which I know annoys my Mum and one friend in particular! I do read things back but I might not see the mistake until I have read it 4/5 times even more. So I apologise in advance for all my blogs where I haven’t spelt anything properly ha ha.
Driving. It took me a while to pass. I was determined to do it for the freedom of going where I want. The trouble with driving is there is so much to do and concentrate on I actually find it very exhausting. Driving to work is my limit and that takes me 1 hour. I can’t drive longer than that it’s too much for me. I also can’t drive anywhere I don’t know, even with a sat nav. I find it so stressful that I just panic. There is far too much going on for my brain to process all the information as quickly as it needs too. My brain works differently and process information a lot differently and sometimes a lot slower. riving is a hard task to master for people like me to be honest. From what I have come across anyway.
Cooking. It’s dangerous! I can do it but if I am following a recipe I have to read it through several times first. I have been known to forget a step on some ingredients several times before now ha ha! It’s dangerous because of the lack of spatial awareness around me and I end up burning myself or slicing my finger with a knife. That said I am actually a really good baker! Ask anyone that has tasted one of my cakes!!!
Education. There is a lot I could say about this but I am limited for reasons which I cannot discuss. I have a Distinction in Applied Science and a 2nd Class Hons in Clinical Physiology. It took me many years attending university part time to get these. It was during my time at university that I discovered I had dyslexia and dyspraxia. On finding out it was the biggest relief ever I can tell you because it meant I wasn’t stupid and that there was hope for me to gain my degree. After finding out I saught help from others who understood what I was going through and I adapted and changed my way of studying to help me remember and work through my degree. Loosing my son aside, this was actually one of the hardest and most challenging things I have ever done. Unless you suffer with dyslexia and dyspraxia there is just no way you could understand how hard I worked for this. I literally doubled the effort and time I put in to this degree and I proud to say I completed this degree on my own. Again my children aside this is one of my proudest achievements in my life.
Time management and planning. I set out plans etc for pretty much everything, what we will eat the following week, what we are doing on a weekend or days off, what I will wear for something. I love planning events and things to do. One of my downfalls with things like this is never actually getting around to doing things. I know it sounds like laziness or whatever but it’s not that. It’s hard to explain. I have seen a few people who suffer with dyspraxia talk about this. It’s not laziness like I said, maybe it’s a time management thing I’m not sure? I know sometimes I have to work backwards to work out what time I may need to start getting ready to be somewhere and I try really hard to be on time for things. I’m not really making myself very clear here to be honest and I’m not sure how else to explain. All I know is I am not on my own and other dyspraxics will get this!! Hopefully ha ha!
Listening. Interesting one. If someone like me is in a larger group or in an area where there are many conversations going on at once, it is very difficult to focus on the conversation you are meant to be concentrating on. I have also been told by my husband that I can be a little tactless and interrupt people. My tone of pitch can also be way off and sometimes I might be listening to someone but not actually understanding what is going on. I might ask people to repeat themselves if I am with people I know. Otherwise I don’t bother as I just feel like I look stupid. I get really worried as you can tell for people mistaking me for being stupid and clumsy, I try not to let it bother me most of the time as day to day I do really well and I have adapted things in my own way to manage things better so you wouldn’t really be able to tell. Some days though, the bad days, are hard and those are the days were I struggle to ‘hide it’ so that people don’t misjudge me for being stupid. If I was stupid I wouldn’t be able to achieve and do the things that I do do or have done in my life though?! (Not sure if this makes sense?!)
Articulation. Something I probably don’t have much of to be honest!
Speech. Oh gosh I am always repeating myself, my husband goes mad because I repeat myself several times in the same paragraph. I probably do it in my blogs too to be honest but I try not too. I have previously mentioned the whole tone of pitch above (see what I did I didn’t quite repeat myself ha ha!!!). I don’t know why I do it, I think sometimes it’s to re-iterate to myself what I have said, commit it to memory maybe? If I am telling someone a story I can often get jumbled in what I am saying and flit back and forth in what I am saying and may be even miss bits out. If I am on a ‘bad day’ here my dyspraxia is at it’s worst I can develop a pause, stutter or whatever you call it. It’s annoyingly frustrating, embarrassing and I hate it. The worst thing people can do though is say ‘spit your words out’, it just makes it worse and quote often I will give up as the other person saying this has clearly got frustrated waiting for my extremely busy and overworked brain to function properly and say the words I want to say. This goes back to the beginning of the blog where I explained what it is. With dspraxia the brain worked differently and ultimately is in overdrive all the time working ten times harder to do a simple task like gripping a pain, talking or listening or driving
This leads me into fatigue. With all this sensory processing over load it’s no flipping wonder!!!!
Balance. Nope. Can’t balance myself or a few drinks on a tray etc. One drink at once and no tight ropes ha ha ha!!!
Flat feet and low muscle tone in legs – therefore unable to stand for long periods of time. Yes I have both of these. I have orthotics to correct my feet and often feel like I look lazy because my legs are sore and aching and I need to sit down. I’m not actually sure why this is, I just know I have it and I wish I didn’t.
