Our beautiful baby daughter Anabelle was born sleeping June 2010.
Blessed with the screaming arrivals of our gorgeous rainbow sons,
Alexander October 2011, Zachary November 2013 and Lucas July 2016.

After Anabelle - Raising Rainbows
Heartbreak. Joy. Death. Life. But most of all Love.

Thursday, 31 January 2013

I'll Be Your Clown

I'm having an emotional week. Call the Midwife started it, then OBEM added to it, as did a moronic thread on Mumsnet, had a night of bad dreams and Emeli Sande "Clown" has finished me off.  Over-sensitive. 

Sunday, Call the Midwife told the story of a baby who died a few hours after birth. There was no warning for the programme but as I didn't  get around to watch it 'live' I got the gist of it from facebook anyway before watching it on iPlayer the next day. There was no warning on iPlayer either. I'll be honest, I questioned whether I should watch it from the comments on facebook, that is was harrowing, but decided to be brave. I wasn't sure how I was going to react to it initially. It was fairly graphic in parts I suppose, but I watched in numb. I didn't sob through it, I didn't really feel much at all through it. Was it because I was 'expecting' it from facebook? I don't think so. Sometimes I think I'm becoming harder hearted. I watched it and thought 'Wow' that was me, I was that mother, Jon was that father, Anabelle was that dead baby. Not in those circumstances, but we were those people, are those people. The bereaved parents. 

But Call the Midwife obviously did affect me, a delayed reaction, in its way I suppose. A little bit later on in the day Alexander had a sudden spurt of confident standing. Lots of pulling himself up and letting go, looking at me as if to say 'Look Mummy, no hands'. He was so proud of himself, so excited that he could do it, and knew he could do it. He was standing up and shouting 'YAY' then sitting back down and clapping himself. It was this, my proud little boy that triggered my tears. Because I'm as proud of him as he is of himself, more proud, and because his sister didn't have the chance to learn all these wonderful things and be proud her herself. I held him tight and cried for his sister. I miss her. Would I have still cried if I hadn't not long before watched Call the Midwife? Probable to be honest, but I guess thinking about the 'early days' exasperated the thoughts somewhat. 

Should Call the Midwife have come with a 'warning'? Maybe. It was directly portraying infant death, in a fairly graphic way. But regardless it wasn't the portraying that upset me. I live with it every day, my reality, my grief is every day. Other people described the episode as harrowing.  Call the Midwife this week was bold, but even the glimpse of this life portrayed on TV didn't really scratch the surface of what it is really like to be me. So is that what my life is? Harrowing? 

However the portraying in Call the Midwife is very different to mentioning this week that has happened on another channel.  

One Born Every Minute.  I stay away from it because I cannot cope with the happy endings, still. I've not watched it since Anabelle died. Not because of the distressing content, that others would perceive as distressing. My distress is the happy endings. I'm jealous I suppose that I have never, will never and can never experience birth in that way. Yes, we have had Alexander, and Alexander lived, but his pregnancy, his birth was filled with so much fear, a fearful experience rather than one filled with naive expectation. The innocence of pregnancy, the pure excitement, has been taken away from us. 

Last night, through the grapevine, forum threads etc. I heard OBEM had shared the story of a baby loss family and them having their rainbow. Much like an episode last series I suppose. Last night people were upset that there had been no warning of the content before the episode had aired. 

I took it personally. I know I shouldn't. Over-sensitive. 

OBEM were not showing infant death. The were showing rainbow birth. A baby like Xander. But of course their birth included the mention and story of their sibling before them.

I'm told the details of stories like this upset pregnant women, anxious people, people with baby loss history. That it is sensitive and shocking and people need a choice whether they want to watch it or not on TV. The programme should have come with a warning.

Maybe they do, but like I said I took the thread personally. The word warning in this context personally, because it was just somebody telling a story. It could've been my story. There was nothing graphic to see.  Just a dead baby mentioned and their story told. Do I need to come with a warning? 'Watch out, she may mention her dead child and it might upset you' label? 

You would be surprised  possibly, how often bereaved mothers are accused of scaremongering.  It has been seen often in the past on Mumsnet, other bereaved parents tell their stories of being accused of scaremongering in real life. The lady who's child is born sleeping is accused of scaring pregnant women if she urges them to contact their midwife with the littlest of concerns, if she urges pregnant women to really concentrate on their movements, to not delay at all if they have slowed down. The mother who's child dies of a routine childhood illness, who urges others to take the virus more seriously and have their child vaccinated to protect themselves and everyone else's children too is accused of scaremongering. The mother who's child dies in an accident who urges parents to wrap their child up in cotton wool and be super safety conscious is accused of scaremongering. 

Scaremongering if we tell our stories, because we remind people that yes, children die. It isn't something that only happened a long time ago. But you see we are not scaremongering. Not intentionally. We just desperately want to protect you from our life, those of us brave enough to tell our stories, we want your children to live. We simple want to raise awareness, we want our precious babies and children acknowledged. Not hidden. Not a scary little secret. 

Being a bereaved parent isn't catching.  Although sometimes it feels like it must be, because of the reactions of others to our stories. So often I feel like I should have that label, that warning. At baby groups when I've been asked 'Is he your first?' and the answer is met with no and my story, and then the awkwardness. 

It is tiresome living in a world where it feels like 'them and us'. Bereaved parents and Non-bereaved parents. Tiresome having to worry about how other people feel around us. Them and Us, another reason why I need to go to the local rainbow baby mother and tots group. A room of understanding, no warning needed, no awkwardness met. 

Then there was the moronic thread on Mumsnet. The gist; don't mention your dead on facebook. Tipped me over the edge a bit. We have such an unhealthy attitude to death and grief in our society. Unmentionable. Taboo; infant and child death especially. These attitudes are so hurtful when this is your life. Every single day life. 

Last night I went to bed unsettled. I didn't sleep. I had bad dreams.   At 3.30am I startled awake shouting "Where is the baby? Where is the baby?" bolt upright in bed. Bad dreams. 

