Tag Archives: Baby loss

birthday in grief

Then She Was Seven

Today is the day my life changed.

Today is the day I have learnt to celebrate a child’s birthday without the child.

This is something, I still cannot get my brain around. I had a baby on this day, I had emergency surgery on this day, my body knows that I had a baby, but my brain can’t seem to adjust that the baby who was meant to live a full and healthy life died.

I have a seven-year-old, but she didn’t grow she didn’t leave the hospital. She is forever 5 weeks, but I still should have had a seven-year-old. How can anyone get used to that?

Time has stopped, raced forward and slowed down all at once.

As we entered this year, it has felt different, I have felt pissed at the whole situation, pissed that I am not the person I was before, pissed at my self for feeling like I hate my daughter. Pissed that no matter what I do, I will always be a mother to a dead child. It felt like I woke up after seven years and everything is different.

I can ignore her, ignore the situation, I could stop talking about her; but none of it would change the outcome. I would still be a mum to a dead child.

When I decided to walk away from her, from everything about her to turn and run as far away as I could, I hate being a bereaved mum and I feel trapped.

I wished that I had never met her.

This year I felt beaten by the whole thought that this is our life. I was fully expecting to be ‘better’. This is something I am now learning to deal with.

I was reminded that no matter what I do she will always be our daughter. So rather than run or hate her I need to find a sense of being happy within the situation which has been given – I certainly didn’t choose any of this. I want to make sense of her death; this year I have been given the confidence to push the support group I set up three years ago, it is bloody hard work – but rather than hating her for making us bereaved parents, blaming her for ruining our lives; I am going to learn to love her again, to build a legacy for her and her siblings because they are a massive part of the service we are building and trying to achieve.

I really have had such a tug of war (love) between the life I had imagined and the life we have, I am grateful to the life we have, but I also would have preferred not to have a lifetime of pain – as would many other families who have lost their child. T

I don’t quite know how it is seven years.

This year she would have been doing her year two SATS tests, it is another moment where there will be a number missing in the statistics, a missing child at the table, but there will be no absence reported.

The tooth fairy will never visit her,

I will never have her first tooth stashed away not knowing what on earth I am going to do with it.

She will never need a magic kiss for the knee she grazed running too far ahead.

Or chose a story to read in bed

I will never know the thing she would have liked, or the hobbies she would have chosen.

Would she have been a majorette like the rest of her siblings or wanted to do something completely different.

There will always be a seven-year-old shaped hole an unoccupied space, but in the secrecy that nobody will ever notice that empty chair, or missing friend from the classroom.

Or a hand that isn’t being held

And still the biggest thing that I wish I had known is the colour of her eyes.

I hate not knowing such an important part of someone’s facial feature.

I have a seven-year-old, I would love to have gotten to know her.

little daffodils

Together For Yellow – Frankie

Frankie’s Story



Our story. End-diastolic flow reversal.

We had our beautiful perfect 1st son Frankie born 5th March 2011. He was born at 29+5 weeks relatively ok gestation for most babies whilst still prem survival rate is a lot higher at this gestation, however due to preeclampsia causing the flow reversal in my placenta arteries this meant Frankie was more like a 25-26 weeker which dramatically lowered his survival rates from 80% down to 40%.

He was born via emergency c-section screaming into the world perfect in every single way had all his fingers toes and jet black hair. Frankie was vented straight away so they could assist his breathing even though born breathing on his own, I had no doubts my baby would survive he was perfect to look at just his lungs under developed.

Day 1-2 he was fine perfect stable. Day 3 I was woken up about 5am as he had had a bleed on his lung and needed transfusion and platelets to stem the bleed he the started with jaundice. He was hooked up to every power source available for his lights Ivs etc. Day 4 his lungs were failing they tried the occilating ventilator if you haven’t seen this it shakes the baby’s body quiet violently to free the fluid surrounding lungs so isn’t a nice sight to see, he was very poorly at this point.

The consultant took me into a room alone with a neo nurse as all my family had left and was explaining how Frankie was very poorly again I didn’t for one second think my beautiful baby would die. Until the consultant said to me your son is the most critically ill baby we have on this unit I looked him in the eye and asked those dreaded words will he survive the night the response absolutely floored me NO.