Hand eye co-ordination. Something I don’t have ha ha! I have never been able to catch a ball and I think this is once of the many reasons I probably didn’t get picked first in sports at school. In fact try last!!!! I frequently walk into doors and tables and drop things because of lack of co-ordination. I’m often described as being clumsy. I think this should have been my middle name to be honest!!!
Two handed tasks. Generally I can manage with maybe some practise for some things but craft things and musical instruments you can forget it!!!
Inadequate grip. I really struggle to grip things properly most days to be honest. I have trouble with pens and often have several different shaped pens when at work to help me, I can struggle with tools – hammer and nail -, laces and buttons oh my god I hate buttons! I just can’t do them! I would never intentionally buy anything with buttons on as I just can’t do them! They really frustrate me!
Eye movement. So when I am reading I will often loose my place when I am reading. I end up reading that section of the book several times! It can be a little annoying and I end up having to out the book down and walk away from it. I do however find it a little easier now I have a kindle that my husband bought for me as I can increase the font size so there are less words on the page.
Over sensitive to noise. This one is frustrating. It actually upsets me although I try very hard not to show it. If I am in a room with lots of conversations, music and maybe other noises such as toys and mobile phones etc. It rally affects me. I am not sure I have ever really told anyone to be honest. It all gets too much and my brain is trying to listen to everything all at once and distinguish each one which it can’t do. I end up feeling like I need to leave the room to get away from all the noise. It’s a huge over stimulation for me and I can’t deal with too many noises at once.
Over sensitive to touch. I am a person that likes to hug and make hand gestures and basically use physical contact if appropriate when speaking. If I am having a day where I am having a ‘flare-up’, I actually can’t stand to be touched. This may surprise people who know me but it’s true. It’s like if someone touches me it will send me over the edge. Like my brain and body can’t cope with any more information to receive. I have often had to ask my husband to stop trying to hug me because I don’t want a hug. I think he gets a bit offended or upset sometimes though. It’s not often I turn down a hug from anyone but sometimes it’s too much. I also can’t be doing with clothes being too tight. Especially around my neck.
Accuracy problems. I have a lot of trouble copying things. It’s so annoying. I have to double and triple check what I am copying before actually copying it. It doesn’t matter if it’s something I am reading or listening too.
I can follow instructions ok, as long as I only get 1/2 at a time. If you give me a big list of stuff to do there is no way I am going to remember. Tell me one thing at once!!!!!
Concentrating. I can concentrate on things, I mean I drive a lot! It’s just sometimes I have to work a lot harder to concentrate on that one thing that’s all.
Slow at adapting to new situations. This is purely because (well for me anyway) I function better by routine. The familiarity of things enable me to manage everyday things better. If someone was to move where I keep my car keys and start putting them somewhere else, it would take me a while before I learnt where they were. So I am not a fan of change! It can stress me out and even result in accidents depending on what the change is. If I knew there was a situation that I would find too difficult to cope with I would avoid as much as I could. I just couldn’t go through with it as I know how much stress could be involved.
I have really struggled with this blog as it is so hard to explain. It’s ended up quite a long one so if you are still reading then thank you.
I manage extremely well I think for someone with dyspraxia. I have found ways of coping with things and some techniques I have mastered without realising until a specialist pointed it out to me. Like making a cup of tea, a simple task yet I manage usually without burning myself. Purely because I have adapted a way to do it so that I won’t spill anything or burn myself.
It’s not a measure of intelligence either. Just because a simple task may involve more effort for me to manage or that I have memory trouble or struggle with noise etc it does not mean I am not intelligent. I work in a hospital environment doing diagnostic tests on people and I have done for 14 years. I also managed to get a degree and a BTEC as well as standard A-Levels and GCSE’s so I’m not thick or stupid. My problem is that my brain works differently and is often working at an extra 10 million miles an hour than your average person.
It is frustrating for people around me, I can sometimes see it in their face or hear it in their voices. She’s broken something again or forgotten something again etc. Do you know what though? It’s ten times more frustrating for me. It’s also embarrassing and upsetting for me too. The best thing though is patience, on both parts. I need to be patient with myself and others with me. It might take me longer to do something or say something etc but be patient and I will get there.
I realise some people may have questions about this and want to know more. If you have any questions please feel free to ask me. Just comment on my blog below and I will reply as soon as I can.
If anyone thinks they may have dyspraxia or know someone with it I will link some pages in my blog too.
Thank you so much for taking the time to read this.
Emma
Dyspraxic Domesticated Mummy
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Memories 

Memories are lovely but some are really hard. It was Ethan’s anniversary recently, three years since he was born. Sounds like a long time doesn’t it? To me it isn’t. It still hurts just as much as it did that day if I’m honest and I think it always will, as time goes on you basically just learn to cope with it better and put a sheild up to protect yourself. The trouble is that shield disappears sometimes. Like anniversaries. I dread them every time. It’s the run up to the day too, not just the actual day. You start re-living every moment that happened before hand. The last memory of them kicking, the last happy memory you had, the last time you were blissfully unaware. Inside while you are secretly in pain and dealing with all this, remembering every tiny detail possible, everyone around you is just carrying on with their lives. Which is fine, I mean it didn’t happen to them. The trouble is as time goes on it feels like everyone else around you has forgtten that tiny baby you once held in your arms, that once lived and died in your arms. That baby that was once a part of you.
