Monthly Archives: October 2018

I have dyspraxia 

I’m not clumsy I have spatial awareness problems
I’m not stupid my brain is wired differently
I’m not forgetful my brain is in overdrive
I’m not gawping I’m taking everything in
I’m not shouting I just can’t define pitch or tone
I’m not ignoring you there’s just too much noise
I’m not scatty I just have many ways of organising
I’m not awkward with what pen I use, I just can’t hold that one
It’s not that I’m picky with clothes it’s just that I can’t use buttons
It’s not that I can’t speak. It’s just that I sometimes het confused and mixed up with words
It’s not that I’m thick, it’s just my brain can only process so much information
I’m not moody I just have problems controlling my emotions sometimes
It’s not my fault, it’s just that I have dyspraxia.
Having dyspraxia sucks big time. Especially at busy or stressful times, it just gets worse. Everything is heightened. You can just click a switch to turn it off or get an early night and hope it’s gone in the morning. It’s frustrating as hell and can sometimes be like living in a mini torture chamber.
You live with it every day. You adapt and find slower or different ways of doing things.
I am Emma and I live with dyspraxia………and guess what? Hate it!

A Dad's Grief 

Ok so yeah I’m not a Dad, you caught me out! This is just my take on a Dads grief. I am not saying I am right in what I write it is just merely from my point of view.
I have to say that Ste has given me mountains of support since that fateful day. If it wasn’t for him I would have crumbled completely. He’s the reason why I managed to keep going and why we managed to arrange a funeral for Ethan.
Anyway this isn’t about me this time……
Now something you should know first, not only have me and Ste been together for a long time now, I have also known him for a long time and I have never seen him upset. Like ever.
I remember the day we found out, (at the first scan) my hand squeezed around his. I turned and looked at him, may be I was after re-assurance I don’t know. As I looked upon his face though I knew he felt the same as me. He didn’t have to tell me. We were petrified for our baby’s safety. Speechless and scared together, we raced to the next hospital. Ste drove in silence, I just held his hand. He was my husband and I didn’t know what to say.
After the second scan when we sat in the room, that’s when it happened, my husband was speechless and tears ran down his face. As I wiped my own tears from my face I looked at him and for once, I didn’t know what to say to him. He was as lost as I was, then he said it, he said what I was thinking…….”what did we do wrong?” (Or words to that effect) I wanted to say we didn’t but in that moment I honestly didn’t know. He was as heartbroken as me and I didn’t know what to say. I just wanted to comfort him, my poor husband next to me with his head in his hands, we were gobsmacked.
I don’t remember us getting home and I can’t imagine Ste noticed the drive either.
I remember him washing my new car for about 3/4 hours that week while we waited to deliver Ethan. He just looked so lost, he kept himself busy yes but it was like watching a robot. Going through the motions of heating up dinner and putting pots away. He was doing it but not really there.
Something that has upset me since having Ethan, not many people ask how the Dad is doing in all this commotion of your baby dying.
