Category: baby loss awareness

Posted in baby loss, baby loss awareness, Ellie, life after loss, motherhood, mothering a rainbow, parenting, parenting after loss

Sleepover

Posted on by Amy

Ellie went for her first ever sleepover last night. She has been asking to stay at both her grandparents houses for a little while and I knew we needed to let her. She packed everything she needed; pyjamas, clothes,hair brush, toothbrush, DVD player, night light, 2 teddies and she was ready. She also wanted to take her curtains (i don’t know why) but with a little persuasion she realised she didn’t need them.

You see, my anxiety over her not being here has always stopped us from letting her stay over anywhere for the night. I know she is safe with both our parents, that’s not the issue, I just knew I would find it hard. I’m sure most, if not all parents, find it difficult leaving their children for the night for the first time but for me it felt like a repeat of history and I’m still not sure I’ll ever be prepared for her to not be here.

Whenever I think of waking up and Ellie not being here it takes me back to the first night after having Jason. Neither of us could sleep, of cause, so we sat on the sofa and watched awful comedy shows. We stayed up until the station turned off and even then sleep was hit and miss. I couldn’t go upstairs, knowing my son should be lying in his Moses Basket or his cot sleeping away. I was very aware that I should have still been pregnant but I wasn’t and the reality hit like a tonne of bricks that I was at home while my baby lay on his own in the hospital. That feeling is awful, unless you’ve been there you’ll never be able to fully grasp what it feels like being at home and knowing your life should have been so different.

Of cause, being a parent after you’ve lost your child is really tough, I’ve never really been an anxious person but where Ellie is concerned I worry about losing her more than is really healthy. I’m so unbelievably grateful that we were given a second chance at being “normal” parents but with each day that Ellie grows and becomes more independent the more I wonder what Jason would have been like now and the reality is I will never know. Due to Jason’s health complications I will never know what it would have been like to parent a 5 year old right now.

Anyway, Ellie absolutely loved her sleepover and has already decided she is staying at my inlaws next week. Mummy really struggled but fought back the tears and the urge to sit in her bedroom and cry those really ugly tears I get when I think about death and what my children would have been like together now. We slept, I woke up and it didn’t feel the same as when Jason died, I didn’t get that gut-wrenching feeling that she was gone, I knew she was safe. I may have cried a little once I’d picked her up and she was back in my little bubble but that’s allowed right?

Life is unfair and our lives should be different however I made a promise to my daughter that she would never be second best or miss out on anything because her big brother isn’t here and a sleepover (as little as it seems) is something she shouldn’t miss out on no matter how difficult it is for me.

I feel proud. Proud of myself for not letting my fears take over and proud of Ellie for being so grown up, spending a night away from us and not being bothered at all.

What age did your little one have their first sleepover? If they haven’t yet, i’d love to know why you haven’t done it yet (if you feel like sharing of cause).

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, baby loss awareness, fathers day, grief, life after loss, parenting, parenting after loss

Father’s Day

Posted on by Amy

First of all I want to wish all the fathers out there a happy fathers day.

I have always known how lucky I am to have a Dad who has always put our family first; a dad who has always been my hero; a dad who taught me to be proud of myself; a dad who has always put a roof over our heads and food on the table and never let us go without; a dad who gave me a love for music and for lyrics; a dad who always gave me a reason to be the best person I could possibly be. We aren’t good at telling each other how we feel, it’s not how we roll. I know which songs remind him of me and the songs that remind me of him. I know that he’s a pretty amazing dad because I’ve seen what a fantastic grandad he is to Jason and Ellie.

To all those fathers finding Father’s Day difficult for ANY reason… I get it. Wishing you a gentle day.

My husband is one of the best dad’s I could have wished for for my children. His start to fatherhood wasn’t easy but even then he stepped up and did more in a morning for his son than most parents do their entire lives. He gave everything that morning to bring Jason in to this world and I will never forget how amazing he was that morning. Losing Jason was so hard on him, the outside world seems to forget that Father’s grieve too, he was looked upon to go back to work after 2 weeks, to return to normal and forget that his son was born and died all on the same day. That’s tough. He carried on being the best dad to Jason, the love he has is undeniable. When Ellie arrived I finally got to see the Dad I knew he could be and was robbed of being. Day after day he is become Ellie’s number one. He is her favourite parent, he’s the one she asks to play, the one she demands take her to bed every night. The dad she has got wrapped around her little finger. He is the one making sure we both have a future and keeping us both sane. The look she gives him when he comes home from work is the cutest thing I have ever seen and she squeals with excitement when he wakes up in a morning. He’s not perfect (nobody is) but to her he is her world and I’m pretty sure she’s replaced me as his number one.

