Neonatal Loss – Mothering A Rainbow

Baby Loss Awareness Week 2020

Posted on October 24, 2020October 24, 2020 by Amy

For 5 years I have supported BLAW, or tried to. I have a habit of getting very overwhelmed with the things others do to raise awareness and end up feeling like I haven’t done enough, like once again I’ve failed Jason for not doing “more” and I end up giving up and really only remembering to do the Wave of Light.

This year I took a step back, reminded myself that by taking part in BLAW and sharing our story that is enough, I know Jason would be proud of his Mum for talking about him and making sure the world knows he existed. I know I do “enough” because living through this hell is enough. I jotted down some ideas, planned my social media content and I survived the week sharing my story and getting people to talk about a topic that nobody wants to talk about let alone have to survive through.

I then decided I would share the posts here, in one post, for myself to look back upon but also for anyone trying to navigate the world of baby loss and wanting to know they are not alone. If this is you, I promise you, you are not alone and you will “survive” you will feel happiness again and sometimes you will still cry. Remember, my inbox is ALWAYS open!

Day 1

💙𝘽𝙖𝙗𝙮 𝙇𝙤𝙨𝙨 𝘼𝙬𝙖𝙧𝙚𝙣𝙚𝙨𝙨 𝙒𝙚𝙚𝙠💙
Today marks the beginning of baby loss awareness week – something I knew absolutely nothing about. This week I’d like to share our journey, Jason and the love I have for the boy who made me a Mummy. I appreciate that for a lot of people the thought of losing their baby/child is one they don’t want to imagine but for me and thousands more it’s a reality we live with every day. I talk about Jason because he existed, he grew inside me, he was born and he lived. He deserves to be remembered, loved and shared with the world. I hope you stick around and please be kind. There will be lots of mums grieving this week, some openly, some in secret.

If you’re thinking of a baby gone too soon, whether it’s your own or a loved one – please share their name below ❤️

Day 2

💙𝘽𝙖𝙗𝙮 𝙇𝙤𝙨𝙨 𝘼𝙬𝙖𝙧𝙚𝙣𝙚𝙨𝙨 𝙒𝙚𝙚𝙠💙
𝑃𝑟𝑒𝑔𝑛𝑎𝑛𝑐𝑦
I found out I was pregnant just a few weeks after we’d got married – meaning I was already pregnant when we got married. It came as a huge shock as we hadn’t planned on trying so soon but was over the moon to be starting our family. Honestly, my pregnancy was pretty standard, no morning sickness, no health issues and little man was growing perfectly (or so we were led to believe). Looking back, I can see things were so perfect and wish I wasn’t so naive. This picture was taken hours before Jason was born – the last bump pic, a very spontaneous one just because but I’m so glad I did as this was the last moment everything felt perfect 💕

Day 3

💙𝘽𝙖𝙗𝙮 𝙇𝙤𝙨𝙨 𝘼𝙬𝙖𝙧𝙚𝙣𝙚𝙨𝙨 𝙒𝙚𝙚𝙠💙
𝐵𝑖𝑟𝑡ℎ
I’ve written Jason’s birth story down so many times but it doesn’t get any easier. Jason was born during an unexpected homebirth at 35 weeks. I was under the impression that we’d made it through the danger zone and at 35 weeks it would all be okay. Of cause it wasn’t. There is no safe zone in pregnancy no matter what you are told. My boy lived for 37 minutes and I am so proud of how much of a fighter he was. Jason’s story is written in full on my blog if anyone wants to read it – it’s too much to write on a caption but I also wouldn’t want to upset anyone or trigger anyones grief.

Day 4

💙𝘽𝙖𝙗𝙮 𝙇𝙤𝙨𝙨 𝘼𝙬𝙖𝙧𝙚𝙣𝙚𝙨𝙨 𝙒𝙚𝙚𝙠💙
𝐹𝑢𝑛𝑒𝑟𝑎𝑙
We weren’t prepared for planning a funeral. Wed prepared ourselves for dirty nappies, sleepless nights and bottle making. We didn’t know the first thing about planning a funeral.

We didn’t allow people to attend, close family was it. I knew it would be hard for me not to put on a brave face if others were there. It was a simple ceremony, no words were spoken – how do you talk about someone whose life barely began? Standing watching his tiny coffin disappear behind the curtain, wondering whether we made the right choice, wondering whether any choice was the right choice. Those who have always been the strongest crumbled, I hated that I couldn’t protect them from the pain. I hated that I couldn’t just pick him up and take him away from it all. I felt so helpless.