You see, I could understand if there had been public calls for a warning before Call the Midwife, or support services listed for those affected at the end. It tried to show a real situation, with realistic props, graphic in parts. Is the difference because Call the Midwife is a drama but OBEM a documentary? A fictionary situation vs. real people? Acting a story vs. living a story?  But I didn't see calls for a warning for Call the Midwife. Why did this specific episode of OBEM need one when it was far less graphic? Merely what would be my life story being told?

Maybe I am harrowing.

But I am trying to be understanding of others anxieties, I get it. Honestly, I've had an anxious, utterly terrified my baby was going to die again pregnancy; but I couldn't escape the scary stories, I live the scary story. There was nothing I could do to protect me.

For that reason maybe OBEM in general needs a generic warning; not specific to baby loss, but a warning that pregnancy is unpredictable, anything could happen, lots of different aspects of the whole expereince could be distressing. Baby loss is just one of those aspects, maybe I would be less upset if we were not singled out as the frightening ones. Not singled out. Not them and us.

As an aside I would bet lots of people with baby loss history watched OBEM last night because it was sharing a story of a rainbow baby. Like I did last year. A show of solidarity, support for one of us, brave enough to share.

Today Emeli Sande has made me cry. Her latest single "Clowns" is full of something I can relate to. I'm not sure what, it isn't about baby loss, but somehow, sometimes, something in it fits me. "I'd be smiling if I wasn't so desperate, I'd be patient if I had the time. My life's a circus-circus round in circles, I'm selling out tonight." I listened to it on the way home with the baby and realised I had tears rolling as I drove.

Feeling over-sensitive.


Tuesday, 29 January 2013

#18 Websites

I'm going to skip question #17. Simply because it is practically the same questions as #2!  So I'm going to jump on to #18...

My current favourite website is...

Personal Blogs  

I don't really browse too far on the internet to be honest. I stick to the websites I know.  I spend a lot of time on facebook, twitter, a small forum, pinterest, Mumsnet bloggers network.  I follow and read a number of blogs, I blog, it is a community. Blogging is a conversation; carried on after the post has finished with comments, facebook connections and tweets. I love responding to people's blogs and having mine responded to. 

I like the live blog roll on the Mumsnet bloggers page, most evenings I browse through and click on lots of random posts when the title takes my fancy. The last random read I found was Mama Marmalade; a post about spousal irritation. It was witty and entertaining and familiarly like Jon and I! I like her writing style. I'm now following her on twitter and enjoyed the latest post of bargaining with siblings too. I can identify with her! 

I enjoy reading blogs, I try and read widely and explore many parenting blogs, current affairs and campaign blogs, political blogs, crafty blogs and of course a number of fellow bereaved parent blogs. 

Blogging is becoming increasingly popular and I don't think that is a bad thing at all. Like forums, blogging connects people, allows people to share in others lives in a real way, gives normal every day people a voice to be heard, helps people relate to each other, allows stories to be told, awareness to be raised, passions to be followed, allows education on a range of subjects and ideas. Blogs are becoming little personal websites, a space on ready made platforms, or your own platform if you choose to.  It is easy to find similar people with same interest and same passions, as well as find completely different and interesting new people! 

As well as Mama Marmalade (above), these are just some of the blogs I'm regularly reading at the moment.  I hope you enjoy them too, in no particular order...

Monday, 28 January 2013

#16 In Love


Who are you in love with?

Alexander 

...and Jon of course, but when Alexander came along I told him a new man had stolen my heart! My baby boy! You could rephrase this question "What are you in love with?" and the answer would be along the same  lines; 'Mummyhood'.   

So everyone must have seen the Fiat 500L advert by now, the one with the 'Motherhood' song. My friend posted it on facebook and tagged me, and later told me as soon as she saw it she thought of me! Especially the line 'flooding up your timeline with my baby news', apparently. 

I can't fathom why! *wink wink* 

Should I be offended? No way! I completely unashamedly know that I do flood timelines with my baby news. I don't care, I think most people like the news and photographs I share of Xander. They get enough likes and comments anyway!  I'm a heart and life on my sleeve type person, I share a lot here, and I share a lot on facebook. Some people might say too much! We live in social networking age, a digital age and I'm immersed in that, I love sharing my beautiful boy with my friends and wider circle. 

I'm so proud of him and what's more I'm so proud of the joy he gives me and Jon. I can't help but want to shout from the rooftops everything that he is to us, everything that he can do, everything that he is learning and simply how amazing he is! I guess the modern day version of shouting from the rooftops is facebook. 

I love love love being a Mummy. I'm not trying to be a smug Mummy by saying that, I just honestly adore this role. My heart ached for so long to 'mother', it still does, it still aches to mother Anabelle, but it is filled with so much bursting pride and love mothering Xander. 

I often wonder how different being a Mother would have felt if Anabelle had lived. Would I have the same level of appreciation I have now? Would I still be grasping each day like I do now? Would I have lost patience more quickly with broken nights sleep or have been more exasperated on bad days? How differently would our children have been treated if one of our children hadn't died? Would there be difference? Would it be the same, I don't know. We'll never know. 

Now of course that isn't to say I never lose patience, or never get exasperated with day to day things. I do, I really do. Tiredness gets the better of me, usually Jon gets the brunt of it.  I have bad days like anyone else where I just think 'Five minutes for a sit down would be great'. I'm also aware Alexander has been an 'easy' baby. We've been lucky. He mostly sleeps though, he eats well, he entertains himself with his toys and plays nicely, he isn't a demanding child. So I'm not professing to be super Mum or anything like that. It could all change on the next one if they are more demanding! But I've never wistfully daydreamed of my life before children. I honestly mean that, there is nothing I miss before children. Again, I don't think that makes me better than anyone else, its just genuinely how I feel. Maybe that means I didn't have much of a 'life' before children, nothing interesting going on!