I mean yeah I carried Ethan and gave birth to him but my husband had to watch me go through all this, it must be awful.
I remember someone once said to us it was awful hearing the silence from his cousin who lay in the corner of the room. I agree. Silence from a baby is the worst noise in the world. My husband walked away as this friend said this to us. All he said was he’s wrong. Apparently when I left the hospital I screamed whilst I left my baby lifeless in a cot with a nurse I didn’t really know. May be that was it for my husband.
I can’t imagine what he must have gone through, whilst grieving for his son and watching his wife suffer along side him. People comforted me whilst Ste put the kettle on for people visiting.
My husband rarely talks about how he feels about Ethan, unless I ask him a direct question. I have to read between the lines so to speak and it does make me sad, however I do know this. My husband loved our son deeply and misses him just as much as I do. Apart from the fact that he’s his Dad he also has Ethan’s handprints tattooed on his chest, which to me speaks volumes. He wouldn’t do that if he didn’t care.
Watching my husband suffer as he did, more or less in silence was worse than hard, it was awful.
My husband carried our sons coffin on the day of his funeral. That to me. Is a real man, a tower of strength.
I love you Steven Shepherd. Thank you for your strength in helping me in our continued journey of life after Ethan.
To finish off this final blog, I asked my husband if he could share his thoughts and feelings. I asked him a few questions and these are his replies. The fact that my husband has taken the time and agreed to star in my blog really does mean the world to me.
How did you feel when you found out at the scan that Ethan had severe heart defects?
Wounded/devastated/numb. It was like bad dream, everything hazy like it wasn’t real.
How do you manage in everyday life when people ask you how many children you have?
I tell them I have 3 boys, 2 living 1 not. I’m not hiding Ethan and I’m not savings others feelings, whether that be awkwardness or sorrow to deny my son’s life. He was born and took a few breaths and he died. Sounds harsh wrote down but that’s what happened. He’ll always be my son.
How did you cope watching your wife giving birth to your son and afterwards?
Numb and in shock. The hardest moment of my life and I don’t think anything will top that. The sadness in her face and grief is something I won’t forget, even if I don’t talk about it, it’s something I live with.
What’s the most important thing to you since loosing Ethan?
Carrying on with life, yes we had a child who passed away and that’s devastating but life goes on and to not carry on would impact everyone around us negatively. Sometimes it’s hard, but I’m stubborn and push on, I’m not one to show my feelings which makes it easier as people don’t ask questions.
Anything else you want to add or advice for other Dad’s that have lost a baby?
Be strong for your partner and family offer support, try to carry on and don’t become distant. If you need to help and support don’t be afraid to ask, you can’t put yourself in a position where your mental health starts to be affected so swallow your pride and seek help if needed. Speak to friends and family and most importantly your partner – whilst this wasn’t something I did often the one or two occasions I did helped me.
Thank you for reading my blogs this week.
Emma xx