Sending special thoughts to those who don’t have their own dads to celebrate with today too. ❤️

Unpopular opinion I know but as much as I imagine being a single parent is (and I know I would struggle to do it so I’m not judging or criticising) but I don’t understand why people feel the need to make Father’s Day all about the mums who are doing it alone. We have mothers day and I’m pretty sure I have never seen a single dad moan or celebrate mothers day. Society is too quick to judge and this is specific thing really bugs me. I just don’t get it.

Posted in 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 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.

Posted in Aching Arms, baby loss, baby loss awareness, grief, Jason, life after loss, Neonatal Loss, parenting after loss, pregnancy and infant loss, Pregnancy Loss, stillbirth, telford

Always One Missing

Posted on by Amy

Wow, as always, the final few days of March were horrendous. I have said for a while now that for me, the build up to an anniversary is always harder than the day. This has been the case for all of Jason’s birthdays. I find the days leading to his birth/death hit me far harder because I carry so much guilt with those days; what if I’d have gotten checked out earlier, what if i’d have known I was in labour, what if I could have done something and I didn’t. Those who have lost a baby/child will understand what I mean by all this. The guilt seems harder every year too, i force myself (more like torture myself) to read past status’ complaining of feeling tired, having swollen ankles, feeling sick, I can’t help myself. I only ever activate my old facebook account on the build up to his birthday, knowing I will see these past status’ and knowing it will feel like a knife to the heart the closer it gets to his birthday.

This year as many of you know, Jason should have been turning 4. He should have been having a party with our family, friends, possibly even some nursery friends and I should have been knee deep in cake, balloons and presents! I wasn’t. I went to work, I pretended I was fine, I sat through a meeting about the mental health and wellbeing of our pupils which then turned into a discussion on a bereavement course our SENCO had recently been on and I just sat there. I wanted to storm out, I wanted to sob, I wanted to scream that Jason wasn’t just a bereavement, he was/is my Son. I didn’t do anything of those things, I welled up at times but composed myself. I decided I was going to ask to leave early, only half an hour so I could see Ellie. I needed to be with her. While I was waiting to speak to my boss, a male teacher got a call, his wife was in labour. I knew it was going to happen. I knew it would be that day. I just knew it. I felt like I was right back in the thick of my grief, the first days where the world kept on turning, everyone’s lives carried on but mine seemed to stop. I felt like I was watching everything in slow motion and it hurt. I did manage to finish early and in the end spent a really nice afternoon with Ellie, in our favourite garden, where I have taken her every year since she was born on Jason’s birthday.

A little garden in Ironbridge, with beautiful flowers, a little wooden park and a cafe that sells the most amazing cake which I treated Ellie too because I couldn’t treat her brother.

The weekend was pretty okay, we took Ellie to Chester Zoo, another tradition we have started since Jason was born. We have gone every year to celebrate his birthday as close to the date as we can. We had such an amazing day, Ellie was really well behaved and walked around most of the day. We walked 6 miles around the zoo, saw loads of animals and thought about Jason all day.

I was gutted that the elephants weren’t out of their house due to illness, I always feel closer to Jason when I see an elephant. Ellie loved watching the baby animals, her favourites being the Meerkats and I enjoyed seeing the animals we have watched on The Secret Life of The Zoo with her. We spent all day there, not getting home until late but it was worth it. Ellie was happy, so we were happy.

Sunday was Mother’s Day. Those mums in our baby loss community know how difficult mothers day is. Regardless of how many children are living, there will always be one missing. I’ll never get a card made at nursery from him. I’ll never have a mothers day hug from him. I’ll never get to spend a mothers day with him. It doesn’t matter how many living children you have, when one is missing it tarnishes the day. I found not acknowledging it helped, I spent the day cleaning, washing, doing our usual Sunday chores. Luke struggled more so I naturally took on the strong role to help make his day seem easier. The Sunday after Jason’s birthday is always difficult for him and this one being Mothers Day made it harder this year. It sucks.

The following day I found the hardest, I couldn’t function. I couldn’t get out of bed. I didn’t want to either. I spent an hour in bed crying, my alarm went off and I just didn’t want the day to start. I didn’t go to work, I couldn’t. My head wasn’t in the right place at all. I felt just like I did when Jason first died, the world was once again moving on and I wasn’t ready to carry on. I needed another day to grieve for what should have been, for the life that was taken away from us and from him. I needed another day to feel sorry for myself because this year felt like more and more people weren’t that bothered. “It was 4 years ago, surely they should have let it go by now” It’s exactly what I would have thought before Jason so in my own mind this is what people would be thinking too. It’s okay. I get it because unless you have held a dead baby, sat and cried looking at their tiny coffin, knowing they are in there and there is nothing you can do to turn back time and make it all better, then of cause you aren’t going to understand.