Or maybe it is because my arrival into motherhood was beyond the realms of my imagination. My first experience was death and grief, Anabelle. Broken nights sleep and being under 'house arrest' pales into comparison.  It is little wonder I then embrace everything that Alexander brings with him. I guess I just mean that Alexander came along and healed some of my raw edges after Anabelle. He fulfilled something in me. I think this is the part of my life that was supposed to shine.

Somebody once said to me I was 'born to be a mother' - I really think I was, I'm happy for "mother" to define me, this feels like what I was always supposed to be doing, my life revolves around my babies because I want it to. Being Mummy feels natural to me. 

Jon and I were saying the other day we feel we bring Xander up differently than how we might've expected to with Anabelle. We love him differently, not more, but there is something different about him, about us. We can't seem to put it into words exactly what we mean. Maybe because he is a rainbow. We certainly have an appreciation for his life, the fact that he is here at all, we're sometimes overprotective, cautious, neurotic, over the top even. We don't assume we're in the parent-club for good, as the video describes and as we know it now, because we're too acutely aware we cannot take his life for granted.

We take (and share) so many photographs. I'm not going to apologise for that!  Simply I over share on here, on facebook, because I can! I can because he is here and alive, the preciousness of which will never be lost on me, it is a momentous privilege to be a mother.  I feel compulsed to document every moment of his life, because he changes so quickly and I'm scared we'll miss something, or if we were to lose him too I'd have missed too much and not have kept enough memories. 

We regularly wish we had more photographs of Anabelle, different photographs of Anabelle. That we had taken more time and thought when capturing her. I wish I had better photographs of her little hands and feet. In the shock of  it all there was no time to think about the quality of photos. We have what we have, and what we have of her is precious. But these feelings of regret, I suppose, directly influence the time we spend capturing and sharing everything about Alexander.

We love Alexander with pure relief that he is here, he engulfs and enriches us and we are just utterly in love with him.  I hope he always knows just how much. 

So yes, the Fiat video does seem strangely familiar in parts, but I wouldn't change it for the world! 





Sunday, 27 January 2013

Picks of the Week Four


Rough and Tumble Fiz

An epic 14 and half hour get better sleep!

A very bubbly bubble bath


Holding Mummy's hand as we walk along!


Awww


Ball pool fun! 


Empty ball pool! Loving it!






#13 #14 #15 Today

I'm behind. It is apparent I'm not going to finish January's part of 365 Questions. I think I'm going to just leave the left over questions at the end of January and just move on to February... anyway... a bit about my day today. 


What did you have for dinner today? 

Roast Beef

We joined my Mum, Dad and sister for roast lunch, like we do 95% of Sunday's now. It started off as a meal in the week while I was on maternity leave, but now its become our routine and I love it! We only miss it if we are away or have a different activity arranged. It is my favourite meal of the week. Mum and Dad cook up a great roast; fresh veg, fresh meat. Can't go wrong. 



What did you get done? 

Tidied Anabelle's garden

After lunch we went up to Anabelle. I'm ashamed to admit we haven't been up since Christmas and her Christmas tree was still up. The weekend following Christmas we were in Plymouth, I'm not sure what happened after that, but last weekend we were in Plymouth again and opportunity to go up, or my energy levels to go up seem to have passed us by.  

 Whilst clearing up Alexander's Christmas just involved placing cardboard packaging and wrapping paper in the bins, for Anabelle it feels like a major operation. Muddy, messy, dead and rotting flowers. It is no wonder I sometimes can't face it. Its hard, its always going to be hard. Sometimes I feel just numb there, going through the motions of making it tidy. Sometimes I feel guilty for feeling numb. It is a long while since I stood above her grave and sobbed. Mostly I try not to think too hard while I am there. 

I've written before how I find it especially hard taking Alexander there; sometimes whether it be because he gets impatient and bored in his buggy and starts creating, or because I can't shake the fear he'll join her in that grave, or because most of the time it is cold and raining and it becomes an even bigger ordeal in poor weather. Not being able to leave Alexander in the car because I can't really see him or hear him if he's in there, and that will make me anxious, but worried about how cold he will be getting in his buggy for too long. Sometimes it feels a rush and a pressure up there and I don't want that. I like to go and be calm and take as much time as I need. Most of the time the weather doesn't give us that luxury. The summer months are so short. 

Luckily today we left Alexander with Mum and Dad for the half hour we were up the cemetery, but even on our own the weather was not on our side, as usual, it was bitter. 

Today I left feeling awful because we hadn't taken fresh flowers, no excuse other than it was simply a trip to go and take the tree down, because I was feeling increasingly anxious knowing it was still up over a month after Christmas, so we didn't plan flowers. Today it was cold and icy rain, we didn't have sponges and warm water to wash the headstone down. Everything felt weathered today. I continue to leave there every time feeling like we need to make more effort, feeling guilty because the space between our visits continues to be a month or more. 

Today, after all the snow and rain everything was mostly sodden and ruined up there and lots needed to be thrown out. It now looks really bare without her pink Christmas tree, garden elephant and snowman but next weekend we'll go and buy her some new pretty garden decorations and things to replace what has been thrown out.   Next weekend we'll go again and refresh her garden for the winter. 

Oh these are not the jobs a parent should have to do. 



Who last called you on the phone? 

Jon

He called me about 12:30pm to see if I was going home after church to pick him up before going to Mum and Dad's for dinner. I missed his call and phoned him back at 12.50pm. I didn't go to pick him up, he came up himself on his bike! 







Thursday, 24 January 2013

#12 Makes Me Mad


What is making you mad?

Michael Gove 

I don't know a lot about politics. I don't pretend to understand it, but what a pillock this man is. 

Honestly, he makes my blood boil. Every time there is another teacher or education bashing nonsense article printed in the newspapers, he destroys the morale of the profession some more. This week, AS and A Level proposals, which do not have teacher or higher education support, not to mention the introduction of performance related pay  in the papers again this week. Oh and what about his 'flagship' now failing academies anyone? It is depressing.