Day 5

💙𝘽𝙖𝙗𝙮 𝙇𝙤𝙨𝙨 𝘼𝙬𝙖𝙧𝙚𝙣𝙚𝙨𝙨 𝙒𝙚𝙚𝙠💙
𝐿𝑖𝑓𝑒 𝑎𝑓𝑡𝑒𝑟 𝑙𝑜𝑠𝑠
I’m sure you can imagine, our lives changed so much after Jason’s death. We couldn’t stay in the house we loved so much, it was tarnished by his death, the room where all his things were kept was empty and echoed with the loss we faced. We moved; we adopted Luke’s nans cat in the move and I hated the thought of having a pet – I was meant to have a baby not a pet. However that little ginger furball saved me more than I ever thought he would. He gave me a reason to get up and function and without that I’m not sure I’d have “coped” through the first year without Jason. Misty became part of our family and was so protective over my Ellie bump before he died. Ellie’s birth gave us so much happiness, I feel so privileged to be her mummy and I don’t take any moment with her for granted. I know how short life can be and I know the way I parent has been tainted by the thought that anything could happen and I could still lose her. That’s how a grieving parents mind works. Life after loss seems fairly “normal” to the outside world, we function just like we would if Jason hadn’t have died or if he hadn’t existed but inside we are still grieving and will always grieve for the boy he should have been.

Day 6

💙𝘽𝙖𝙗𝙮 𝙇𝙤𝙨𝙨 𝘼𝙬𝙖𝙧𝙚𝙣𝙚𝙨𝙨 𝙒𝙚𝙚𝙠💙
𝐽𝑎𝑠𝑜𝑛’𝑠 𝐿𝑒𝑔𝑎𝑐𝑦
That is your legacy on this Earth when you leave this Earth: how many hearts you touched. To date we have raised nearly £4000 for different baby loss charities, all in Jason’s memory and created a library in our local hospital bereavement suite full of books and stories relating to loss and specifically baby loss which has already helped so many families in the early stages of loss. I feel incredibly proud to be the mummy of a boy who has touched so many lives without ever meeting anyone. In December we take part in #adventtoremember which is such a wonderful way of remembering loved ones throughout December in any way you see fit – we do family trips, Christmas themed activities and raok, I share Jason in as many ways as I can.
𝐈 𝐜𝐚𝐧’𝐭 𝐭𝐞𝐚𝐜𝐡 𝐦𝐲 𝐬𝐨𝐧 𝐚𝐛𝐨𝐮𝐭 𝐭𝐡𝐞 𝐰𝐨𝐫𝐥𝐝 𝐛𝐮𝐭 𝐈 𝐜𝐚𝐧 𝐭𝐞𝐚𝐜𝐡 𝐭𝐡𝐞 𝐰𝐨𝐫𝐥𝐝 𝐚𝐛𝐨𝐮𝐭 𝐦𝐲 𝐬𝐨𝐧, 𝐨𝐮𝐫 𝐣𝐨𝐮𝐫𝐧𝐞𝐲 𝐚𝐧𝐝 𝐫𝐚𝐢𝐬𝐞 𝐚𝐰𝐚𝐫𝐞𝐧𝐞𝐬𝐬.

Day 7

💙𝘽𝙖𝙗𝙮 𝙇𝙤𝙨𝙨 𝘼𝙬𝙖𝙧𝙚𝙣𝙚𝙨𝙨 𝙒𝙚𝙚𝙠💙
𝑊𝑎𝑣𝑒 𝑜𝑓 𝑙𝑖𝑔ℎ𝑡
For my son, the little fighter who made me a Mummy. The Little man who I was so lucky to have held and love with every part of my heart. For all the babies who have gone too soon, for all the ones we didn’t get to bring home.
I light my candle because I am 1 in 4.

Day of Hope

Posted on August 19, 2019 by Amy

One definition of Hope: to want something to happen or to be true, and usually have a good reason to think that it might

19th August in the baby loss community is A Day of Hope. A day to remember all those babies and children who died. A day where people are encouraged to break the silence around baby loss. Whether that is a miscarriage, a stillbirth, neonatal or infant loss, they all matter.