I walked out of that room rang my partner and screamed he needed to get back to the hospital then rang my mum I was still quiet calm at this point, as I walked back to the ward my midwife took one look at me and I screamed my baby is going to die I sobbed inconsolably at this point how could my perfect baby of 4 days old die this isn’t meant to happen that’s not what happens you have a baby and bring them home.

The drs gave him some nitrous oxide in his vent stating it won’t make a difference but they will of tried everything. With in minutes his oxygen levels went from 70’s up to 90’s and they actually had to turn his vent down a bit I was actually believing my baby would live.

Day 5 my 25th birthday – a day that changed me for the rest of my life. Frankie survived the night was still very unstable I don’t remember much of this day it’s still very hazy approximately 5/6pm Frankie started to dip his oxygen levels and I sat and watched I begged and pleaded for him to keep fighting his tiny body going through Hell his machine was beeping left right and centre drs and nurses stood all around the room.

The dr come to me and said there was nothing else they can do my baby was going to die I asked to hold my baby the first and last time I held him he took his last breath in my arms I will never forget the sound of the air leaving his body how light he was how perfect he was yet he had died how is life this cruel. I went home and felt numb I had no words to speak just sheer heartache like nothing you have ever felt.

We planned his funeral and I picked everything I wanted for him the wicker basket I wanted him in the teddies pics I wanted with him too. The day before I his funeral I visited him I picked him up out the basket kissed him goodnight for the last time and promised him il never forget how strong he was and how proud he made me.

After his funeral I found myself lost alone angry hurt and nobody understood how it felt. I sort help from friends online and I got help from people I didn’t know cared so much I also realised the true meaning of friendship how friends stood by me if I replied to texts or not friends who to this day never ever forget and ALWAYS mention my frankies name these friends are worth their weight in gold true diamonds.

I do believe things happen for a reason whilst I’m yet to find the reason as to why Frankie died it did however bring me to a friendship I probably wouldn’t of had such a strong bond with if sadly we didn’t have to share the same heartache in loosing our babies BUT I travelled miles to meet this friend and have remained friends since 2012 and probably grow old together.

Always remember our babies. Always say their names, and don’t think they are crazy or weird for celebrating their baby’s birthdays anniversary’s because until you have walked in the shoes of a bereaved parent then you won’t understand that our child still lived our child was still loved and our child had hope of a life. Well never forget our child we won’t ever stop mentioning our child names.

baby loss, grief

I’m Sorry, But My Heart Hurts Too.

This was first featured on Still Standing Magazine.

“I have five children; but I parent four. One of my children died.”

I can see the look that changes your face in an instant, you don’t realise you’re doing it. But I can see it, the twist of pain; the looks of discomfort as you’re unsure of how I am going to take this conversation.

You tell me you’re honoured about hearing of her, our little girl who didn’t make it, but in the same breath you tell me that is hurts your heart; and you often don’t know what to say. That by me telling you makes me instantly a different person. You look at me in a completely different way, your eyes look heavy I can hear that deep breath you thought was silent, because you fear that maybe I will share too much or maybe even infect you somehow.

Then I find myself saying sorry. Sorry for upsetting you, sorry for mentioning her, sorry for not keeping her a secret; sorry for having a daughter who died.

I’m sorry.

“I don’t understand these people who keep talking about IT, who feel the need to share their losses, why don’t they just get on with it- I did.” I remain quiet, because I fear that I am different, for not being over it as quickly as the next person; I question am I even coping the way I am meant to?

Am I ill for talking about HER? Should I be moved on? How am I supposed to just forget her?

I’m sorry for bringing her up again. I’m sorry for grieving too long. I’m sorry I am not grieving the right way. I am sorry for talking about my daughter who died.

I’m sorry.

I watch as the children move from one year to another, school holidays, new uniforms, new school year. Another year where we are minus one; another year of never knowing who she could have been. No friends, no clubs, no teams. No school reports.

I’m sorry that I am glad my living children are growing up and that I don’t want them to stop growing. I’m sorry that just sometimes I feel sad that one of our children isn’t moving up.

I am sorry.

As I hear time and time again the wonderful work the health care professionals do to provide care. I am sorry that not all are the same. I am sorry it feels me with a deep and heavy sadness when places get praise. I just wish our baby could have been one of them too. I wish her heart hadn’t stopped. I wish everything was different. I wish I could have done more to save her.