Of cause, I have had 4 years of practise now at pretending I am okay with how my life is, pretending that his loss hasn’t left a giant hole in my heart where he should be. For the most part I’m not even pretending any more. Life does get easier to manage, you start moving forward because you can’t stay stuck in the same loop forever. Except when you do find yourself with anniversaries, celebrations, it’s hard to give yourself time to readjust and if you are like me, you burn out. I have felt pretty drained all week however already I am feeling that glimpse of happiness return, the anniversary is over and although I NEVER stop thinking about Jason, missing him, loving him, each day becomes easier to carry on as if i’m not broken slightly.

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, Christmas, grief, life after loss, motherhood, mothering a rainbow, Mum Blogger, mummy blog, parenting, parenting after loss, rainbow baby

December

Posted on by Amy

December has been a busy month and I decided at the beginning of the month that I wouldn’t blog but focus on family, work and life in general as December is always so busy.

December meant the start of this year’s #AdventForJason which has helped create so many memories and given me something to focus on. When Jess (The Legacy Of Leo) set up #Adventtoremember I knew it would grow and that it would be a way of making our own babies legacy known over the Christmas period. For me Christmas has never been hard, as I know it is for so many parents in the loss community, however I do find my desire to make the world remember Jason is heightened over any celebration like Christmas and Advent To Remember certainly helps me fulfil that need.

This December has seen us make lots of memories as a family; visits to see Santa, random acts of kindness in Jason’s memory, donations to different charities and a special Polar Express ride.

This December also gave us illness, with all 3 of us feeling so bad that we didn’t even have Christmas dinner! I pigged out on sausage rolls while Luke and Ellie barely ate anything, we spent Christmas day in our pyjamas resting and just feeling crap. It certainly wasn’t the perfect Christmas I had hoped for but actually it was nice just being the 3 of us and not worrying about having to be sociable or even dressed!

December was as busy as I had anticipated but the memories we made have been worth the rushing around (I was still buying gifts on 23rd December!!)

I know Christmas is a difficult time for most and I really hope it was as gentle as it needed to be for those who do find it a tough time for whatever reason.

Posted in baby loss, baby loss awareness, Baby loss awareness week, Blaw2018, grief, life after loss, motherhood, mothering a rainbow, Mum Blogger, mummy blog, Neonatal Loss, parenting, parenting after loss, pregnancy after loss, pregnancy and infant loss, Pregnancy Loss

Dear Jason

Posted on by Amy

Jason Phillips 💙

You are in my thoughts every hour of every day. I wish I remembered what it felt like holding you, I wish I remembered what you smelt like. I wish I knew what colour eyes you had or whether you had any birth marks. I wish I had taken more pictures, I wish I had one of us. I wish I had dressed you in one of those outfits I spent hours deciding on but would have been far too big for your tiny 3lbs 6ozs body. I wish I had a cast of your hands and toes to hold when I miss you a little too much. I wish you got to meet your little sister and I was able to have pictures of you both together, of our family complete. We will never be complete with you gone. I wish she knew her big brother is the best big brother ever.

 

Most of all I wish I didnt know about baby loss awareness week or that babies die even though everything seems fine because that would mean you were still here.

I would give my own life in a heartbeat so that you could live yours.

Posted in A Life Without Down Syndrome, baby loss, baby loss awareness, Baby loss awareness week, Blaw2018, grief, life after loss, motherhood, mothering a rainbow, Mum Blogger, mummy blog, parenting, parenting after loss, Pregnancy, pregnancy after loss, pregnancy and infant loss, Pregnancy Loss, stillbirth, telford, Wave of light, Waveoflight

BLAW 2018

Posted on by Amy

Wow what a whirlwind week of emotions it has been. It has been amazing to see so many people raising awareness as much as they possibly can, especially when some of those people are ones who have supported me and welcomed me talking about Jason.

This week there has been so much discussion around baby loss, in parliment, social media, radio and on TV and it has been a long time coming! There is still so much taboo around baby loss however I do still feel like most of the conversation has been around stillbirth and miscarraige and once again neonatal loss is widely overlooked. Jason lived, he was not stillborn and there is still so many unanswered questions about how babies suddenly die after being born alive that isnt researched and I feel strongly that the baby loss community can be very split in terms of how babies die.