You would expect the person in the position of Secretary of State for Education to uplift the people who work on the front line, as it were. Aspire to understand and experience the very real challenges in the classrooms across the country so that he can make decisions based on reality. Implement strategies, policies and changes that are relevant, not fashionable or unnecessarily provocative. You would expect some appreciation and acknowledgement of the hard work teacher's do, not just educating our pupils, but often going above and beyond to meet the emotional needs of the children in our care. 

But no, instead, at every turn he has belittled, devalued and even attacked the profession, and seems firmly in the camp of ignorant people who just think of a teacher as only working 9-3 and having long holidays. A camp of ignorant people who seem to think anyone can 'teach', a camp of people who continue to belittle our degrees and qualifications.  *Rolls eyes*   Why the resentment?

Do you remember how he urged parents into classrooms to break a threat of strike from the teaching unions? Would you urge people in off the street to 'cover' an operation if a surgeon went on strike for example? Or cover flying a plane if a pilot went on strike? Of course not. Gove completely undermines the skills of teacher's and refuses to acknowledge us as highly-trained  professionals.  We are not babysitters.

It is little surprise that parents and public have little respect and support for schools and teacher's when the man at the top is not on our side. Seeking to undermine us in every which way possible. 

We've put up with this man as Secretary of State for Education for over two and half years now; he's done so much more harm than good in his time in that position yet somehow kept his place in the cabinet in the last  autumn reshuffle. 

How is beyond me, with an entire profession alienated and an ever increasing cry of #GoveMUSTgo.  Follow @govewatch on Twitter for a general gist of the feeling. 

The last I heard Mr Gove you had an English degree, not a teaching degree. You do not have QTS. Maybe you should be sticking to what you know, and that is not education... What is even more frightening is that I keep hearing the rumour he is tipped to be the next Conservative party leader!

With men like him in charge in Westminster I'm thankful for devolution and the Severn bridge border. 


Wednesday, 23 January 2013

#11 Accessories


What is your favourite accessory? 

Anabelle's bracelet

I'm not a accessory heavy type girl. I don't wear lots of jewellery, or even own lots of jewellery infact. I'm minimalistic; my job and being Mummy isn't conducive to lots of jewellery. Mostly these days I just wear my wedding ring and stud earrings, but these are two pieces of jewellery missing that I wish I could wear more. 

My engagement ring, which is damaged and in long need of repair. I haven't worn it since last May and miss it daily, but in times of late maternity leave, recouping after returning to work and then Christmas, we can never seem to justify the cost. So it sits in the drawer. Who knows, maybe it will romantically reappear on my finger for Valentine's Day, or my birthday... hint hint Mr. Morgan! 

But then there is Anabelle's bracelet,  which is my favourite accessory, because when I wear it, it feels like I'm carrying a piece of her on me, her handprint. It was made by Pitter Patterns. I had found them while I was pregnant with her and thought it was a beautiful idea, not realising at the time how urgent idea would become. I don't think fingerprint/handprint jewellery was quite so popular then. After we knew she had grown wings we contacted them and they quickly sent us a pack out so we would be able to take special handprints for them to work with.  We asked them to take extra special care of them, explaining how precious the handprints were to us, and that we would only be able to take them once, so afterwards the lovely company sent her handprints on paper back to us so they could go in her memory book. Around her due date and beautiful bracelet arrived, her hand print on one side of the heart, her name on the other. 



I've stopped wearing daily in recent months for fear of losing it, especially as twice since the summer I thought I had lost it. I can't describe the sickening, frantic feeling, but I was beside myself and sobbed. 

The first time we were on holiday in Plymouth and had visited Looe for Xander's first trip to the beach in August. I took it off to change him and had obviously automatically put it inside the pouch of the beach bag, yet I hadn't remembered doing it. When I noticed it was not on my arm sometimes later I felt instantly frantic, panic swept over me as I thought it must've been lost in the sand. But it hadn't. It was ok. Found and worn again. 

The second time we were on holiday in Hartlepool in October.  We'd taken Xander swimming in the park's pool and obviously I'd taken it off to go in the water and not realised I'd not put it back on afterwards. After swimming, while we were having a drink in the bar, Xander had a series of horrendous nappies (and was the start of a week of illness for us). I thought I'd automatically taken it off to change him as I often do, and when we had finished changing him, I looked for it, all around the baby change toilet, and couldn't find it. I couldn't find it and again I was frantic. We emptied the change bag, the swim bag, we emptied the nappy bin for goodness sake! But we couldn't find it. 

It seemed lost forever. Back in the car to drive back to our caravan I sobbed and sobbed, while all Jon could do was hold me saying he didn't know how fix it. 'Only' a bracelet but it felt like I'd lost the piece of her I had left. It isn't 'only' a bracelet at all. 

I'm relieved to say on emptying the change bag again, through my tears in the caravan, her bracelet was found. Deep in the pocket where I carry my phone and purse. Somehow we'd missed it in our panic; and we had both looked. A miracle if you ask me. 

We made the decision that day, that I was taking it off more and more frequently changing Xander, that I was taking it off because Xander was pulling on it and playing with it and scared he would break it, and that it was probably best not to wear it frequently anymore. I'd already stopped wearing it every day, and now it was going to be left in the drawer even more, because one day, it really would be lost and I would be grief stricken all over again. So now I wear it only at the weekends, maybe only once a week. 

I miss it. My arm misses it. It knows it isn't there. As bizzare as it sounds frequently throughout the day I get a 'sensation' around my right wrist, I find myself rubbing it, as if my sub-conscious is searching for Anabelle. 



Its precious to me. I feel guilty for not wearing it, maybe we can find another solution, would a simple necklace with her handprint on be better and tucked away near my heart? But anyway, for now, I hope one day, when the nappy changes have finished and there is less need to take it off, that I can wear it daily again. 




January's Favourite


Today I'm reminiscing to my favourite photo of the day, taken last January 23rd, for my Picturing Twenty Twelve venture. It was the first time I took Xander swimming! Look at my cute, cheeky boy! Aged 3 months. 