I could have left her in the past.

I could have felt the shame of having a baby who died.

I could have given up.

I’m sorry my daughter died.

My heart hurts too…

little daffodils

Together For Yellow – Molly and Grace

Molly and Grace’s Stories.
Massive Perivillous Fibrinoid Deposition (MPFD).

We found out we were pregnant with Molly in mid-December 2010. We were delighted but couldn’t help worry as we had miscarried just 2 months earlier. A scan at 6 weeks showed a little bean, with a flickering heartbeat. We were in love! I spent the next few weeks mostly being sick.
The ‘morning’ sickness continued morning, noon and night. At 16 weeks I had a small bleed. A trip to the maternity unit showed I had a cervical erosion which we were told was nothing to worry about.

We also had the chance to hear baby’s heartbeat through the doppler. In the next few weeks, I started feeling movement. Just before 20 weeks, I had another bleed. Again a trip to the hospital confirmed the erosion was the cause of the bleeding and we had another opportunity to hear the heartbeat.
At 21 weeks, we headed to the hospital for our routine scan. We were shown into the usual room but this time the sonographer did not turn the screen round. All was quiet and I knew something was wrong. She took my hand and said ‘I’m sorry but there is no heartbeat’. I will never forget that
moment. She went to get someone to come and confirm that our baby had died. The next couple of days are a blur. I was given tablets to take and told to come back in 2 days to be induced.
We arrived back at the hospital a couple of days later and were given a side room in the labour ward.
All around us we could hear the cries of healthy newborns. I was given medication to induce labour and the contractions started soon after. That whole day is a blur to me.
Molly was born at 21 weeks on 14th April 2011 at 9:04pm after 11 hours of labour. I didn’t look straight away. The midwife took her away and brought her back to us all clean and wrapped up. I was scared to hold her, scared to touch her. But she was perfection in miniature and so beautiful.


We held her and spoke to her. I was scared to unwrap her and look at her properly. We spent a few hours with her then the midwife took her away. I was in complete shock. I don’t think I would have survived had it not been for my husband. Leaving the hospital the next day, without Molly, was one
of the hardest and most horrendous things I have ever done. Walking away that day was the worst part of the whole experience. We buried our beautiful girl 2 weeks later on a warm, sunny morning.
I have regrets…
…that I didn’t look at her feet, that I didn’t hold her for long enough… I just didn’t know what we were allowed to do and I didn’t have the presence of mind to ask. I look at her footprints and I wish I had looked at her tiny, perfect feet.
July brought results of the tests carried out on my placenta. Molly had been perfect, my body let her down. Placental results showed that she had died due to a very rare condition called Massive Perivillous Fibrinoid Deposition (MPFD). This basically meant that fibroids and clots had formed on
the placenta, gradually taking over until it was no longer fit for purpose and unable to support a growing baby. Consultants put in place a plan for the future: daily aspirin tablets and daily self-administered heparin injections. It was hoped that this combination would stop clots forming and
keep the blood moving through the cord.


We went on to have another early miscarriage at the end of July 2011 and then a pregnancy test on New Year’s Eve confirmed that we were pregnant for the fourth time and, with a treatment plan in place, we were hoping that finally this pregnancy would give us our take home baby. At night, I was
taking my aspirin, folic acid and vitamin D. Also I began injecting the heparin. After a small bleed, we were scanned at 10 weeks for reassurance and all was well. The 12 week scan came around quickly and we were relieved to see our baby waving at us and measuring perfectly for dates.