I try and just carry on as normally as possible but certain days are really tough like the scan date, the day we confirmed our decision, the day we went in and the day we had him. There are so many things around you that set you off where you end up in floods of tears, triggers everywhere. I had a patient at work recently that set me off, I ended up crying and had to explain bless her! Songs on the radio, things on the TV. Its already such an emotional time that it’s hard to watch and hear things around you sometimes.
For me the hardest thing about his anniversary is that worry that people will forget and just expect me to be ok now because it was a few years ago and I have another baby. The other thing that I find hard is worrying that I will forget any details about the day and what happened and things I said or did. How he looked, the touch of his skin and how he smelt. Everything, its all just a memory. His anniversary also reminds me of lots of things I wish I had done, soe of which are private but some include, pictures of his feet. I never saw his feet, I can’t remember them I didn’t ress him I asked the nurse too because I think I was too scared, I also remember not wanting a photograph with him and no I have none. This really upsets me, I’d give anything to have a photo with him, a picture of his feet and do all those things with him that I will never get to do. Read him a story and feel his arms around my neck. Anniversaries are also a reminder of everything that will never be, everything that has been ripped awsy from you with your baby. First steps, first laugh, first smile, first day at school. First everything.
There are no rules on how to handle anniversaries, my husband and I have found our own way just like many other angel Mums and Dads. For the past three years we have got a gift in his memory (first year his ashes into a bear, second year a keyring and this year a scrapbook with our memories of him in it), we buy a cake, go out for lumch and usually we get two balloons and keep one at home and release another at the cemetry. It might sound a bit strange how we do things but you know what? Who cares! Its awful loosing a baby and watching them die, a part of you is always broken so I think however you manage to get through that day is probably fine!!!!
I could go on forever about my little angel baby but I think for now I will leave this one here. I probably haven’t made any sense in this blog but I hope you have enjoyed reading it.
Thanks for tuning in 🙂
Emma xxx

My Rainbow Baby

My rainbow baby……..where do I even start?!
I gave myself a goal of when I would allow myself to try again after loosing Ethan. It was a huge step to take and one that I wanted to make sure I was as ready for. So after New Year we decided that in the new year we would try again. It was far from an easy journey though!
I was planning and hosting a charity even at the same time to distract myself from everything else around me.
Now pause for a second, after Ethan’s funeral and him being cremated no-one got in touch with us to tell us we had some ashes from the funeral so naturally we assumed we didn’t have any. I had a massive meltdown at work one day after reading something online and phoned my husband in a state panicking. I was so upset at the thought that we may have just left our son and what if his ashes were somewhere and I had just left him? I was in bits. I got home that night to some great news, my husband had done some investigating and Ethan’s ashes were being held somewhere waiting for us to collect.
They very next day we were allowed to collect them. I remember the date, it was the 19th February. As I got ready that morning I felt different, s not thinking anything of it I took a test. I couldn’t believe it, the test was positive! I was thrilled! Then panic set in…..
I had such a mixture of emotions. I was about to go and collect Ethan’s ashes and yet I had just found out I was pregnant again. My head was everywhere!!
I don’t think I believed it for a long time that I was actually pregnant. I was too scared to believe it in case I hoped I might get a baby to keep this time, I was so scared of allowing myself to love my little baby growing inside of me. We told a few family and friends, they too were worried about us and our baby. The consultant had already told us that we had done nothing wrong with Ethan and it was just really bad luck, he also told us though that what happened to Ethan was less than a 1% chance of happening and that any other pregnancies we now had a 5% chance it would happen again.
I can guess what you might be thinking, that’s OK though that’s 95% chance that baby will be OK……Wrong! in my head all I could think was that it had happened once and the chances were so small, so why would it not happen again? Our chances had just increased! I was petrified!
Our family and friends were so supportive of us over the next few months, we had a lot to contend with.
I started bleeding at 5/6 weeks and I remember ringing the the early pregnancy unit for advice and she said something about oh I’m sure it will be OK, it’s probably just settling in or something I can’t remember exactly. Anyway I started to cry down the phone to her and said she didn’t understand and that I couldn’t loose another baby…
So off I went to EPU with husband in tow for a check up and a scan booked for the following week. She told me to not lift anything heavy etc and rest when possible. So that’s what I did. A week later we ad the scan and I was around 6 weeks and baby was progressing OK so far and there was a heartbeat! I was thrilled but my journey had far from begun.
The next hurdle was the 12 week scan, I had the scan on 21st April. There was still a heartbeat and everything looked OK so far. Excellent! I still couldn’t get too excited though, I still had the biggest hurdle to overcome. The heart scan….Meanwhile at some point in April 2015 I had a meltdown at home, I was so terrified of loosing my baby that one day when I was at home alone with my Step Son I went upstairs and cried on my bed. My Mum rang me about something and I cancelled the call, I just couldn’t speak I was crying that much. She was round at my house in a flash though, checked on William and cane up to me and found me in a heap on the floor in absolute floods of tears and crying to her saying I can’t do it, I can’t loose another baby. That’s all I said. At that point I knew I had to take some time out from work and go back on see my counsellor that I saw after I lost Ethan. She was amazing and really helped me think straight and helped me cope with my emotions that I had going on. I should mention at this point that Ethan was due on 17th October 2014 and Alfie was due on 26th October 2015, so needless to say the fact that my pregnancies were running along side each other time wise only a year apart was bloody hard!!!!