Hope is a strange emotion after loss, for me I found it hard to hope for anything that couldn’t be guaranteed. I didn’t want to feel excited about things if they weren’t going to happen. The hope of meeting your baby during pregnancy is the best feeling in the world but once my eyes were opened to the fact that babies can and do die, having hope wasn’t something I found easy to do. I hoped for my Son, I was so excited to meet the little person growing inside me and although I did meet him, it certainly wasn’t in the way I was expecting and all my hopes were shattered.

Today, I hope that someone is given the courage to talk about their loss, their baby or child. I hope that someone reading this knows that their children matter.

I am not afraid to openly talk about my son who was born, lived and died on the same day nor am I afraid to talk about my loss. Jason’s story is still one of my favourite stories to tell, the ending isn’t happy but, as most of us know, not all stories have a happy ending. I will say his name and share his story for as long as I live. I will break down those barriers that stop parents and others talking about the loss of their own babies.

Aching Arms, baby loss, baby loss awareness, grief, Jason, life after loss, motherhood, Mum Blogger, mummy blog, Neonatal Loss, parenting after loss, stillbirth

Primary School Offer Day

Posted on April 16, 2019 by Amy

In an ideal world I’d have been one of those nervous parents waiting to find out what school my boy had gotten in to. In an ideal world he’d have been accepted to the primary school where I work! In an ideal world I’d already have his uniform, or parts of it in preparation and be excitedly making him try it on for pictures. In an ideal world we probably would have had to put Jason in to the special needs school because that is where he’d have the support he needed. In a less ideal world we’d have to settle or appeal the decision.

I would give so much to be able to take that less ideal world. To be one of those excired/nervous parents dying to know.

Things like this shouldn’t cause me grief, I probably wouldn’t even acknowledge it if I didn’t work in a school however when September comes and I see all those parents and little reception newbies on their first day I know it should be me there too. I will see their anxiousness and wonder whether I’d have felt the same or whether we would both be ready for him to start school. I feel like Ellie is ready to start nursery so I know she will be fine but I will never know what Jason would have been like.

My life with him seems further and further away with every milestone that we don’t hit together. I’ve missed his first words, first steps, first hug, first smile and now ill be missing his first day at school too.

Of cause I miss him constantly and the ache I have to have both of my children here is never ending but sometimes days are harder to deal with than others and there are some days where you just can’t help but think how fucking cruel the world is.

Aching Arms, baby loss, grief, Jason, life after loss, motherhood, Mum Blogger, mummy blog, Neonatal Loss, pregnancy and infant loss, Pregnancy Loss

27th March

Posted on March 27, 2019 by Amy

I can’t help but wonder whether that day was when everything started going wrong.

Illness had struck, I worked in a nursery at the time and the sickness bug had hit the kids. The day I was due to finish for my maternity I ended up having off as I was being sick and I felt so bad for not working my last day.

I hadn’t thought much of being sick, other than being grateful I didn’t suffer from morning sickness as I just wouldn’t have coped. I’m not a good sick person at all. I spent the day on the sofa, wrapped up in a blanket feeling baby kicks (or so I thought… More like flutters with him being so tiny!) and generally feeling dreadful. I had a constant smell of cigarette smoke around me which was odd as I have never smoked and no one was near the house. To this day I wonder whether someone was trying to tell me something was wrong. That in just 2 days my baby would be gone.

I have since learnt that being sick can be a sign of labour starting and I wonder whether I had signs but was too naive to recognise them. I had just turned 35 weeks pregnant and was innocent in thinking I had 5 weeks to go before we’d meet him. I was unaware that babies were born so early and it’s not something midwives tell you is a possibility either. I feel that the information you are given is just what they think you want to hear not what you should actually know.

The next day I felt perfectly fine, I’d cancelled plans with friends because I had been ill but actually thought about uncancelling due to how much better I felt. I’d taken a picture of my growing bump in a summery dress, we took a stroll to Tesco for pizza as it was what “baby wanted” and while walking around I had started to feel some pains in my tummy that felt a bit like constipation pains… Of cause I know now that they weren’t at all and I should have taken them more seriously and got checked out. Maybe if I had have been checked we’d have been able to save him, we’d have had a chance of saving him.