We were delighted but still very apprehensive. Our next scan was booked in for 15 weeks. At this point, the baby was measuring slightly behind but the sonographer wasn’t worried and said it was normal to be out by a couple of days. We went round to see the consultant to make sure all was
going well with the medication. He offered extra scans for reassurance and we went 2 days later for the first of those scans. A registrar scanned us on a very old machine. She was concerned about the fluid level but, after looking at our scan photos from the hospital she said they were the same and
not to worry about it if the hospital hadn’t mentioned it.
A few days later, I had a major bleed. We went to the hospital. A doppler let us hear a nice strong heartbeat and put my mind at rest a bit. A scan was also arranged for the coming Wednesday when I would be 16 weeks. This was when our world started to crumble all over again.
The scan on Wednesday showed that there was no amniotic fluid and the blood flow through the cord (EDF) was absent. We were devastated and could not believe that it was happening all over again. The doctors advised us that our baby would die within days and that they would scan us
weekly until the inevitable happened. We met with our consultant the following day. He thought it was the same thing again and told us that this was the first time the hospital had dealt with anyone with MPFD. In fact, they hadn’t heard of it before and the treatment we were on had been their best guess.
The 17 week scan showed baby still had a strong heartbeat although growth had majorly slowed down. However, some small pockets of fluid had appeared and EDF was present. This gave us a tiny sliver of hope and the doctors doubled the amount of clexane I was taking. I also began taking
steroids to see if it would help halt the damage to the placenta. It looked like the condition which had taken Molly from us had returned with a vengeance.
By 18 weeks, my bump was popping out and growing well, I was still being sick. The scan showed
our little star was continuing to fight hard. At 20 weeks our little one was still fighting. EDF was present but growth was minimal. We spent the weekend on the coast, remembering Molly on her first birthday and anniversary. We had such a horrendous sense of déjà vu as it was all happening at the same time of year again.
At 21 weeks the heartbeat was still there but the EDF was now absent again. I was advised to stop all the medication.
I woke up a few days later on the 2nd of May and knew our little one was gone. I had movement the night before but I knew when I woke up that something was wrong. A scan later that morning confirmed our little one had died. I was booked in for induction 2 days later.

4th May 2012, 22 weeks pregnant: after 6 hours of labour, Grace came silently into the world at 3:15pm in the same room where Molly had been born. She weighed exactly the same as Molly, perfection in miniature. She looked so serious and deep in thought. She would have been our little
thinker. I wasn’t so scared this time. I held her. I looked at every part of her, including her tiny feet. I didn’t want the same regrets as I had the last time. We cuddled her for hours. The next day, we said our goodbyes. It took us a long time to walk away. Once again, I found this the hardest thing to do. There is nothing worse than walking away and leaving your child behind. It is the most horrendous thing I have ever experienced.


Tests on the placenta confirmed that, like Molly, the placenta was again attacked due to the condition Massive Perivillous Fibrinoid Deposition. They were still not 100% certain of what causes the MPFD to happen, possibly an alloimmune response, possibly an as-yet undiagnosed
thrombophilia issue. They did not commit to either school of thought. What they did say was that the condition was aggressive and recurrent and they were struggling to find anyone else with as severe a condition. We were a unique oddity.

So… they agreed to the treatment plan we had researched that had been successful for people with a similar condition as long as we went into it with eyes open and accept that we were now sailing in unchartered waters with no guarantees. The treatment would include aspirin, high dose folic acid, heparin, steroids and Intralipids.

I became pregnant for the 5th time in Autumn 2012. All was going well. Various early scans had shown a little bean, with a heartbeat, developing well. A scan at 11 weeks showed the heartbeat had stopped. This had been so completely unexpected and I felt completely numb. If anything, I expected the bad news to come as we approached 20 weeks and beyond. I had been taking all my myriad of medications, focusing on getting to that point and then taking it from there. I had injected myself with heparin over 100 times. I had taken over 200 steroid tablets as well as the daily aspirin tablets. I had two intralipid infusions. Folic acid tablets, vitamin D tablets, pregnancy multi-vitamins. All to no avail.
Placental tests came back to show that MPFD had returned with a vengeance despite the extensive treatment plan. Even if the pregnancy had continued beyond 11 weeks, the placenta would never have lasted. We were told that I would highly likely never carry a living child to term and we should start to look into other ways of having a family.


Following our 5th loss, our consultant mentioned surrogacy to us. He felt it would be a good idea for us as our babies were perfectly healthy, it was just my body that was the issue. My sister offered to be our surrogate and kept offering until we decided we would give it a go. We used our own embryos
and my sister was the oven! We became parents to a healthy baby girl in Spring 2014 and we feel so blessed.