They booked the heart scan for baby on 2nd June, I was in absolute bits but it had to be done that week, it was the soonest that they could do it when the heart was fully formed etc. The problem was it was the day before I ad had my heart scan not 1 year earlier…..same hospital, same waiting room….
Oh my god, I was overcome with such emotion, I was in bits and sobbing just sat there, what if it happened again? Why should this baby be OK? Would I be allowed to keep this baby? What if I have another boy? Ethan was my boy, I didn’t think I could cope having a boy and I didn’t want a boy….I know that probably sounds awful but all I could think was if baby was a girl I could cope better and everything would be completely different and it would be OK. I’m not ashamed at how I felt, grief does the strangest thing to your mind. Anyway, my husband and I sat there in the waiting room, silent and both thinking a million different thoughts and situations….
My husband refused to sit where we st just one year earlier so we sat on the opposite side (there were just two rows of chairs facing each other). I could guess what he was thinking, if we don’t sit on that side may be it won’t happen again. Meanwhile I was hoping for a different room as I couldn’t face going in that room again where they scanned me last time.
Anyway it was our turn, my name was called and in we went, I was shaking. I sobbed before I even got on the couch, I begged someone in my head praying to myself that it didn’t happen again, I just couldn’t face it. I refused to loose another baby and I wouldn’t. Anyway I forget how many people were there but the lady that did the scan was so lovely and sympathetic. She knew our history and promised to get it done as quick as possible and that she would be quiet for a while and would tell us what she could as soon as possible. I have no idea how long we waited for news while she scanned me but I can assure you it felt like an eternity, my hand grasping at my husbands hand, my heart was pounding in my chest and silent tears rolling down my cheeks and silently praying for good news. Then finally she spoke……….’there is no evidence of any hypoplastic left heart syndrome and everything else is functioning normally, baby has a strong heart’. Well that was it, I sobbed! My prayers had been answered! My baby was OK!!!!! The relief was intense I can tell you. I was 19 weeks at this point and still had the 20 week scan to overcome but I still couldn’t believe it! We were so happy to tell everyone the good news. I was still seeing my counsellor and had a few more sessions to go to get me through the next few weeks.
They originally wanted me to have my heart scan on the 8th June but after crying in the reception to the midwife and saying no I just can’t, I can’t, my husband calmed me down and calmly explained to the midwife why I couldn’t come on that day. So the heart scan was done and now the 20 week scan to come……
The day arrived, 11th June. We had had Ethan’s first anniversary and celebrated nicely with a walk, lunch out and getting his ashed put in a teddy at build a bear so we could cuddle him forever more. (FYI best thing I have done this and the boys love having a cuddle with their brother although Alfie doesn’t understand yet).
So there we sat in the waiting room waiting to go in for the scan. I ended up having to go in the same room as I had the with Ethan which sent my anxiety up but never mind I just wanted to get it done! So we sat there and the lady scanned me, then came the words. Everything is fine. I couldn’t quite believe what she told me! My baby was OK!!! We asked her if she could also tell us what sex the baby was…..a boy…….
Such a mixture of emotions, I was so scared to hold a baby again and to have a boy. How would I feel holding another son after holding Ethan?
I slowly started to come round to the idea and it was about 26 weeks or more before I finally accepted that I might actually come home with a baby! At that point I allowed myself to buy things and start painting the nursery. It was all so hard as I should have been doing this for Ethan. How could I paint a room for my second son when it should have been my first son’s bedroom?! It was so hard but we did it.
The next hardest thing was all the questions from people……….is this your first? That was the worst one. I just didn’t know what to say or how to answer, sometimes I lied and said yes and sometimes I said it was my second. Sometimes I tell people that I had a son before Alfie and sometimes I don’t, it depends. It’s a tough question and I dread it every time.
The following months got easier and I slowly got more and more excited as the weeks and months went by. Although it was still hard and I had a few more scans along the way due to my bump measuring small, it was scary and worrying but I got through it.
Eventually I finished for maternity leave, still in fear of not coming home with a baby, worried about how I feel being in labour again after my first experience ending in such tragedy. I kept myself very busy and didn’t do the whole rest part at all!!! Instead I was scrubbing bathrooms, transferring clothes into new furniture, baking, cooking etc you name it. I had to sort through all Alfie’s clothes too some of which I had originally bought for Ethan along with a few bath toys. It was just so hard.
Friday 16th October came, it was baby loss remembrance / awareness week, I had been busy sorting our bedroom out as we had just decorated, I went with hubby to do the big shop, made tea, out the shopping away, went to the tip……I was sat watching the bake off (the one where Paul and Mary show how it should have been baked!!) and started to feel really uncomfortable. I could not sit anywhere and get comfortable so I took myself for a bath. It was around 10pm that evening. I sat there for a while and thought ‘could it be?’ ‘no, no way I had another week to go….’