The cut off point 

Here’s an interesting fact for you. Did you know that despite having gone through real labour at around 20 weeks gestation you won’t get a birth certificate for your son or daughter that you just pushed out and had hours of contractions for?
It’s all a bit complicated to be honest so let’s start with the facts first and foremost.
1. If a baby is born alive and dies, however the length of pregnancy completed i.e. gestation the birth and death must be registered despite the length of time they are alive for. This follows the same registration as any other death.
2. If a baby is stillborn, i.e.born dead after 24 weeks, the stillbirth must be registered in the stillbirth register. This combines features of the birth and death registration. I do believe that you can in most work places be entitled to maternity leave also.
3. A stillbirth before 24 weeks is not recognised. There is no registration, no certificate of acknowledgement for your baby you just gave birth too. Nothing. No legal trace. Despite having gone through real contractions and labour.
Oh yes, do not be fooled, if your pregnant and your baby has died or will die, that baby had to come out which means you have to go through contractions and labour and deliver that baby. Same as you would if it was going to live. I mean i guess you could have a c-section, but most hospitals I imagine will encourage you not to have such an invasive procedure but don’t quote me on this. Either way, even though the labouring part may be a lot shorter, that baby is being pushed out by you, it will be born without a cry, without a movement without air on their lungs.
Now to me this seems harsh, so if your 23 weeks and 5 or 6 days pregnant. You’ve had contractions for hours on end, spent however long delivering. The intense pain of delivering a dead baby and what do you get to show for it? Nothing. So I’m years to come if someone does your family tree, there will be Jo trace of that baby that you delivered naturally or by c-section.
Now in some cases I feel very lucky. Ethan was born at 21 weeks and 2 days and was born alive. The dates for me are extremely important. As we chose to end our pregnancy, of this had been after 22 weeks gestation, I would have had to have a needle straight through into Ethan to stop his heart. Then he would have been stillborn and there would have been no trace of him ever existing apart from my memories. However, he was born before 22 weeks and was born alive. This may have seemed like a cruel twist in my journey but I thank him every day for being born alive as now I have a birth certificate and a death certificate. I can now prove my son existed. Not only that, in the eyes of the law, he was a person aged 28 minutes old.
For someone who has lost a baby, ok I didn’t loose him, he died but still….you know what I mean……acknowledgement is EVERYTHING. Not only the acknowledgement of those aprons you but in the eyes of the law. Now SANDS do have a certificate that can be used and adapted for parents for a stillbirth before 24 weeks but I can’t imagine this is the same?
This Bill was challenged I believe in January 2014. The following is taken from
https://www.parliament.uk/documents/commons-library/Registration-of-stillbirth-SN05595.pdf
In January 2014, Tim Loughton (Conservative) introduced a Private Members’ Bill, intended to enable registration of a baby stillborn before the threshold of 24 weeks. The definition of stillbirth was to be based on the experience of giving birth. This Bill did not progress any further.
Tim Loughton has also raised the issue of registration of stillbirth before 24 weeks of pregnancy in other Parliamentary debates, speaking of the arbitrary nature of the 24 week threshold. He highlighted one particular case where twins had been stillborn either side of the threshold and were treated differently for registration purposes.
There have been a number of petitions calling for the law to be changed, to allow the registration of a stillbirth before the 24th week of pregnancy.
Sadly the law is still as I mentioned at the beginning and these challenges have never been passed.
Now I realise there has to be a cut off point but surely it can be altered in some way so that in certain circumstances and situations people can register their baby as a stillbirth. I know there is probably a lot more too it but it’s not hurting anyone surely so why can’t we grant these grieving parents their wish of a stillbirth registration to prove their baby existed. However I do understand that there has to be a cut off like I said. It’s a complicated one but sadly it’s one that leaves many parents feeling even more hurt with everything surrounding their dead baby.
Babies are not considered viable until after 24 weeks gestation, meaning from this point it is possible for them to survive but they would need special care in specialist facilities.
The other complication just to add to everything is when a baby is born alive and horn early, when can doctors intervene and when do they leave the baby to die. I read a lot of www.bpas.org and on their it says that from 25 weeks and 0 days longer there is a ‘general agreement’ that babies can survive and therefore active management should be offered. I am sure this isn’t as cut and dry as I have read though and may be each individual hospital may have different regulations. The thing is young these cut off points are hard. I mean can you imagine going into early labour and the doctors refusing to give your baby treatment and therefore you watch them die in your arms despite being very much alive just struggling. I know there are laws and there has to be rules and cut off pints etc but seriously, I do think that these laws should be analysed. We should be able to write a longer more detailed complicated law that fits as many situations as possible so that parents aren’t suffering even more than they have to.
I guess we are living in a dream world though hey.
Please be aware then any information I have given has been taken from the websites I have provided. The rest is my own personal view. I am not saying that everything I have written is correct, it is knowledge I have from experiences and also from what I have read. Any questions surrounding a birth should be taken up with your local hospital.
Thank you