MPFD did not make an appearance at all. Surrogacy was such a positive experience for us.
My sister was amazing – she would phone us to come up when baby was moving around so that we could feel her moving. We did worry about how she would feel when baby arrived but the fact that the baby was biologically ours and not hers made that easier for her. We there in theatre when our little one arrived by c-section at 37 weeks. We all cried. My sister felt it was such a different experience to having her own. She said she loved her immediately but didn’t feel the rush of intense love she had experienced when her own daughter had been born. I think this was a relief for us both as we had both been worrying about it. Cara knows she grew in her auntie’s tummy because mine didn’t work. It’s just the way it is. What a fab auntie she has!
So MPFD is a condition I still research and blog about. It is so rare, it is important to me that others find some support. When I initially googled it, all that appeared was a bunch of medical papers that made no sense to me. I want others to be able to find a human face to this and also so have instant
access to research and treatment plans which I have collated along with another mum who has the same condition. I also volunteer with SANDS Lothians – a fantastic charity who were a light for us during very dark times.
Despite everything, we are blessed. Every day our little girl brings us such joy – we are so lucky to have her.


MPFD

You can read more about Massive Perivillous Fibrinoid Deposition here if you are interested:


http://lossthroughthelookingglass.blogspot.co.uk/2012/08/clara-massive-perivillous-fibrinoid.html

little daffodils

Together For Yellow – Alex

Alex’s Story

I’d like to share my little boy’s story.

I conceived my youngest, Alex when Teddy (my eldest) was still very young – there were only 16 months between them when Alex was born. Teddy was born 6 weeks early via emergency c-section but after careful consultation with midwives and a consultant, I chose to deliver Alex via VBAC. The whole way through my pregnancy with him I was terrified he’d be born prematurely too. I feel like I held my breath until we reached the 37-week mark. At 37 weeks and 4 days, I went into labour naturally.

All went well and I quickly made it to the magically 10cm dilated mark. At that point midwives were worried about baby’s heartbeat and called for a doctor. He wanted to try forceps but we rushed to theatre in case. Three attempts at a forceps delivery failed and an emergency c-section was performed.

By the time Alex was pulled out of me, my uterus had ruptured and Alex had been starved of oxygen for an unknown amount of time. But too long. He slipped into the world silent and still. The doctors managed to resuscitate him and rushed him away. He was the transferred to another hospital for cooling treatment to try to prevent secondary brain damage whilst the doctor worked hard to rectify the mess of my insides.

I joined my son that evening, having waited a day for a bed. Tests showed a complete lack of brain stem activity despite my desperate pleas and prayers. The first night of his life he crashed but doctors brought him back as I tried to rush my bruised and broken body down to the NICU. His body showed the trauma he’d been through and we signed a DNR to prevent further trauma. Life support machines kept my son alive for 3 days, but on his fourth day we made the heartbreaking decision to turn them off.

He never opened his eyes.

Never cried.

Never fed or needed a nappy change.

But he made such an imprint on my heart.

I’ll miss him forever.

little daffodils

Together For Yellow – HLHS – Danyl

Danyl’s Story

I found out I was pregnant with twins in April 2017. I was scanned a lot with it being a multiple pregnancy, but was actually signed off as low risk at 16/17 weeks pregnant. We had had growth scans, listened to their hearts and everything seemed healthy. Then at my 20 weeks scan they discovered twin 2 had a problem with his heart.

We were fast-tracked to be scanned at fetal medicine and cardiologists from other hospitals came too. They confirmed he had HLHS at this point. Meaning half his heart didn’t work properly, it was under developed (the left side that pumped oxygenated blood around the body).

From this point we were scanned every week and every week it was like they found another problem. We were advised to terminate because they were really concerned with me progressing with this pregnancy. After reading everything we decided we would go ahead with the pregnancy to give our twin 1, Dylan, the best chance at surviving. We would be monitored and obviously we had to Take our pregnancy day by day.

We had a plan for every situation should the babies have had to be delivered at different points. Towards the end of my pregnancy we had the plan of delivering the babies and then if all was well being transported to the hospice to receive end of life care for Danyl. We were heart broken that we were planning this but we knew the team very well by this point. Then at one of my last scans we were told Danyl was doing so well we may be able to take him home for a few weeks. At this point I asked again if surgery would be an option for us (even though I knew he would never be cured of his defects, surgery would have been palliative too) again we were told that they were very worried about our baby and he wasn’t even here yet.