I started timing the pains that kept on coming, eventually my husband came to check on me and asked how I was? After noticing that I had been timing my pains and saw me have another pain, he asked how often my app had told me to go to hospital, I replied 4 times!!!!! At the point I was still in denial, I couldn’t go into labour, not today….I even told my husband, I kept saying no, not today, I can’t, Can we just wait another day?! Reluctantly I got out of the bath and slowly started to get dressed, my husband meanwhile rushing around making sure we had everything. We arrived at the hospital shortly after midnight, still in disbelief that I was in labour. The midwife checked over me and that was t, I was 5 cm dilated already and in labour. I cried, our rainbow baby was going to be born on my angel baby’s due date……
My husband rang both our parents who then spent all night by the phone anxiously waiting for good news. Apart from being petrified that something might still go wrong I had a pretty good labour, after an hour of pushing Alfie eventually arrived at 9:01am on Saturday 17th October. As I held him in my arms for the first time and listened to the sound of his cries/his breathing, I kissed him and whispered ‘you’re here, I can’t believe it you are here. We did it. I love you so much’, I had tears rolling down my cheeks. I was holding my son and he was alive, the emotions that ran through me were unreal. I never wanted to let him go, he was mine and I could keep him! I think I even asked the nurse was she sure I could take him home?! Daft I know but I couldn’t believe it, he was mine and he was mine to keep this time and he was absolutely perfect. Alfie Roy, his second name was given to him after my late Grandad who had sadly passed away only a few months before Alfie was born and sadly didn’t make it to October to see my bring home a healthy baby. Although I am sure he is watching over us and looking after my angel baby for me.
We arrived home a few hours later and both parents came to see him, needless to say we were all over joyed that our rainbow baby made it safely.
The next few weeks were the hard but nothing unusual. Although at 5 days old Alfie had to go into hospital for tests as he had lost so much weight and they were worried he was de-hydrated. They say that all parents are worried and anxious etc but I can’t help but think ours are heightened. I mean why wouldn’t they be after all we had gone through?
It’s been a tough ride with Alfie from start to finish in more ways than one, the pregnancy was emotionally and physically just un-bearable, I had so much anxiety and also suffered with SPD so I was on crutches for half my pregnancy. I would love to say I enjoyed being pregnant but I didn’t really. I loved my bump yes, being a Mummy was all I had ever wanted but I will never again have that innocence that being pregnant is all happy and wonderful and exciting. After having Alfie I suffered with a lot of anxiety for lots of reasons, I was petrified of loosing him and thinking it couldn’t be right, what if something happens to him and this baby is taken from me. I also suffered with more grief from loosing Ethan as now I had a baby in my arms I knew exactly what I was missing with Ethan and that hurt even more. Alfie when he was born looked like Ethan too and caught my breath a few times when I looked at him. I still look at Alfie sometimes now and wonder if Ethan would have looked the same and what his personality would have been like. Alfie wasn’t the easiest baby to look after either!!!! He suffered from really bad reflux and we have found out after his 1st birthday that he has an intolerance to milk, soya and eggs. He used to scream so much and feeding him was a nightmare, I was so grateful to have a baby to look after that I could call my own but it was hard to enjoy much when he screamed so much all day and all night!!!!
Alfie’s first birthday was celebrated with a big party, it was important to me to celebrate his life but the day before I was a mess as if things had gone OK with Ethan this could have been his birthday. I still have my moments and find it hard. Sometimes I hold Alfie so tight as I just feel so lucky to even get the chance to have one baby to keep. He is my absolute world and I literally cannot describe the amount of love I have for him and how much he means to me and my family. He is so special to me and my husband I just can’t explain. Ethan will always remain in our hearts and Alfie will always be the one that gave my that first true smile.
Alfie is not here instead of Ethan, he is here because of him. I had a few signs leading up to my labour starting with Alfie and I honestly believe that Ethan watches over us and that he sends us signs to say he is with us. I’d like to think they would have been great playing together.
I am sure I will have more things to overcome in life as time goes on, explaining to Alfie about his other brother who lives in the sky and more questions from other people about when am I going to have another and how many children did I have etc…..
For now though, I have been through enough and the fact that I even have Alfie is amazing. He is my world and makes me laugh every single day, his laugh and his hugs are priceless.
I love you Alfie, more than you will ever know. You are worth everything to me and I will strive to be the best Mummy I can to you and protect you as much as I can.
Love you always and forever, my darling precious rainbow baby.
Mummy
aka Emma aka #dyspraxicdomesticatedMummy

My son died…..

Welcome to my second blog!For my second blog I wanted to introduce my first born son.
As I have said before I am a Mummy to three boys. My first born son was called Ethan. Yes you read that correct. Was.
My son died. Those three words often make other people feel really uncomfortable.
Guess what? There is a lot more that makes me feel uncomfortable!!!
I got pregnant with Ethan 5 months after I got married. We found out on the 8th February 2014 and we couldn’t have been happier.
I always wanted to be a Mummy and have a family, I had a wonderful step son and wanted to have a baby of my own and expand our family. We were so excited and couldn’t wait to share our news with everyone!
Naturally in my head I suddenly planned my entire future with our baby, after all what could possibly go wrong…….I was pregnant of course I was going to come home with my baby….
Looking back now I feel so naive, I didn’t have a clue that things could go wrong.