23rd January 2012 

Tuesday, 22 January 2013

Picks of the Week Three

I've been completely hopeless with sharing my 'Picks of the Week' as a promised to do at the end of my Picturing Twenty Twelve venture. Three Sunday's of 2013 have passed and not once have I yet done the promised picture blog. My brother of all people (who I didn't realise took much notice of my blog!) reminded me I hadn't when we were staying there at the weekend!  On the way home on Sunday, from visiting him in Plymouth, I resolved to do a quick picture post before we went to bed, but then obviously Xander was very poorly and picture posting was the least of my concerns. 

I don't usually do this; but I'm going to put up some posts in retrospect. I'll put the week gone by up today and the previous two weeks backdated. (Week 1 and Week 2). I resolve to do them weekly from now on! If you enjoy looking at my photos, feel free to follow me on instagram, I'm cazzyem there and I love looking at other people's pictures too! (Alternatively the follow button is in the right hand column to the side of my blog.) 

So here we are my Picks of the Week 14th - 20th January 2013
 (and yes I do mean Picks - we're going for a play on words!) 

Cuddles and Snuggles

Scuttlebug playtime!

A special moment going into the jar.

Xander and Belle <3

Sledging in the snow..

.... although Xander isn't too impressed by snow!



Post-Mortem

On Sunday, the independent published this article, exploring why the majority of bereaved parents refuse a post-mortem for their baby following their stillbirth or neonatal death. Until now sketchy information, complicated forms, inconsistent guidance and the scandals of the 1990s have been blamed for the lack of uptake in post-mortem consent. Apparently many parents go onto regret not consenting to a post-mortem and a lifetime of anguish with unanswered questions.

Sands and pathologists seek to change that with a new post-mortem consent package released yesterday, hoping that a simpler process will encourage more bereaved parents to give their consent or at least have a better informed decision whether they choose to have one or not. They challenge that along with hoping to find the cause of the babies death, that more post-mortem's could provide valuable information to researchers and reduce the numbers of future deaths. 

We did not consent to a post-mortem for Anabelle and neither of us regret that decision. 

I remember being told we would be offered one but that it couldn't promise finding a cause for her death, and that in most cases a cause was not found. Our gut instinct, before being told anything else was 'she's not having one' and we told them that, before they had the chance to tell us anything else. We didn't give them the opportunity to tell us about forms or about the process because we instantly knew we would not be putting our daughter through that, and so forms and processes didn't matter. 

The Doctors and Midwives at the hospital didn't push the issue with us and respected our decision. I'm thankful for that. In our case sketchy information, complicated form and inconsistent guidance were not applicable because we didn't get that far with the conversation. We were just adamant as soon as it was mentioned. 

While I understand the importance of research and the positive impact it could have on the future, as far as we're concerned having a reason for her death wouldn't change the fact she was dead.  Neither of us could bear the thought of them cutting into her, or 'hurting' her when she was already so delicate. She was perfect and she didn't need to be disturbed; especially as they could not promise it was going to achieve anything.  

We knew there and then we could live with not knowing why she died far better if she remained unharmed; if we had consented to post-mortem and still nothing found we could not have lived with putting her and ourselves through that for nothing. Instead we agreed to swabs and bloods from her and me, we agreed to placenta screening. 

Those tests revealed nothing. She had no chromosomal abnormalities and I had no blood disorders. The only thing found was slight infection markers on the placenta, but not enough to have killed her, those infection markers were a result of the time it took for her to be born after she died. So we live with not knowing.

In the Independent's article Professor Peter Furness was quoted as commenting,  “The death of a child is almost the worst thing that can happen to a parent. I say ‘almost’, because surely it makes it even worse not to know why.”

I'm not sure I agree with him, he isn't speaking as a bereaved parent, only a Doctor. It doesn't make it any worse not knowing why, the thought of somebody hurting her precious little body with knives and instruments is far worse than not knowing why. For us at least. Not giving consent protected her from more harm, knowing wouldn't change the outcome. She would still be dead, we would still be grieving, would still be hurting. 

I think it is extremely brave for a parent to agree to a post-mortem for their child and I respect them hugely for the decision they made, as I expect respect in return for the decision we made.  Maybe we were not brave enough, but we do not regret our decision, we are not anguished because we don't know why she died, only anguished that she died at all.

Our beautiful girl was put to bed whole, undisturbed and exactly as she left me and I find some peace in that.


Monday, 21 January 2013

A Very Real Fear

This weekend has perfectly exemplified what parenting is like after bereavement, how we're parenting Alexander because of Anabelle. 

Alexander has been ill. I always worry when he is under the weather, like all parents I guess, except I'm always looking out for signs that he is about to die. Dramatic? Maybe.  My realest fear of them all? Yes. 

Friday night he had a sudden temperature of 40. We had been travelling to Plymouth and when we arrived he was hot and flushed and generally sweaty. We assumed we had put too many layers on him for the car ride and he had over-heated, but when he continued to spike high temperatures through Saturday, off his food and generally a bit miserable I was beginning to get concerned; was it teething or was it something more? 

Saturday night into Sunday was horrendous. We were up nearly all of the night with him, and at 4.00am when he had a temperature reading of 41, I phoned the out of hours service. A next to useless experience that didn't reassure me in the slightest. When a Dr finally phoned me back over an hour later I was told it sounded like a virus and to keep going for another 24 hours with overlapping calpol and ibuprofen. No suggestion of being seen, just a really disinterested Dr on the end of the phone. 

Sunday saw little improvement in his mood but his temperature remaining more or less low. Most were normal range, with the highest readings were in the 38-39 range instead of above. The medicines were doing their job on that front. Otherwise he had a day of eating little and not passing urine for 12 hours. We traveled home.