I think every grieving parent goes through life finding ways to blame themselves for the loss of their baby/child. Those “what ifs” haunt me 4 years later and they always will. Not a day goes by where I don’t feel like I should have known something was wrong and done something.

baby loss, life after loss, motherhood, Mum Blogger, mummy blog, Neonatal Loss, parenting, parenting after loss, rainbow baby

Weekends

Posted on March 25, 2019 by Amy

This weekend has been a tough one. The one before Jason’s birthday. The one where we were meant to make some family memories. The one where Ellie had the most epic tantrum of all time. The one where Mummy cried far more than I would like to admit.

The one where it all went tits up basically.

I have found that making plans spontaneously means those plans can get broken very quickly. We decided to “celebrate” Jason’s birthday early this year as we aren’t sure how I am going to feel with Mother’s Day following his birthday this weekend and wanted to take Ellie to the Zoo. Unfortunately we didn’t make it to the Zoo as by 8:30 Ellie had multiple trips to “the step” and I was defeated.

The day didn’t seem to get any better and it just felt wrong. I so badly needed to spend time together as a family that I think it made it harder to deal with Ellie’s tantrums. It’s hard being a parent after baby loss. It’s hard being a parent.

baby loss, grief, life after loss, motherhood, Mum Blogger, mummy blog, Neonatal Loss, parenting, parenting after loss, pregnancy and infant loss, stillbirth, telford

Goodbye February

Posted on February 28, 2019 by Amy

Goodbye February, this month has been a mixed month. I started off feeling very low and depressed and finished the month off feeling grateful and full of love. As a family we have made so many memories and spent a whole week together having lots of fun.

With the end of February comes March, a month I literally dread. We have lukes birthday on the 4th which I love as I’ve always loved being able to spoil him and show him how much I love him. We’ve always celebrated his birthday with a meal out with his family and we are going to a local favourite place of ours (I may post about it after) on Sunday for Sunday lunch which I am looking forward to.

The rest of the month is a countdown. Reliving the days and weeks before Jason’s death, trying to come up with a reason it happened or something we have all missed. Blaming myself because I was naive to think I deserved to have my baby and that babies were safe! I actually hate the person I was because I was ignorant to the fact that this has happened for thousands of years and it still happens today.

4 years ago I was blissfully unaware that in just 29 days my whole world would collapse. I was hoping my unborn baby would arrive early, impatient to meet him1her and moaning about my pregnancy aches and pains. 4 years ago I wasnt at all scared about being pregnant or that something bad would happen.

In 29 days my son SHOULD be 4. I SHOULD be planning his 4th birthday party and inviting all of his friends from nursery. I SHOULD be spending my money on a few more presents because he deserves it and buying the best birthday cake because if he was like his Mummy and Little Sister he’d have loved cake. I SHOULD be deciding on the theme of his party and writing lists of the food I would need to buy.

Those things were stolen from me. Taken. Gone.

All the things I dreamed of doing as a parent, as a first time mummy, were taken from me the day we were told Jason only lived 37 minutes.

His whole life was spent looking at doctors, nurses, paramedics trying to save him. He never got to be with his parents, the people who love him. I never got to hold him alive.

With March comes a whole lot of memories of that day, one’s I try to suppress partly because it hurts so God damn much and partly because after 4 years you are expected to just get on with it. Jason’s birthday I will have to get up, go to work, pretend that 4 years ago I didn’t have to say goodbye to my son and I’d never see him again. Pretend that everything is okay even when it isn’t.

March is the month that gave me my son and I will Always be grateful for the short time I had with him but it is also the month that took my son away and I can’t wait for it to be over.

baby loss, grief, life after loss, mental health, motherhood, mothering a rainbow, Mum Blogger, mummy blog, Neonatal Loss, parenting, parenting after loss, Positive Wellbeing

Positive Failure

Posted on February 26, 2019 by Amy

A while back I shared the struggle I was having with myself. My mental health was taking a right beating and I was finding it hard getting it back to a healthy balance.

It took a while and a complete breakdown for me to realise that I wasn’t failing. I have spent days, weeks, months feeling like I am a failure. Failing at being a mum, a wife and a friend. Basically failing at being a human being. But the truth is I wasn’t failing at all, I was having a hard time and that is okay. Positive failure.

Admitting things arent perfect is okay. It doesn’t mean you aren’t the best person you can be at that particular time.

Since my “breakdown” I’ve felt better. Something in me may have snapped but I’ve found I can make it even stronger. Positive failure.

I’ve made an effort to be calmer, I’ve made an effort to do more things with friends, simple things like talking more but it’s a start and I celebrated my birthday with the most amazing people I could wish for and it reminded me of how lucky I am to have people who care enough to tell me Im not myself.