Grieving for others 

For a while after your baby dying you tend to live in a bubble. People, cars, the t.v. It all keeps moving around you. The cheese in the fridge goes mouldy and the milk goes off, as you just sit there on the couch, in silence and stillness, letting everything around you pass you by. You wonder what you did wrong, why did it happen, were you evil in a past life, relaying every second from when you found out your baby was too poorly to live until the last moment you laid eyes upon them. It’s like a replay over and over. You can hear people, sometimes you talk back, sometimes you move. You clutch the blanket they were once wrapped in.
It’s not until some time down the line that you realise others may be grieving too.
There’s a lot of things I regret that I have to live with since finding out Ethan would die.
I deeply regret the way we handled our parents. The thing is as I mentioned at the beginning there’s so much going on and it really is like a bubble it’s just impossible to snap out of that.
I guess what I am trying to say is, for a while I didn’t notice that our parents were grieving too. They were helping us so much in keeping going, getting food and looking after William etc that it didn’t occur to us at first that they hurt just as much.
I feel so terrible now. It makes my heart ache with sadness. They didn’t just loose a grandson though, they had to watch their own precious children go through unimaginable pain. I’ll be honest I can’t imagine having to stand by and watch Alfie go through something like this. You want to wrap your kids up in cotton wool don’t you and not let them feel pain? I’m guessing it doesn’t change at whatever age they are.
My point to this is, Grandparents grieve too, not just for the baby, the grandchild they should have had but also for their own children that are in so much pain and they can’t fix it.
Then there are your friends, how do your closest friends manage? What do they say? I can’t imagine how hard it must have been to be friends with me after Ethan dying. I mean do you act and talk normally? Do you creep around, do you leave them? I don’t think there is any right or wrong way to some extent. I think it all depends on the person that has lost the baby and how they are as a person.
Ste is a straight forward matter of fact person, the type that wants to get on with things so to speak. I tend to dwell and I am a very emotional person, so I imagine it was like walking on eggs shells around me lol.
To my friends who read this, I am sorry if I was hard work but know this. For those of you that stood by me and that stand by me still no matter what. If it was a meal, a hug, a text, helping with funeral arrangements, memory gifts or all this and more. I thank you. From the bottom of my heart I thank you. I know I was a zombie and I can’t imagine how hard I was to be around but for this I am grateful, you stuck by me when I needed you the most and for that I am truly thankful.
In my last part of today’s blog I have three last things to say.
1. To my friends and to Ethan’s Grandparents, I often think of how we broke the news to you and it makes me so sad you found out this way. I wish I could turn back time and do things differently. Among taking more pictures it’s one of biggest regrets.
2. To Ethan’s Grandparents, nothing makes me more happy than knowing that you got to meet our precious son. I will never forget those happy memories that we share together.
3. To everyone other than a grieving parent, be you a friend or relative or Grandparent………the parents know you are there. They know you are grieving too and one day, when they emerge from the bubble they are in. That parent who just lost their baby, they will be ever eternally grateful for everything you are doing for them and for sticking by them.
Here’s to all others that grieve for the babies that never made it home xxx

Mummy did I have a brother?