Then, just as we thought he was over the worst of whatever it was, he went mental as we were putting him to bed. I've never seen anything like it, he was so distressed and seemed in horrendous pain. He wouldn't let us touch him, or hold him. We laid him on our bed and he just writhed around, kicking and thrashing, arching his back, curling his knees up, rolling and screaming and screaming and screaming. Screaming so hard he kept holding his breath. The noise was indescribable, I can only liken it to a dying squealing pig. Very frightening to watch and listen to, feeling so helpless and not knowing what to do to help him. 

Eventually Jon dialled 999. We didn't know what else to do, after an accumulation of everything over the weekend and a baby behaving completely out of character. Xander, my beautiful almost always happy baby never cries without reason and had never been so distressed. Jon was put through to a nurse, who could hear Xander in the background, and after asking a few questions she sent an ambulance to get him. The longest wait ever. By the time they arrived and we were on our way he had been screaming, inconsolably for over an hour.  My mind was thinking all sorts, mostly that he was going to die. 

Typically on the way to the hospital, he'd stopped screaming, quietened down and finally was allowing me to cuddle him properly. Now I just felt like a neurotic mother who was over-reacting, and maybe we were. 

The Dr in A&E could find nothing obvious for his pain. But at least she and the paramedics were taking us seriously and trying to be reassuring. She too suggested a viral type infection for all his symptoms and although queried a ear or throat infection because they were red/blocked with wax she didn't really think it was definitive or the cause. They wanted me to wait it out another 24 hours and then to follow up with GP to see if there was a more obvious infection before giving antibiotics. Their biggest concern was the lack of wet nappies throughout the day, so although he had weed over himself (finally) in a service station on the way home, she wanted him to wee again before she discharged us. A perking up boy and a slightly damp nappy at 1.30am meant we could bring him home. 

Home and bed at 2am, feeling emotionally drained and maybe slightly silly. 

Today, his temperature has remained normal but adding to the continuing list a rash came up all over his torso, groin, neck, ears, hairline, scalp and back. Another phonecall to the GP and a visit later and we're still non-the-wiser with a definitive diagnosis. His glands are up, he looks weary, and he now has a rash. At least the GP had an explanation for his pain and outburst last night though. She explained that we have similar glands in our stomachs that we do in our throats, and if our throat glands are up it is likely his stomach glands are swollen to and it is entirely possible this was causing him pain. 

He has a virus, a nasty virus. What a useless diagnosis virus is... we just have to ride it out until he is well. 

And there is my fear. Viruses can kill children. 

I know I'm a woman obsessed about the possibility Alexander could die. It crosses my mind every single day, but when he is ill those thoughts are magnified and last night I was really scared, so was Jon. Sometimes I struggle to trust my own instincts and that links back to the night Anabelle died. She died after I made the decision to not go to the hospital until the morning. I know she might've died anyway, even if I'd gone in the night, but she might've been saved too. I made the wrong decision to wait until the morning. Sometimes, even now two and a half years later it feels like my fault.

I vowed to never do that again. I know that last night Alexander was ok in the end, but despite feeling slightly silly we made the right decision. Unsure of ourselves we sought out medical people to help us as quickly as possible, instead of the worst happening before we could stop it.  I hope last night is the first and last time we deem him unwell enough for an ambulance. 

We are probably quickly gaining a reputation for being somewhat neurotic parents. Winding myself up and wanting to take him to the Doctors for each little thing, having him checked and being reassured he is ok.

But you know, I would rather be known as the neurotic mother, than miss something and lose another of my babies. I would rather be on top of every little thing, so it can't turn into a big thing, or the worst thing and another coffin. Sometimes I feel like a crazy person when it comes to Xander, maybe I am! 

I'm irrational and rational all at the same time. Anabelle's death continues to colour every aspect of our lives and influences the decisions we make for Alexander all of the time. 

I hope tomorrow is a quieter day. 
Wednesday, 16 January 2013

Belle and Xander

My babies <3


Tuesday, 15 January 2013

#10: Smile


What made you smile today? 

Xander and Belle 

Today, while we were cuddled on the sofa, Xander looked up to where his sisters photographs are above the television, intently looking. I said are you looking at Belle? Shall we give her a wave? I said. So he did, waved in the general direction of his sister's photo.

So I took him closer. Stood up with him so he could look at her at eye level. I told him who she was, as I've done before. He waved again and we blew kisses and then I said can you say Belle? I repeated her name a few times, and he started trying to say her name too. 

"Buh" he tried and tried again. 

He didn't really know he was attempting his sisters name I guess, but it was a beautiful moment, him interacting with his sister in his way, in a way. I often wonder how he will know her at all, but there are little moments like this that are warming. He will know her. I'm going to start getting her photograph down from the mantelpiece more often now, let him hold it, explore it. 

He is getting really good at 'B' sounding words now.  He can say Boo and totally gets the game of Peekaboo while shrieking with laughter, he tries to say Bye, usually to his nursery keyworker on a Friday and has tried ball too. And now, he has tried Belle. Of course there isn't a huge amount of distinction between the words and their sounds presently, but boo and bye are attempted in context, and now ball and Belle are added to his copy and imitation list.  

I wonder if now we can really begin to teach him about his sister, now maybe he can learn 'her' and her name. I wonder if one day soon he'll be able to look at Belle's picture when we ask him where she is like he looks at us when we ask him where Mummy and Daddy are. Or is that confusing? I guess we'll have to try being specific about words, where is her photo instead of where is Belle. I suppose Belle can be in a photo, as well as in heaven, as well as in her garden can't she? Can we teach him she remains around us and in us?   How do you teach death to a child who's family is so profoundly affected by it on a daily basis? 'Messing' him up is one of my greatest worries. How do other angel families explain to siblings about their angel babies? Especially to those who came afterwards? 

Our approach so far has been to try and include her as organically as we can, including him in her, her in him when we can. We've allowed him to explore the flowers we take up to her, allowed him to play with one special flower and when he drops it on her garden its where it stays, as if he has given it to her. He had a go at putting a blue star on her Christmas tree from him, at least he copied me putting things on the tree by holding his arm out towards the tree while holding the star! We bought a Belle a bell for Christmas, and now he plays with that, a symbol I suppose of his sister. And now looking at photographs and learning to say her name, which he would've done if she was here. 

