Tag: pregnancy and infant loss

Posted in parenting

Baby Loss Awareness Week 2020

Posted on 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.

Posted in baby loss, baby loss awareness, life after loss, Neonatal Loss, pregnancy and infant loss, Pregnancy Loss, stillbirth

Day of Hope

Posted on 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.

#saytheirnames
Posted in 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 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.

Posted in 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 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.

Posted in baby loss, baby loss awareness, grief, life after loss, motherhood, mothering a rainbow, mummy blog, parenting, parenting after loss, telford

Saying Goodbye.

Posted on by Amy

28th April 2015

Our final goodbyes. I don’t know how we got to that day, the month after Jason’s birthday seemed like a whirlwind and not for the reasons we wanted it to be. 

Looking back I realise that we didn’t know how to plan Jason’s funeral and there was no-one to really offer any support either. Our bereavement worker didn’t have much to do with us after our second meeting so she hasn’t really given us any clue how to go about it. I didn’t want to think about planning my sons funeral at all and so my mum got in touch with a local funeral directors who they had used to plan my Nan’s funeral. Jason’s  body wasn’t going to be released until after his post mortem so it give us a bit of time to meet with them before he needed to be moved.

I remember that meeting so vividly. My parents drove us and stayed with us while we made those heartbreaking decisions. Looking back I wish we’d have known more, said more, done more to show him how loved he was/is but in reality we just wanted it over with. We chose a basic coffin, I can’t even remember what kind! I feel like I have failed him so much in this journey because my mind has blocked out the pain. I think it was a wicker coffin but it may have been white. We drove ourselves there, not wanting to ride in a funeral car. Jason wasn’t taken from home but from the chapel of rest. I didn’t know having him at home was an option, one I think i would have wanted but I know I wouldn’t have been able to let him go again. We knew what music we wanted, one song, repeated just a couple of times. I knew I wanted “Here Without You” by Three Doors Down, it may be a song about lost lovers but the lyrics meant so much to me, hubby didn’t want to think so let me choose. 

We decided Jason’s funeral was to be just close family, us, grandparents and great grandparents and Jason’s uncle. I knew if anyone else was to come that I wouldn’t be able to grieve for my son who was lieing in the coffin. I would have felt like I needed to be strong and I didn’t want to be. I didn’t want to take smile at friends who just didnt understand but would have been there because they loved him too.We needed to let our emotions out and say goodbye the only way we knew how. 

After talking to others I decided not to go to the chapel of rest, I wanted the memory of Jason to be me holding him, not him in there but my mother-in-law went as did lukes nans. They assured me he looked peaceful and beautiful but that is something I’ll never know for myself. I wish I had gone, dressed him, given him one final kiss goodbye but I didnt. I always think of him lying there, would he have known how much his mummy loved him? Would he have felt abandoned because I didn’t go and see him? 

I don’t know how but Luke carried Jason’s coffin in, along with my dad, Luke’s dad and my brother in law. I walked behind them just staring at the tiny box holding him, knowing his body was in there but also wishing it wasn’t and it wasn’t my sons funeral I was walking in to. It wasn’t his body being burnt to ashes. It wasn’t my family being left broken, it wasn’t me wishing it was me in there instead of him. We left daffodils on his coffin when we walked through the door. There was no eulogy, nobody spoke we just stood in silence listening to the music I spent hours deciding on. Waiting. Waiting for the curtains to close and for my boy to be gone forever. 

We spent longer than we wanted waiting for them to change the music but I stood there holding my husband’s hand while he was secretly holding the near Jason had with him in the hospital. The bear I wanted to bring but didn’t as Luke hadn’t been able to look at it. The bear that lay next to him in the only pictures we have. The bear that wasn’t much smaller than him and for perfectly in to Luke’s suit pocket. This tiny bear has so much meaning to us and I’m so glad it got to say it’s goodbyes too.