So we went home to get our heads around the fact we may get to bring our baby home. It was at this point I let my mam and husband try and sort out things for the babies, I hadn’t allowed myself to buy them a single thing because we Genuinely didn’t know if anybody would survive. Anyway fast forward for their birth 12/10/2017 and they were both born and doing well. We were kept in for 5 days. It was so weird getting to know your babies and trying to be happy and grateful for them both arriving but signing DNR forms and knowing one would die.

It was really surreal. It was so scary bringing them both home. Looking at Danyl, he didn’t look poorly. He didn’t need any medical intervention etc and people were genuinely shocked when they saw him. Danyl was at home with us for a year and 10 days. Some days were a real struggle looking after 3 babies under 2 and 1 being seriously ill. We were prepped to go back to the hospice at any point and were told what changes to look for. Changes in feeding, nappy output, visually etc. None of these changes actually came and the day he died was actually just a normal day.

He had a routine check the day before and everything was his normal. Looking back I’m pleased I didn’t see a change. He didn’t look different, he didn’t need any of the drugs we were given etc. He just looked like he always did and he just fell asleep. We are now dealing with the ‘what happens next’ Oliver my eldest receives play therapy from the hospice and we are continuing with counselling etc.

 

 

HLHS – Hypoplastic Left Heart Syndrome is a birth defect, which affects normal blood flow through the heart. This is found during pregnancy when the left side of the heart is found not to be forming correctly.

little daffodils pregnancy and infant loss support service

Together For Yellow – Charity Awareness.

charity towards tomorrow logo

Pregnancy and Infant Loss Awareness Week

This week remembers and spreads awareness about the babies and children who have passed away. I have always been open and honest about my grief journey; my thoughts after Melody died. I don’t really need this single week to do so; however it gets people thinking, it gets people talking, it brings the taboo to the forefront of people’s minds. In the hope that one day the taboo will be a distant memory. We have a long way to go.

When we walked out of the hospital after Melody had died; it became apparent from very early on that the support as a whole for bereaved parents really is few and far between; even more so with Melody’s death. Leaflets, awareness, even charities concentrated on a few scenarios; which of course is amazing, the more awareness the more chances women and professionals will be able to reduce the rate of death. But it can leave parents like us feel alone, pushed out and even more isolated.

Charity

From the first few days I took to online support; but knew I wanted to help more; there’s so much more I want to do. I decided that I would like to try and get a group together. It was something I felt was missing. I ended up contacting Mel Scott of Towards Tomorrow Together, a charity who supports families who have lost a baby through miscarriage, stillbirth, babies with poor prognosis in utero and they included us. So essentially all losses, nobody gets excluded.

Little Daffodils was born; although it was originally named Melody’s Voices I came away from a prestigious baby loss event in 2016 – The Butterfly Awards and knew that giving support and making a difference was so much more than doing something in her name, and in her memory. Daffodils are the flowers for us who represent Melody but they give so much colour, but only live for a short time. I really want to make a difference; sometimes it can feel like I am hitting a brick wall; others when people message for support and then say thank you, I know something must be doing.

Towards Tomorrow Together provide Butterfly Boxes to hospitals to help families create memories in the short time after a baby or child has died. Unfortunately it isn’t something we personally received (back to the lack of support), but they do bring comfort to families who have to leave without their beloved children.

Education

Through the death of her own baby, Mel has worked tirelessly to raise awareness, put together educational sessions – I have even spoken at one; and in the midst of putting one together myself, with the help of Mel.

It is difficult to get across to professionals the real thoughts and emotions behind losing a baby; through textbooks there should be a time limit. There isn’t.

This Somerset run charity works a lot from fundraising, this year Little Daffodils as a team has made £1900 with various fundraisers.

There is so much more to do within the baby loss community, especially for infant loss awareness; it will take more than a week out of a year to achieve it, but we do need to keep talking, keep listening most importantly to not let any parents – Mums and Dads feel alone and unsupported. Their – our babies mattered.

She wasn’t “just” a baby. She is ours; she was here for five weeks. She is Melody.

Julz.

baby loss, grief

Please Help Me To Understand. The Taboo

A taboo…In the grand scheme of things I am still really new to being a bereaved Mum, I’m still learning. Five years and five months since she took her last breath. Death lasts forever, it happened before her and of course since. In the bigger picture of being a bereaved Mum I am only an infant.