I guess 'natural' for our family will evolve as he grows and we grow, always carrying Belle there in the midst of us and somehow finding that balance. And I guess our 'natural' will be different from other peoples natural.  Natural in a very unnatural situation compared to most families. 

But for today, the little interaction between Xander and his big sister was beautiful and heartwarming and made me smile. Love my babies. Love my beautiful, gentle and genuinely loving little boy; a glimpse of his sister in him I bet! 



#8 #9: Food

The next two questions on the list are food related, quite random really, and don't really require much thought or discussion so I thought I would group them together! 

What is the last "good" thing you ate?

Define "good" 

Good healthy? An apple as a snack yesterday. 

Good hearty? Home made lasagne for our tea yesterday. Xander and I will be eating the left-overs for our dinner today! Lovely winter warmer. 

Good naughty? Sticky toffee pudding and ice-cream, also yesterday! Sooo yummy! 


What is your current favourite snack? 

McDonald's Chips 

Oh I know it is naughty, and I have zero self-discipline when I'm hungry and we're on the move. It too easy to find the nearest drive-through option and order a happy meal snack to keep me going. Salty McDonald's chips just taste too good! 


Now your answers on a postcard please! 

Monday, 14 January 2013

Rainbow Baby Things

25 weeks pregnant with Anabelle and modelling 'her' blanket.



Are any other rainbow mums obsessed with rainbow baby clothes and things? 

I am. Throughout his life I've been drawn to rainbow clothes to put on him. Tonight I've bought him these rainbow sleepsuits, at Christmas I bought him these rainbow pyjamas.  Most of the time it is like I can't help myself, if I see something meaningful and beautiful, he has to have it! 

I've always loved rainbow colours before it had the meaning it does now. When we were expecting Anabelle I asked Mum to make her a rainbow blanket for the pram; quite ironic now really I suppose.  The blanket obviously became Xander's and represents everything that he is. 




17+5 weeks pregnant, we're having a boy!
When I was pregnant with Xander I was instantly attracted to maternity clothes with a bit of rainbow in them; one top in particular that I wore the day we went to find out if he was a boy or girl. 

When  we were planning his 'going home' outfit I knew he had to come home dressed in rainbow colours. I bought a set of long sleeve vests in Mothercare, especially because they had two rainbow stripe vests in the pack. I asked Mum to knit him a rainbow jumper. 

From the word go he has had to have something rainbow to wear. In every size since he's had multicoloured or rainbow clothes. I also love dressing him in bright colours, like a rainbow and they've always suited him, even when he was tiny! 

Even his birthday, even though Waybuloo themed had to have a splash of rainbow in there. How could it not when it was our rainbow baby turning one?! So his birthday cake was rainbow sponged, we did rainbow themed food. 

Ready to come home!


Even Christmas and choosing some of his presents; I wanted his play tent to be red, green, yellow and blue, a sort of rainbow coloured... any other colour combinations were not going to do and I searched for the one I wanted. The same with his playballs. Even down to buying reams of rainbow wrapping paper on his first Christmas that we've been using for him since. A bit of a freak? Maybe. 

I wonder if this connection with rainbow things will last forever. Or at least throughout his childhood? Maybe until he starts choosing things for himself? 

I can't see it stopping any time soon when I'm drawn to rainbow things for him! Beautiful boy, my rainbow baby. 


Wrapped in the rainbow blanket and visiting his sister for the first time.



#7: People


Can people change? 

Yes

Of course they can. Whether it be through growing up and maturing, changing attitudes or circumstances, significant life events; happy, tragic or traumatic. Our lives continues to move along and our experience with it. Some people change for the better, some worse. 

I've written twice before, sometime ago now, how I felt Anabelle's death had changed me; and it has, parts for better, parts for worse. A New Me - November 2010Changed - February 2011. Those posts may be old but for the most part they are still absolutely true. 

Back then I wrote how I suffered with anxiety and worry, that I felt pessimistic, old before my time, that I wasn't so much of a people pleaser anymore, more selfish I suppose, my priorities were different, that I felt out of control, I struggled to concentrate, that I was so angry all of the time.  

Things have moved on from those posts, in that I don't feel this way so constantly. Some sort of new 'normality' has resumed, but there are waves, when I feel low, when I feel exactly how I described in those posts. 

Previous to Anabelle's death I had still been a worrier, but nowhere on the scale I've been since. In the early days I used to get quite beside myself with Jon was out at work and hadn't let me know he had got there safely, or didn't respond to a text within 10 minutes, or didn't answer his phone for the umpteenth time in a row, I would convince myself he was dead. For most of the time now I do 'have a grip' on those thoughts now, but sometimes when going through a particularly anxious period those morbid thoughts take grip on me again. These days I convince myself he's had a motorbike accident, so I guess that is improvement; I don't jump straight to death, not all the time anyway. I'm anxious in the morning if I wake before Alexander. I don't like waking before him, I like him to wake me. If I wake before him one of my first thoughts is 'I hope the breathing monitor hasn't stopped working, I hope he's still alive' and I work myself up about walking into his room incase I find him dead. Yes, my 15 month old son still has his breathing montior and I've no intention of removing it for a long long time to come. It is my reassurance. 

I'm still quite pessimisitc much of the time you see, in a 'well it is bound to happen to us because that is what our lives are like' kind of way. I'm not surprised if something sad or terrible happens to us, I'm not surprised when something happens that sends me off in a spiral wobble. 

I'm definitely more selfish now, a bitter streak runs through me. Definitely less of a people pleaser. I don't run after people anymore. My feelings and my little family come first. If I don't feel up to doing something, we don't do it until I am feeling up to it. I've learnt to practice self-preservation in many ways, different priorities and situation avoidance has made me less and less a people pleaser. 