As you all know by now Ethan was my first born son. After we conceived Alfie my main focus was to focus on getting through the pregnancy without breaking down in to floods of tears too much. Then there was the focus on of he was healthy, the giving birth, would he survive etc etc etc.
Then after the nurses let me take Alfie home (I still remember that disbelief feeling, that question, “what, you mean I can actually take home home? I can keep this baby?”
Anyway I am straying from the point of this blog! After bringing Alfie home, obviously things we’re chaos for. While, settling in with a new born.
Then one day I as I gazed upon my rainbow baby smiling up at me, it dawned on me.
What on earth was I meant to tell Alfie?
When Ethan died William was 9 years old. So he was old enough to understand that Ethan was poorly and we had to deliver him early. He wouldn’t survive and he would go to heaven. Children are quite resilient and William took it quite well. He asked questions over the coming weeks, he didn’t come to the funeral. He didn’t want to which was fine. He asked me once about what was wrong with Ethan’s heart and I drew a picture for him. He relayed this back to me and he was content.
Over the years he hasn’t opened up much but I know he cares and he’s great about all things Ethan related and likes to be involved.
It was hard though as his Step Mum and may be Ste feels the same I don’t know, but for William we had to break his heart (in a manner of speaking, emotionally). He was expecting a sibling and instead he got memories.
Alfie will grow up with one brother here one in heaven. I mean how do you cope with that?
Obviously at the moment Alfie doesn’t really understand. We talk about Ethan and he can point him out on a photograph, he knows the bear is special and that it is Ethan’s bear. As you all know by now I am passionate about keeping Ethan’s memory alive and keeping him very much a part of our family, so hiding Ethan from Alfie or not talking about him is not an option.
So how do I explain to my almost three year old that he had a brother that now lives in heaven?
What kind of questions will arise in the future? I am sure there will be plenty and some of which I will have thought of and some not.
Why?
When?
How?
Alfie asked me the other day what my pin was for that I am wearing this week.
So I turned him round and sat him on my knee and I asked him did he want me to explain to him? So up on Alfie agreeing that he wanted to know I kept it simple and explained as best as I could.
Through fighting tears I explained to Alfie that before he was born, Mummy had another baby, that was unfortunately very poorly and he couldn’t come home with Mummy and Daddy and instead he went to heaven. I pointed to Ethan’s picture and said, that’s the baby Mummy had. I told him Ethan’s bear was special as it is a part of Ethan but that he is very much looked after in heaven. I explained that this week we are remembering all the little babies that had to go away and lighting candles for them.
Then the tears fell as Alfie turned and said to me……..”Mummy I don’t want him to go away……….I want him to come home with you”
It broke my heart. Then he said to me, I want to be with you and Daddy.
Oh Christ. My poor baby. All I could do was to give Alfie a huge cuddle and tell him he will always come home with Mummy and Daddy and that he is so so very special, I said that Ethan is with us all the time and that talking about him and remembering him means he is still with us.
Now this only lasted for a few minutes and Alfie was fine after, like I said children are resilient. It gave me an insight though into all the future conversations.
Would Alfie be angry at us at what we did?
Would he grieve in the future over the brother he had?
Would he have problems, doubts and are over his children that he might have?
There’s all kinds of doubts and fears that I have over what will come of Alfie asking about Ethan. I have no doubt he will ask at the most in opportune times but hey that’s what kids do right?
I know at some point all children have to learn about death, I just wish that we were starting with a pet that’s died and not a brother that he once had. The pets I have will out live me and be left to the boys so he will never leant that way.
Alfie will learn the hard way, by growing up in a family were there was once a baby that lived and died.
I think now though, 3 years after Alfie was born. It’s now become just a regular matter of fact things about teaching Alfie about Ethan. I guess I just wanted to write this to show that there are all sorts of obstacles about grief and it’s not just about you as a parent. It’s also about the living children you ,any have and what on earth do you tell them. The rainbow bubble is nice for a while, but the reality sets in that one day, they will want to know.
Alfie you once had a brother, his name was Ethan. He was too poorly to stay and had to go to heaven and live in the stars, he couldn’t come home with Mummy and Daddy. You can always come home with us though baby. Always.
R.I.P Ethan Shepherd

Marking Occasions

Before the unimaginable happens (your baby dying), I guess this kind of thing will seem strange and odd to some people.

I mean, why would you want to remember your baby that died? Surely that upsets you as a parent even more? Wrong!

It’s not remembering them, never speaking their name and other people ‘moving on’ and forgetting you might still get upset, that’s worse. It’s like they never existed. I mean we talk about other older family members that have passed don’t we? I talk about my Grandad and reminisce frequently, so why is it any different for a baby that I held and watched die?

Ah right yes that’s it………because no one wants to upset you and watch you cry. People get scared of people that cry, they never know what to say. Also my guess is because we didn’t get much time with them it’s like we don’t have right to talk about them because we barely knew them.

If you have never had to watch your baby die in your arms, let me describe it to you……

Take yourself back to that blissful moment when they arrived. When you were wrapped up in awe and magic and wonder. Nothing else mattered in the world because your beautiful perfect baby was here and all you wanted to do was to love, protect and care for them. You want to share them with the world and do everything you can for them.

Now imagine your insides have been ripped out and someone trod on your heart on the floor. Your baby is now lifeless in your arms and took their last breath. Oh crap hang on, the nurse is here, you’ve had your time with them. She’s telling you that you now have to say goodbye and leave. You’ve had your time with them, now you will never see them again. Ever.