Anyway, I had a perfectly normal pregnancy. I went for my 12 week scan and there he was! My tiny sweet precious baby! He had a heartbeat and was swooshing around nicely in my belly! It was Mother’s Day and my birthday within a day of each other when we told our parents and close friends, I mean what better time? It was a memorable day to tell them and seemed like a perfect Mother’s Day present…..
We told everyone else after my 12 week scan.
I was absolutely over the moon telling everyone that we were expecting a baby! I was so thrilled, it was finally me! I was expecting my first baby! I had waited so long to be this woman that was creating life, I planned everything in my head getting carried away with myself. I had always wanted to be a Mummy and now I was.
So our planning began, we started thinking of names, buying clothes, planning the nursery, everything…….
I was around 19 weeks on my husbands birthday and suddenly I felt him move! My husband was thrilled as he felt him too and it was the perfect birthday present! I looked and felt fabulous, my bump was growing nicely and I had felt Ethan kick me for the first time. Life was great.
Just less than a week after my husbands birthday was the 20 week scan. Tuesday 3rd June at 8:30am. I woke up that morning and I remember receiving text messages saying how excited people were and were we finding out what we were having? The truth is for some reason I wasn’t excited, I don’t even know why. I had no reason to. Everything was progressing nicely and all my appointments had been ok and we heard his heart beating only a few weeks before the 20 week scan. Call it Mother’s intuition but something didn’t sit right with me that morning and I was nervous.
Off we went to the hospital for our scan, she called our name and in I was. I lay down on the couch and out came the scanner probe and the cold jelly on my lovely round bump! She was there for a while and unfortunately our baby was being a little monkey and facing my spine so she couldn’t see everything and asked us to go for a walk outside and drink some caffeine to get get him moving, but so far everything seemed OK.
So off we went for a little walk, blissfully unaware that our world was about to come crashing down around us.
After 20 minutes I was back on the couch cold jelly and scanner probe at the ready. It didn’t take her too long before so replaced the scanner probe and said she just needed to go and get someone else in. At this point we still didn’t think anything was wrong. I work for the NHS myself and we often go and ask for our colleagues opinion on things, so this was normal right?
The other technician came in and sat down, introduced herself and said that she had just come in to check some measurements. Now I can’t remember how long she actually scanned me this lady but looking back it felt like seconds as something clicked in my head, something was wrong. She replaced the scanner probe and turned to me and said “I’m really sorry but I think there is something wrong with your baby’s heart”.
My world came crashing down around me. It literally felt like someone had grabbed my heart, ripped it from my chest and stamped on it on the floor.
Now some things from this point are a bit of a blur to say the least.
I remember being ushered into another room with just a few chairs, a picture of a plant on the wall, a coffee table and a box of tissues on the table. A lady came to speak to us about having to go to another hospital for a specialist scan and could we go now? She must have said a bunch of other things too but I have no idea. I remember texting a few people like parents and may be close friends I don’t know and telling them that there was possibly something wrong with baby’s heart and that we had to have a further scan.
We arrived at the next hospital and sat down in the waiting area, my heart was pounding in my chest, I don’t think my husband and I said two words to each other. Neither of us knew what to do or say or what to expect.
My name was called and in I went, there was three people in the room. A specialist nurse and two consultants. I lay back on the bed, I had a screen in front so we could see what was happening and the big scanner at the side of me.
On went the cold jelly and scanner probe again…….
I squeezed my husbands hand so so very tightly, I didn’t let go, the tears were rolling down my cheeks. I was so scared of what they were going to say, I had a thousand questions and thoughts running through my head. I have to say the people in the room were extremely nice. They tried to chat to us and help us relax a little, the consultant even asked me what I did for a job…
I turned to him and said “I work in Cardiology”, his jaw dropped and that was a conversation stopper right there!
I was scanned for hours (in fact in total I think it was almost 4 hours that day that I was scanned).
Part way through they had to stop as baby had moved again and was facing my back so they couldn’t get everything they needed to. So off we went for another walk and more caffeine and chocolate! At his point all we knew was that there was a narrowing of the arteries. As we were walking around my husband asked me what I thought they could do for narrowing of the arteries. So my brain went into work mode talking through things I thought they could do, I mean surely it was fixable right?
After 20 minutes of walking around we went back into the room for the rest of the heart scan.
I don’t remember this bit of the scan at all (I have been told since that shock and such trauma can often cause memory loss). The next thing I remember is being asked to take a seat in the room next door. So in we went and sat in a very similar room to before, a couch and a few chairs, a coffee table, box of tissues and a picture of a plant on the wall.
The consultant came in with a pen and paper in hand.
As he sat there talking to us I remember, thinking this is not happening, this can’t be happening to us. He explained to us that our baby had four very severe heart defects. He had severe hypo-plastic left heart syndrome, severe aortic stenosis, severe aortic coarction and a huge atrial septic defect. I couldn’t believe what he was telling me. I sat there in disbelief trying desperately to take it all in.
Then came ‘the choices’………..