The out of control feeling is less constant but still there. Often the world feels out of my control now; things happen around me that I cannot change, cannot influence. I suppose it was always like that, but normal life things didn't hurt me quite so much before. In the second half of 2012 I had lots of moments where everything felt like it was spiraling out of control again, so full of anger, not feeling quite together. So far this year I'm trying to pull it together again; focussing once again on my blog, joining a rainbow babies mother and tots group next month and when I pluck up the courage; counselling again. 

So I've undoubtedly changed. Young and carefree taken away from me before my youth was really done.  Do I still feel old before my time? Lots of the time; but equally now the other part of the time I feel my age I suppose. When the weight of grief is lifted by the joy of my son. Alexander who, more than anything or anyone else, has allowed some of my raw edges to heal and soften, made me less sharp all around I imagine. Even on my darkest days now, he gives me a reason to smile. 

There we are; another change. Becoming his mother too changed me again, for the better this time. 

So what do you think? Do people change or were they always really like that deep down somewhere? Has there been a point in your life where you feel you undoubtedly changed? 


Sunday, 13 January 2013

Picks of the Week Two


Picks of the Week: 7th - 13th January 2013 

Bathtime fun! Splash splash splash! 



Exploring the iPad


Baby iPad art!


Looking so grown up in the trolley!

Writing!


(Posted in retrospect, 22nd January 2013)
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Friday, 11 January 2013

So Why a Facebook Page?

As I said in my previous post, blogging started as my outlet, my space to organise my thought, process the turmoil we were going through. It helped me to connect to other angel parents at varying stages of their own grief. I also connected to lots of other bloggers, became involved in 'blog hops' and wrote guest pieces for other people. After a while I wanted my blog to become a platform that raised awareness, provided support, broke a taboo. I've always tried to be so honest with my feelings, even when, and probably especially when they are their most raw. 

These days I'm asked fairly regularly if somebody can connect a newly bereaved parent to my blog. Of course, I always say 'of course'. I hope somehow this blog has been a 'friend' in times of distress for other people.   I hope it has helped others to talk about their grief, if they want to. I hope it has helped those surrounding the bereaved to feel more comfortable and know how to reach their friends through times of need. 

My blog has over 3000 hits a month. I don't know if that is a large number in comparison to other blogs, but it seems fairly sizable to me. Each individual post can be read anywhere from 80-350 time, mostly averaging around 150. But people rarely comment, not directly on the blog at least. I know many of my readers link through my personal facebook page and leave comments there, but I also strangers reach my blog regularly too as I have readers popping in from around the globe according to the map on my stats page!

 It isn't always made easy to comment on blogs, it can feel a bit of a faff with the 'prove you are not a robot' filter code to fill in.  I've been guilty of it too, reading, feeling engaged with the post but not bothering to comment. The problem is if you turn the 'robot' filter code off you are often left with inappropriate spam comments, which when I'm feeling particularly sensitive, upsets me. 

I've been thinking about this for a while, so the last few days, in an attempt to encourage more discussion about my blog posts and another avenue of support for angel parents, I've started to link to its very own Facebook page. Even if its just to say 'I'm so glad I'm not the only one who has felt like that.'  I'm not entirely sure how it will go, it might not work, but we'll give it go. 

So far I've been reading through and linking some of the posts that I wrote in the few months after I started blogging in 2010. It strange to be reading so far back, its all so raw then. We really have come a long way. There is still so often pain now, but the bewilderment of those early days just cannot compare to how we function now. I wouldn't have believed it then, that the jagged edge would start to chip off a little bit to soften.

I hope people who read this blog, via Mumsnet Bloggers, or random google searches will especially feel able to come over and follow it there. I hope other angel parents will find it easier to explore their own thoughts through what I post here, and link over there. Mostly, I just want to get people talking. Continue raising awareness, continue breaking the taboo surrounding bereaved parents, stillbirth and infant death. 

So here we go, here it is: After Anabelle's Facebook page. Get liking! 

#6: Possessions


What possession could you not live without?

My virtual world. 

Ok, so not so much a possession, but area of my life all the same. Sounds a bit 'sad' doesn't it I guess. Or does it?  Before Anabelle died I dabbled fairly frequently on Facebook and had joined an antenatal thread on Mumsnet, but my online usage was far far smaller than it is now.  After she died I barely existed outside of the internet. I frequented the Sands forum in particular for long hours each day, among a few other places. I completely immersed myself in the virtual world.  I started blogging.

It was where I felt safe. Safer than in the 'real' world at least. It was easier there. 

Today, of course I've moved on a lot from those early frightened days. I'm immersed in the real world now, but I still spend countless hours a week on the internet. My virtual world still has a huge impact on my daily life. I often think I need to cut down on my screen time, to spend less time on my laptop or the iPad. I don't think online usage has been helped by internet coming everywhere with me now on my iPhone. It is something I'm trying to make a far more conscience effort with this year; the iPhone not being an extension of my arm! 

However my virtual world is going to remain a big part of my life. 

The connections I've made with various people in various places are real. Namely my husband! Yes Jon and I met on Faceparty (the social networking site before Facebook...) seven years ago now, pen-palled for nine months before meeting in person and as they say, the rest is history. More recently some of the people I've met in my virtual worlds I've met in real life and now consider them real life friends. 

Blogging started as my outlet, my space to organise my thoughts, process the turmoil we were going through.  It helped me to connect with other angel parents at varying stages of their own journey. After a while I wanted it to be a blog that raised awareness; broke a taboo, that is why I've always tried to be so honest with my feelings, even when, and probably especially when they are at their most raw. Over time people started to tell me that my blog helped them. Fairly regularly I'm asked if somebody can send my link to parent they know who has been recently bereaved. I always say of course.

I've been thinking about it for a while, and a few days ago I decided to start setting up a Facebook page for my blog. There will be more information to follow about this in my next post!


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Caz
After Anabelle - Raising Rainbows. I'm Caz, Mummy to beautiful angel Belle and my wonderful rainbow boys, Xander, Zachy and Luc. Wife to Jon. Twitter @cazem Instagram @cazzyem
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