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.

 

capture your grief

Wisdom. Capture Your Grief

What wisdom could you share for family and friends wanting to help a loved one who has experienced the death of their baby or child? When she died we made the difficult decision to share her death on social media. But of course, looking back now I wish we’d waited and announced in a more controlled environment and slower. But I guess there’s not a right or wrong way to have done it. We were receiving “Get Well” wishes, but she had already gone.

Wisdom for friends and family.

Make sure you contact the parents/family of the lost child. Their whole world has been blown apart, they’re looking for people to give answers, for eyes that tell them that everything is going to be okay. They’re also looking for blame, for someone to say it was all a mistake.

It’s so isolating, not everyone will be able to understand what you are going through, but empathy goes a very long way. Thoughts on helping a family to remember their baby, allowing them to speak freely, without being forced to feel like they have to move on, get over it or remain silent. Their much loved, much wanted child died, the unimaginable has happened, families need love and not misguided advice, which ends up hurting people more.

Leaving the bereaved alone, leaves them questioning themselves about their actions, about why nobody wants to support and help them.
Making them feel like they’re to blame for everything, from losing their child to losing their network of family and friends.

It’s important to keep being there, they’re allowed to cry, scream and be angry. But laughing and joking, it doesn’t mean they’re healed; it just means that they are finding a way to cope, to be free from the pain of losing their child; even if for just a moment.

Just be there when the bad days are dark, because the lighter days are of beauty, and shouldn’t be missed.

capture your grief

Healing. Capture Your Grief

What does healing in grief mean for me? Well, the very first thing I would say is that I’m not healed in a way that maybe I should be. You know, when you imagine an open wound that eventually closes over through scarring. It is there you know it is there, but it remains closed; it is almost forgotten – at the very least you don’t think of it much.

When people combine the words healing and child bereavement, all the above is exactly what “outsiders” view. You go through the stages, the death (the initial puncture to the skin), the coming to terms and things like the funeral, (the beginnings of healing). Then the aftermath (the final scarring, healing process). Then you’re meant to just get on with it.

But healing from the death of a baby or child, looks completely different. There is no scar tissue to help rebuild what is hurt; it doesn’t protect you from more pain. It can feel relentless, like the heavy painful feeing will never go away; reopening at unexpected moments.

You simply do not recover from this.

Healing looks different.

Healing isn’t always about moving on and forgetting. It comes in the shape of tears and laughter. Anger and joy. For me it I about being able to carry a legacy on for her. I have struggled with believing that she is with me all the time, I wish she as – but she isn’t. However, by talking about her, doing things in her memory, helps me with the guilt which surrounds her birth and then her death. I guess, it is like a walking stick, it helps me feel like I am doing something for her.

 

Time is a healer.

It isn’t, I just makes the length of time since I last held her longer, seem so far away. Time makes me forget things, it makes me forget her smell, and how she felt. Time makes it hurt more.

 

I’ll never be healed, but I know how to adjust the tape and glue.

capture your grief

Rituals. Capture Your Grief

Rituals.

From early on, I’ve always wanted to make sure that I could do something for her. Not on the same levels as her siblings of course, but to make sure she is included. Rituals to us, it felt important for her memory.

Melody’s footprints

From the first few months, we felt it important to include her name somehow. Written in the sand, or other creative ways. We paid a visit to a local attraction, and there’s an area called “Melody Close”; an open-air theatre, where small shows are available to watch. It was one of the first photos of her name we took, now each time we visit, we always try to get a photo; watch them grow around the name.
We’ve recently hit approximately 200 location photos from people in various locations around the world, including California and Miami.

Her Grave

We don’t visit very often now, I hate to say it but we simply don’t always have the time, but I also hate having to say goodbye each time.
Every birthday we visit and make her space tidy and give her a birthday theme to match her age in which she should have been. We also always go out for lunch and eat cake.
Her anniversary we’ll just take flowers.  At Christmas we’ll also give her a special Christmas place, as well as Halloween too.
Her siblings are majorettes and perform in carnivals so, we tend to match her colours with the colours the majorettes use. It’s the least we could do.

It may not be the right thing to do. But it’s our thing to do.

 

Little Daffodils

 

Everything surrounding her death and the aftermath, has been a complete eye opener, the lack of understanding, the lack of support. I wanted to try and change the aftercare, make sure nobody is ever left out, or left alone.
There is a very long way to go, but as a small group, we’re taking the steps to make it happen.

I just want to make sure that she doesn’t get forgotten.

little daffodils pregnancy and infant loss support service

 

 

capture your grief

Today. Capture Your Grief

Where am I in my grief?

Well contrary to what people think we should be, I’m still a bereaved mum, I am still grieving.
Life changed, I changed too. Sometimes I think for the worst, while others I think I have changed for the better.

When we were asked about switching off her life support we knew from that moment, nothing would be the same.
I just never expected that once her final breath had faded, our bodies changed too. Broken, battered.

Today it has been six years and three days since that moment of goodbye.
I don’t think I’ll ever get over the shock, from one day a healthy baby to gone, forever the next day.

Today

Today, I got “sideswiped”. Today my grief became so overwhelming, my passion for trying to make sure our daughter will never be forgotten made me feel worthless. I felt heavy and not in control of my feelings. I felt like shit today, like nothing I ever do will be enough. Frustrating at not being heard; being made to feel repeatedly that our daughter, her life and her memory doesn’t matter enough to be heard.

I hate how this type of grief catches you, so off guard that you could be on top of the world one minute; then the next you can barely breathe. Nothing seems to compare; after my Dad died, it never felt like my soul had been broken. I could stop take a moment, and then carry on. I no longer visit his grave, because I know he isn’t there, he is around us.

Melody, she is where she lies, I don’t feel her around me – I hate that too.

Today everything went dark, everything felt heavy. Today I begun this post with good intentions of how far into this journey I am, that I can face the day; that being six years down the line I can’t breathe.

 

But today has been shit.