Society

I struggle to make sense of how society is a round baby (child) bereavement. The poor support, the boredom from people who don’t fully understand; the minimal timescale that society thinks a bereaved parent should be over it. If I were to say to a widow, “Isn’t it about time you were over that by now.” Or if someone had said to me, “At least you have your Mother, she can always marry again…” In response to the death of my Dad, I’d most likely have shouted them down if they had.

Disrespectful, downright rude. Yet if you lose a baby, in any way; the babies who never get to stay, I had to hear “At least she didn’t come home.” Or “At least you have other children.” People can be very unkind.

Why did all become such a taboo?

When did is become acceptable to attack a grieving parent? In history the dead (BBC website)-  ESPECIALLY children were remembered and respected in these photos. Staged photo with the dead to make memories, before the final goodbyes were seen as a mark of respect. Infant morality was a lot higher then too.

But why the change?

Friends share their babies who have never take a breath, photos are all the memories they have; but are then told to hide them away in inappropriate ways.

Acceptable behaviour

But in today’s society this behaviour is deemed acceptable. The attitudes of “We don’t want to see or hear about that.” It’s harmful. My own photos have been attacked by strangers, my photos only included her in life. It is harmful to the parents, harmful to the parents who want to make a change, harmful to medical research to try and change the mortality statistics. Because let’s face it there are still far too many babies and children dying who shouldn’t be.

I have donated to many charities in my lifetime from health related ones, animal welfare, refugees. If I can I will. The community spirit in all of the above is how it should be. But you mention baby loss people may as well run for the hills, just recently an acquaintance had a lip curl and even a slight snarl because I had mentioned my daughter, my dead daughter.

We do notice the awkward fidgets by the way.

Awareness

Talking about these babies, children not only make parents feel less alone but it brings awareness, can ultimately save babies lives or simply open up opportunities for people to be properly supported.

Millie’s Trust came about because Millie died, her parents using her memory have gone on to save hundreds of other from the heart ache they endure.

Maison’s Memory because a little boy died from an accident, now his parents work closely to help with safety measures to keep other babies and children safe.

Towards Tomorrow Together, again because a baby died, and now his parents help give resources to other parents going through the same.

These are just a few reasons why Baby Loss should never be a taboo. I know people get really annoyed and fed up with me speaking openly about you girl, about her death.

It is how I chose to deal with our loss. But most importantly it is because she is MY GIRL, our daughter.

Melody, herself has changed a procedure at the hospital, the R.O.P test, she has changed how quickly sepsis should be treated, and making sure extra staff or more appropriate staff are on in the evenings and weekends. The death of my girl did this, talking about our girl did this.

Understanding

So, please tell me.

Why is it so disgusting to speak and share about our babies?

Why do people think it is okay to be so insensitive to bereaved parents; to insult our babies?

I do understand that it is difficult to speak to someone who is going through such a loss but if you don’t find it acceptable to question a widow, or someone who has lost a parent or even a pet, particularly about replacements and moving on.

Then it isn’t acceptable to do it to a bereaved parent either.

We need to break this taboo.

We need to keep talking.

It isn’t catching, but it will save a life.

Melody and Me

Turn Yellow For Little Daffodils Week

little daffodils

 

Little Daffodils is a pregnancy and infant loss service, which provides group and online support, as well as face to face to anyone who finds a group environment difficult. We also supply sibling memory boxes and offer a stay and play session for children who have lost a sibling, so parents can gain support with those who understand.

Little Daffodils Awareness

This year we have decided to give Little Daffodils a much-needed boost, with various fundraising events to help extend the services which we provide. With this in mind, we are launching a week-long campaign to raise much-needed awareness for our fantastic network, by introducing a “Turn yellow for Little Daffodils” week.

This will run from the 19th February to 26th February, with a wave of light on the 26th.

We will be raising awareness of all losses, including various stories of loss and hope; sharing their precious babies.

We will share the services we provide; as well as information to help prevent women from the heartahe of losing their beloved baby. Plus signpost information about what happens when your baby dies, and what there is to offer. Small things, which can hopefully make a huge difference.