Jason’s funeral was held in 28th April 2015 at 11am. It needed to be early. I couldn’t sit around pretending to be okay for the entire day. 

Jason’s funeral was the day before his due date. Jason was due on the 29th April 2015. This should have been the happiest day of our lives, a due date brings so much hope and happiness to a mum but Jason’s due date was the first day I had to live knowing not just he had died but that his body was gone too. 

Posted in baby loss, grief, life after loss, motherhood, mothering a rainbow, mummy blog, parenting, parenting after loss, Uncategorized

October.

Posted on by Amy

October is Down Syndrome Awareness Month and to me is pretty important. As you may know October is also Pregnancy and Infant Loss Awareness Month and for me, both go hand in hand.

A year ago a documentary was shown on BBC Two called A World Without Down Syndrome, a documentary that I’d been dying to watch and excited to see how DS was portrayed by someone who actually lived with DS rather than people who knew very little about the condition. It’s about time the world saw just how this condition changed lives but not in the dreaded way the media make it out to be.

I couldn’t and refuse to think of a life without my brother in it. Since we were small I’ve looked after him, protected him, thought of him as more than a brother, he’s my friend too. My parents did not know he had DS until he was born, and to this day they have been honest in telling the world that if they had known they don’t know what they’d have done. I’m grateful that they didn’t know. More grateful than most people could imagine. This dot make them bad people, it meant that DS was unheard of. The condition wasn’t spoken about (much like pregnancy and child loss still is now!) and people were afraid of what that meant for their child. I thought that this idea of DS being a burden had changed however was shocked to hear that 9 out of 10 people who are given a positive diagnosis then terminate their baby. How misguided they have been.

When I was pregnant with Jason, my brother’s DS didn’t really get taken in to account as it’s unusual for it to ‘run in the family’ however we had the screening test just to prepare ourselves if the risk was high. The screening came back low and we never thought about it again. When we found out Jason had DS we were sat in a hospital room discussing his post mortem. I couldn’t believe my luck that I’d also given birth to a child with DS, only Jason wasn’t as lucky as my brother was and didn’t survive. I did not and do not see Jason’s DS as being a burden. Many people have told me in the past year “It might have been for the best.” “You’ve done your share of caring for a child.” “Maybe someone up there decided you didn’t need another person with such complex needs in your life.” “He wouldn’t have been the same as your brother, maybe it was an escape.” All these words kill me. How wrong people have been. Jason AND my brother have never been burdens on me, I’d considered myself lucky to be carrying Jason any way but him having DS means he’s even more special to me. I don’t know whether his DS would have been more complex as my brother’s or whether it would be like watching him grow up all over again. That chance to find out was taken away from me and I’ll never know. I can just sit and wonder what life would have been like with my baby boy who just happened to have Down Syndrome.

I’m afraid to say I managed to watch maybe 5-10 minutes of the documentary before I was completely overwrought with grief that I began to cry uncontrollably. I realised the fact that people are still terminating babies just because they have Down Syndrome was just too raw for me. I would never have terminated my baby, regardless of whether we knew he had DS or not. I could never justify that being an option and the fact that Jason was stolen from me without me seeing him alive and seeing his beautiful almond shaped eyes and chunky tongue was too much for me bear and I couldn’t watch any more.

I hope any one who reads this blog can watch this documentary as I believe it’s needed to find out that people with DS are some of the most kind, caring, wonderful people you could ever meet. I’m not denying they can be hard work, but isn’t everyone at times? Yes they may have other conditions/issues but the love they provide is worth all the pain and hardtimes.

I would give ANYTHING to watch my son grow up and hit those milestones just like any other baby would. I would give my last breath to see the colour of his almond shaped eyes. I would give my life for him to have his. And yet others are given the option to terminate (right up until the very end of pregnancy) because they are too ignorant to know what DS can entail.

I know I am biased but life with someone who has Down Syndrome does not consume your entire life. For me, it’s made it far better than I could have ever imagined.