We had several ‘choices’ (I use these ‘ ‘ as to us we don’t feel like we had a choice), we could continue the pregnancy and try and save his life, which would require 5 major heart operations within the first year of his life, the first very shortly after birth and eventually a heart transplant. He would suffer, he wouldn’t have been able to walk, talk, breathe, eat or play properly. Each operation would be a 50/50 chance of him surviving, he would most likely suffer and even with a heart transplant he would most likely die by the age of 20.
We could continue with the pregnancy to the end, go into labour and just not intervene and let our baby die peacefully. Our final option was to chose to deliver him early and ultimately save him suffering.
I couldn’t believe it, just yesterday I was sat getting excited that I was half way through the pregnancy and half way through paining the nursery and sorting through some of the clothes we had bought……and now I was sat deciding the fate of my baby and ultimately when would I let them die? This week or in a few years after lots of operations and suffering? He left us for a few minutes to give us time to think. To say we both broke down into floods of tears is an understatement of the century!
What had we done wrong? Why was it happening to us?
In the end it all got too much and we just wanted to go home. We told them we would phone the following day. So off home we went.
That wasn’t the end of it though…….
We had to tell our family and friends. How the hell do you tell your parents that their grandchild they were so excitedly expecting was so severely poorly and broken that they were going to die?!
The next few days are a blur. We had a few visitors. People brought us food, chocolates etc. I phoned the hospital and gave them our decision.
My husband and I decided that we didn’t want to let our baby suffer and that we would deliver him early and end his suffering early.
We had to get our hospital bag ready to go in, I had to be induced to go into labour and deliver our baby that we couldn’t bring home. What on earth do you pack to take to the hospital when you are going to deliver a baby that is going to die?
I had to go in to hospital for a few hours on the Thursday to take some tablets and get my body ready to think it was going to go into labour. Or at least that’s what I think it was (terrible memory again!). My husband and I curled up on the bed together in the antenatal ward playing solitaire or whatever whilst listening to the expectant Mum’s outside on scanners hearing their baby’s heart beating away nicely…….
Friends and family continued to visit as I sat there, blank face, numb inside feeling my baby inside happily kicking away…….
Anyway in we went on the Saturday and everything was explained to us, we signed all the forms etc and confirmed our decision. We were in the butterfly room which is for bereaved parents on the labour ward.
I took the tablets and off we went. That was it. I had been induced and labour was going to start.
It took around 12 hours from the first tablet to our son actually arriving. I had contractions and everything. The pain was intense from my heart and my stomach. The urge to push came shortly after 1am, my husband pressed the button and the nursing staff came in. Our precious angel was born at 1:12am on the Sunday morning. He was utterly perfect. Ten tiny fingers and ten tiny toes. They wrapped him up and handed him to me.
Now I had been warned about this next bit, as our son lay lifeless and silent in my arms, my husband sat with me, he took a tiny breath! I couldn’t believe it! My heart kept with excitement and I stupidly thought for a second ‘yes he might be OK’ (I knew he wouldn’t be but it was that false hope for one second). I gave him to my husband and he had a cuddle too, he took another breath! We alerted the nurse, who said she had to ring a Doctor to come and see him. My husband handed him back to me and there he took his third and final breath in my arms. My son was gone.
The Doctor came and pronounced his death. It was official. He is now registered as being alive for 28 minutes.
Our parents came to the hospital to meet him and we all sat around drinking tea and eating toast. I never took my eyes off him. I let people hold him but ultimately the need to protect him was still there and I wanted to hold him all the time to protect him. It probably doesn’t make sense that but my son had just died, what is there to make sense of in such a tragic time of my life. Nothing was going to make sense again. My world had been flipped upside down, my life had changed forever, how could I possibly be the same person again after such a tragic loss?
As we sat there in silence I could hear the faint sounds of other ladies in labour and their babies crying whilst mine lay there in my arms lifeless. They say the worse noise in the world is silence and it’s true, we brought a baby into the world in complete silence. To say it was heart breaking was a complete understatement.
It was around 10am on the Sunday morning and we had to try and leave to go home. As my husband and parents gathered our things together I was giving my son a final cuddle. A final kiss goodbye. I final everything.
I had been given a memory box full of different things such as hand and foot prints, a matching teddy and leaflets……..I lay my son in his cuddle cot, I asked the nurse to look after him and out I went. My box of leaflets in one hand, my husbands hand in the other. I left the ward in floods of tears and screaming that I couldn’t do it, I couldn’t leave my baby. I wanted him back and I couldn’t leave him.
I have no idea really what happened after that. People sent cards and flowers, some people brought food.
We registered our sons birth and death and got the certificates (bloody traumatic I can tell you! I sat in the waiting room next to a baby!!)
We started to plan our sons funeral. What flowers to have, what songs to pick, poems etc. How the bloody hell was I supposed to plan my babies funeral? How was I supposed to sit and look at a bunch of god damn bloody flowers! I week ago I was picking out colours for the nursery and now I was picking the colour of his coffin and what song to be played etc!
The funeral eventually came and happened. The coffin was blue, the songs had been picked, blue flowers lay upon his tiny coffin. I bought a brand new blue top and asked everyone to wear blue. It was a lovely warm and sunny day. We had a lovely turn out of friends and family, the service was as perfect as it could be. We let balloons off back at home afterwards.
Having a funeral for your child is something I can’t even begin to describe. I mean your children outlive you not the other way around!