We would love to include your story; whether it is one of your babies who couldn’t stay, or how you come to meet the baby after. Sometimes the greatest power is knowledge; knowing about the conditions which take them from us can empower us to ask more questions.

This will be shared across Instagram, Facebook and Twitter.

You can find pictures here, should you wish to turn yellow in suport of our first campaign.

I hope you can join us. Stronger together.

#togetherforyellow

#littledaffodilsawareness

baby loss, grief

Burning Out and Healing

I’m not entirely sure where I am heading with this; so please bear with me. I am fully aware that to some this is probably not a problem and that people are going through worse things right now. But I am struggling.

Burnt Out, tired, heavy-hearted – nothing is ever the same.

Christmas 2018, the turning point for me. I love Christmas, even the first year as being a bereaved mother I still wanted to soak up the magic, savour every beautiful moment. But this last Christmas, I was there but felt nowhere near there. It was the first Christmas for many, many years that we had social plans I was able to spoil the children a little; to anyone looking in – to me, it looked perfect.

But I also felt numb, I don’t even know why; I began to feel heavier and heavier until I guess I had lost all feeling and was just going through the motions.

After the new year, days into the new year resolutions are thought of; plans being put together for another wonderful year of memories. One thing on my list is to be happy. Then I was hit, hit with the sadness stick, that sadness stick I get every bloody year as January hits because February is her birthday, the countdown begins. It was this that made me tearful, as I do every January, grumpy as I do every January “another year without her.”

Days into the new year I find myself telling my husband, the father of our dead daughter, that I no longer want HER in my life. I don’t want or care for being a “bereaved” mother. It’s shit, it more than sucks – sucks every bit of life out of me. A life sentence, I guess. (If you question the need for that sentence, you may not fully understand this post).

I am more than a bereaved mother – I am a Mother, a wife, a friend, a student and employee.

What kind of mother doesn’t want their daughter in their life anymore?

It’s the constant battle of guilt, love, and pain. Trying relentlessly to keep her memory alive, but who for? Sometimes it feels like nobody is listening anymore.

Fundraising right from her death, now a support group, which the group is a wonderful achievement, but sometimes – just sometimes I wish I didn’t do it alone or feel I must try and compete. It wasn’t what it was meant to be about.

And I am just causing myself pain.

I’ve never been in a coma; nor do I know much about them. But watching an episode of a TV show of a guy who had been in a coma for 16 years, to wake up and his family had moved on, nothing is the same.

Since I spoke to my husband and a friend who understands; it is like I have awoken. I don’t have this crazy amount of energy, but it feels like I have been asleep for nearly seven years and woken to change, family changes; different friends, old friends are gone, making new friends. Kids which have grown, but I feel like I have missed so much. Everything seems unfamiliar, not knowing entirely who I am.

We never asked for any of this. I never wanted her out of my life, my own child. But she is, the painful thing, the painful truth is that no matter what I do – there is NOTHING I can do to bring her back or stop being her mum. I need to live, not survive – I’m not a victim. I need a life.

Now I must rebuild and heal.

Relationships have I understand broken, moved on. But that also means I need to stop questioning people’s choices, stop blaming myself for every little mistake when relationships break down.

I need people to know that I really am not a bitch, that I am working on rebuilding the person I was before – okay maybe that is optimistic, as I can’t fully remember our life before; but I was a newlywed. I married my soulmate, I am so lucky that he is the ONE person to not walk away or expected anything other than love from me.

Most importantly it is bringing the fun back to motherhood, I always wanted to be a mother. That is what I am.

I am a Mum first. Melody is just a part of my story; I miss her – but I miss living that little bit more. (Don’t judge me). I’m afraid of being miserable for the rest of my life.

I will always love her because she will always be my daughter, she will always have a birthday and an anniversary. I will still say her name.

But I have to LIVE the weeks before those dates, and not simply exist.

 

I know I have pissed people off and hurt others, I am not the person I was; I probably never will be. I am sorry for that. I am trying.

As they say, you can’t sip from an empty cup.

Just be patient with me, I don’t expect it to be easy, sit with me in the dark, while I find the light. Because this past year I have laughed and lived so much, that I know there is so much more to me than pure darkness.

That is all I ever wanted, love, laughter, and happiness.