That was a hard one to hear, I could sense it in myself but no one has ever said it so plainly as someone I have known pretty much my whole life. I’ve spent so long pretending I am okay, smiling as is I’m not broken inside and hoping others accept it that actually I’d forgotten how to show my true feelings when I needed help.

In the past few weeks I really have noticed a huge change in the way I feel. I feel happier, I’m not as stressed out over slight things. Ellie’s tantrums aren’t taking me to breaking point when actually they aren’t that bad and in return Ellie has been happier. We’ve had more good days than bad days and was able to enjoy our half term off as a family. We made memories that I hope I will never forget and my heart is full of complete love and happiness.

I know this feeling may not last as long as I would like, saying Goodbye to a lovely February means saying Hello to March. To a month that starts off so happy with Hubby’s birthday celebrations but once the 4th is over it turns in to a countdown until Jason’s birthday. The day we should be celebrating his 4th birthday and yet a day where I am reminded of everything I gained and lost within moments. The day he died and I had to say goodbye.

Please be mindful that if I seem distant and off, it is not intentional. I am just grieving for the life of my son who I can’t hug and who I miss so much every day. My heart breaks with every memory we make as a family because he will always be missing but I am also grateful we can make these memories with Ellie, she saved me in ways she will never know and I will always try to be better for her. She is the reason I breathe and for her I will try and make March as gentle as I can.

baby loss, baby loss awareness, grief, life after loss, motherhood, Mum Blogger, mummy blog, Neonatal Loss, parenting, parenting after loss, pregnancy and infant loss, stillbirth, telford

Gone Too Soon

Posted on January 18, 2019 by Amy

Not a day goes by
That I don’t think of you
I’m always asking why
This crazy world had to lose
Such a ray of light we never know
Gone too soon

Whenever I use the laptop to do some blogging I always find myself listening to the same songs. Sad songs. Ones that make me think about grief and death and everything that has happened to my family.

It makes me sad, angry, confused but it makes me feel closer to Jason somehow, like by listening to sad songs it reminds me that it is okay to not feel okay. It’s okay that I’ve felt so low and confused but I’ve lashed out at those I love for no reason and I don’t know why.

You are my one and only
You can wrap your fingers round my thumb
And hold me tight.
And you’ll be alright.
Maybe you were needed up there
But we’re still unaware as why.

Lyrics are incredibly powerful, you can feel so much just by really listening to lyrics. Sometimes the happiest sounding songs are the ones filled with the most unhappy memories. For a long time after Jason died I couldn’t listen to music. I remembered spending hours and hours searching for the perfect songs to play at our wedding, each one linking in someway to our relationship, our love and I remembered the joy it gave me.

Like a shooting star
Flying across the room
So fast so far
You were gone too soon
You’re a part of me
And I’ll never be the same here without you
You were gone too soon

The next time I researched the perfect music was for my son’s funeral. Can you imagine how that feels? Finding the perfect music knowing you will never be able to listen to that song in the same way? Knowing that the next time you will have to listen to it is when you are standing looking at that tiny coffin that is holding the baby you longed for so much.

Music was no longer my safe place, it was there reminding me that I was going through the worst and it didn’t matter how happy the music sounded, each one made me miss him so much. Like I said, it took me a long time to find joy in listening to lyrics again but sometimes you need to wallow in your own grief, find those sad songs and sing them as loud (in your head in my case!) as you can and belt out those feelings. For me, this is as much a type of therapy as if I was actually having counselling; it’s a way for me to remember that my life turned upside down, I didn’t know how I was going to make it to the next day, I couldn’t imagine a life without Jason. I didn’t want to imagine a life without him. Sometimes I still wonder whether I’ll wake up one morning and he’d be here, sometimes my mind wanders to a life with him in and it hurts so much knowing i’ll never know what that life could have been like.

Lately I have been struggling balancing life, work and everything in between. I have no patience, I am cranky and frankly a bitch. I don’t really understand why Luke stays with me, I put him through so much and I’ll never forgive myself for making him go through all of this. To the outside world I have dealt with Jason’s death with strength but inside that’s so not true. I am not strong, I’m just good at showing people what they want to see. Society wants us to “get over it” “move on” and although I am open in talking about Jason, every time I have to explain his death my heart breaks once again.