Hurts right? Was I too harsh? Was I too blunt? Should I have sugar coated it? Nope. Why? That’s the harsh reality of having lost a baby, a baby that died in your arms.

I do everything I can in my power to make life good for Alfie, I love him and protect him, I care for him wih everything I can possibly give him. So why is it any different with Ethan? It’s not. I am just doing what any Mummy wants to do, I am protecting his memory. It helps me a little bit in my journey, so people don’t forget him……and the way I see it, if we can talk about and share memories etc about other loved ones why can I not do it with Ethan? Makes no difference.

So yeah, I might get a cake on his birthday every year, I might buy things in his memory but the truth is, it hurts too damn much if I don’t. This way, it might just hurt a little bit less and that way I still feel like a Mummy to my baby that died in my arms.

Ethan Shepherd

R.I.P.

08.06.14

28 mins old

Born alive

I love you so so much baby boy. So much that it hurts.

Am I a Mummy

When did I become a Mummy and who made me a Mummy?
William aside from this, the question remains was it Ethan or Alfie that made me a Mummy?
Many people believe that because I gave birth to a baby that died that I wasn’t actually a Mummy.
I’m not sure why though. I mean I carried him, I gave birth. Contractions and labour the lot. He was alive for almost half an hour when he was born so why wasn’t I a Mummy at that point?
Ah yes I get it. My baby didn’t exist is that right? So because I didn’t change his nappy, change his clothes or feed him or indeed bring him home I’m not a Mummy is that right? Wrong!
I honestly beleive that he made a Mummy. It’s a different kind of Mummy to what I am with Alfie but I am still his Mummy.
Not only did I birth him naturally I protected him from harm. I saved him from torture and suffering. I saved him. I made my first biggest decisions as a Mummy for Ethan.
I may not have brought him home and done all the ‘usual and ‘normal’ things with Ethan as I did Alfie but he was my first.
He also taught me what true love was. Seeing Ethan was honestly love at first sight, he taught me what it was like to love your child whole heartedly no matter what. I fell in love and wanted to love and protect him no matter what. My heart and my body told me I was a mother, even if the basket in my bedroom at home lay empty.
So to all those Mummy’s with angels babies and no rainbow or sunshine. You are still a Mummy.
A Mummy is defined by the love in your heart that you give to your child no matter what. Not by how many live or how many you adopt or have via a surrogate. If you have carried a child in your heart if they are here or gone forever……
You. Are. A. Mummy.
Never ever let anyone tell you any different xxx

Waves

You’ve probably heard it before but grief really is like waves.
I mean I am 4 years along my journey now after Ethan dying.
I am in a much more different place compared to where I was. I get up and get on with my day and leave the house without having a panic attack. I can talk about him without welling up. I can say his name and think about him without breaking down.
I mean yes I get upset about him still……..birthday / anniversary and Christmas. To me these are like ‘obvious’ times that people know you will be upset.
What about that random Saturday night though last month at family movie night though? What about when Alfie said last week, don’t worry Ethan I will protect you. Or what about when William just took Ethan’s bear down for a cuddle while we sat chilling on the couch? Or what about that song that came on the radio recently?
That’s the thing with grief though, it catches you off guard. It comes in waves.
You can visit your sons grave one day and be completely ok. Then days later you are sat in your car just driving along, all alone and bam. It hits you. The tears roll down your face and you just can’t control it anymore.
For that moment the wave crashed and hit against the rock. Tears falling then you take a deep breath. Dry your eyes, remember that you did do the right thing. Your son is now safe and pain free and that no one judges you. You know that for now you will enjoy the sweet smell of your youngest, your rainbow and that one day. One day far into the future, you can smell that baby smell one more time when you hold your first born in your arms once more, but for now. He remains a memory and that’s ok, the wave calms again. Until the next time it comes crashing around the rocks once more………

R.I.P Ethan Shepherd
8.6.14
28 mins old