I once read somewhere that the human heart isn’t designed for this kind of grief and it’s true. It’s a pain like no other and can be compared to absolutely nothing.
No expectant parent expects to picking out a coffin for their child, it’s just not something your supposed to do!
The journey following the funeral was immense, there is so much to over come as a bereaved parent and so much that runs through your mind. Anger, guilt, pain and sadness to name but a few. So many question and so little answers.
Life after loosing a baby is by no means an easy one, there are so many fears we face, first Christmas, first anniversary, due dates, Mother’s Day, Father’s Day etc
Each once is so hard to overcome. Each one a reminder that your baby is no longer here.
Experiencing those questions for the first time, “how many children have you got?”, “have you got any children?”, “how’s the pregnancy going?” “What do you have a boy or girl?”
There are so many other things that you have to go through too, like people saying louts of wrongs things! Their heart is in the right place but believe me I have had a lot of hurtful comments on the past and still get some now!
Life seems to go on for everyone else and they get back to normal while your left with empty arms and aching heart, wondering why the hell did it have to be me and when will I feel normal again?! It’s hard to get back on your feet afterwards, it took my several months but thankfully I had some wonderful support.
The grief never ends as a bereaved parent, my loss is almost exactly three years ago now and sometimes it still gets harder to breathe when I think of what happened. I still don’t know how I got through it all, I just know I did because I had to! I still get upset at anniversaries and Christmas, Mother’s Day and Father’s Day. They will always be difficult because I will always feel like he is missing from our life. I personally like to keep his memory alive, I take him flowers, I have his pictures up at home, he has teddies and other bits on a shelf in our living room.
Life is very difficult for grieving parents after they are are born and the grief never ends.
If you ever come into contact with someone who has lost their baby, don’t be afraid to ask their baby their name, people never do and believe me it will make that parents day! They don’t want their child to be ignored or forgotten about!
 
There is lots of support online for people who have lost a baby or know someone who has lost a baby, there is help and information for other people on how to help someone who has lost a baby, what to say and what not say.
I will leave a few links at the end of this blog.
If you got to the end of this I applaud you as it was a very long one this one and for that I am sorry!
I wanted to tell my story properly though as let’s face it. This is the only part of his life that I can ever talk about ever.
Love and miss you always, my darling precious angel Ethan. His life a beautiful memory, his absence a silent grief.
Always loved never forgotten.
Forever my angel and forever my baby.
Hope you have enjoyed my second blog as much as I enjoyed sharing my story.

Emma
#dyspraxicdomesticatedmummy
https://www.sands.org.uk
http://www.arc-uk.org
Please feel free to leave comments below or get in touch via email.
There are lots more things I could talk about! It’s a never ending subject. If you would like more information or anything please ask.

Introducing Me! 

Hi.
So as this is my first blog I figured I would introduce myself properly! I am in my 30’s and live with my husband and our youngest son Alfie. Together in total we have 3 boys. My Step Son (William) is currently 12 years old and at high school. He comes to stay with us every other weekend and he loves being a big brother. I love being a Step Mum and we are lucky enough to have a great relationship.
I had my first son called Ethan in June 2014. He was born at 21 weeks and sadly passed away at aged 28 mins due to hypoplastic left heart syndrome, severe aortic coarction, severe aortic stenosis and a huge atrial septic defect. It’s a difficult journey losing a child that was so very much wanted and loved but his memory lives on in our house and he is still very much loved& a part of our lives and our thoughts. I will discuss more about the grief of losing a baby in a further blog as this one could take a while!
I got pregnant 6 months after the loss of my first born, to say the pregnancy was difficult is an understatement. Thankfully Alfie arrived safely in October 2015 and he’s my absolute world and brings so much joy to our lives. We are very lucky to have him.
After having Alfie I decided to work part time. I am very lucky and really enjoy the time that Alfie and I get to spend together. I just love watching him grow and explore the world around him. It’s amazing seeing his little face get so excited by new things around him. It hasn’t always been easy with Alfie though, the first few months were really hard, he had reflux and I suffered with anxiety. I found losing Ethan hard all over again now that I actually had a baby in my arms to look after, I knew exactly what I was missing out on.
Alfie is also dairy, soya and egg free and this is a mine field living with this! There are lots of struggles and will be sharing our path of this along the way.
I will talk about Alfie and the anxiety and intolerances in a further blog.
I started working for the NHS in Cardiology in June 2004 at Pennine Acute Hospital where I worked for the next 9 years. I gained myself a distinction in applied science and a second class hons in Clinical Physiology, specialising in Respiratory. Whilst studying my degree I found out that I had dyslexia and dyspraxia. It was a relief to hear that my struggle had a name and that there was help and tips out there to help me reach my end goal of my degree!!! Not everyone understands or has heard about dyspraxia, people who have heard often think or describe it as just being clumsy but it’s so much more than that. I will explain more about this and what it’s like living with it for me every day.
I currently work in Cardiology at Salford Royal which I really enjoy and I have worked here since October 2013.
Well hopefully I haven’t rambled on too much!
I look forward to writing and sharing things with you and about me in general!
Goodbye for now, chat soon. Much love ❤️
Emma
#dyspraxicdomesticatedmummy