Ive not felt like I can join in with this year blaw as much as I would have liked, ive been amazingly busy with work and life in general which has meant my mental health has taken quite a hit; which has meant grief has come along for the ride and I have found myself feeling much lower than usual. As a result I have had to take a step back and think about what is important for me and my family at this time and knowing I am going through another wave of guilt and grief is enough without trying to support everyone else too.

Tonight is #waveoflight and I have lit my candle for Jason, my tiny little twinny bean and all the other babies who sadly are no longer with us.

20181015_185824

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

My Journey To Elsie with an Incompetent Cervix

Posted on by Amy

I am so incredibly honoured to share a post written by a wonderful Mummy to her two children. Lauren is one of the Mummy’s I found over on IG who unfortunately is part of our baby loss community. Lauren reached out to me as she felt that sharing her story may help others who might find themselves in the same situation she did.

October is Elsie’s month and to start off her celebrations here is her story ❤

Elsie was born sleeping at 23 weeks. I was told the reason for her being born early was because I have “an incompetent cervix.” And that’s exactly how I felt “incompetent.” My body couldnt even keep my own child safe. Elsie was growing perfectly she had beautiful blonde hairs and even though she weighed just over a pound she was fully formed.

Incompetent cervix means that your cervix has started to efface and dilate too soon. This can cause you to give birth too early, typically between 16 and 24 weeks.

Where did that diagnosis leave me? Feeling an overwhelming sense of guilt. Guilt that she was growing perfectly but it was my body that had let her down, my body that had pushed her out when she wasn’t ready, my body was the reason she wasn’t here and it was the reason I was watching Karl, my partner and best friend fall apart.

I became pregnant with Elsie in May 2015, my pregnancy was straight forward except for hypermeresis gravidrum an extreme form of sickness. At 23 weeks and 4 days on the 29th October 2015 I had just had dinner and settled down to watch tv. I started having period like cramps, within an hour I was on my hands and knees in agony. We rang the maternity ward and they said to come straight down. I managed to get into the back of karls car to lay down and that’s when I knew she was on her way as i felt the over whelming urge to push. I knew it was 3 days too soon to try and save her, I knew that was it.
We were seen straight away at the maternity assessment ward, at first the consultant told us I wasnt in labour, Karl and I looked at each in complete relief. Seconds later she examined me for the second time and she said the words which replay in my mind ever since ” I’m so sorry shes on her way, and she’s 3 days too soon for us to try and save her, we will let the delivery bereavement suite know we are coming.” I couldn’t believe I was being told I had to give birth to my daughter who I could still feel moving and kicking safe inside me, but I knew she would die during labour or soon after.

Elsies labour was 27 hours from that point so i had alot of time to think of the outcome, and guilt was a strong factor throughout. When the time came to push, how could i? How could i push my daughter out knowing when i did it would mean she would take her last breath and my world would end?
The guilt when Elsie was born went through every part of my body. I pushed and screamed and screamed for someone to take her away as I felt I didn’t deserve to hold her, I didnt deserve to be called her Mummy, I couldn’t bare to look at her knowing she would never grow up because of me. I felt like it was all was my fault. After a while I decided it was time to see her, and at that minute I knew i would go through the last 27 hours of torture to see her again. My beautiful little girl, dressed in a lilac knitted dress, a colour that would always remain as hers. For two days we got to hold her, read to her, tell her all about her family and our friends and that we loved her very much.

I struggled for a long time blaming myself, I researched incompetent cervix again and again trying to find something that could have pre warned me or find something that meant I could blame this on. I had so much anger inside.

Planning a funeral brought more feelings of guilt. Planning a funeral for my little girl was something I never imagined I would ever have to do. All the little worries you’ve ever had in your life seem so irrelevant when your handed over the ” children and baby coffin guide” when just the week before you were picking out your push chair. The day we went to the funeral home to say our final goodbyes was the the day when I cried like I have never cried before, a sound I didn’t even know your body could produce, a sound that actually scared me. It’s as if your entire body and soul have been utterly broken, shattered and you can’t see any way that this heartbreak can ever feel better. Your completly stripped of everything you once were and everything you have ever known. Your facing a reality that is most peoples worse nightmare. I remember begging for someone to take me with her, what was life now if I didnt have her with me? For the weeks and months after life became so hard. Both myself and Karl couldn’t listen to the radio in the car, couldn’t watch TV, how can life go on when this has happened? How can I listen to happy music? We had to sleep with a lamp on as the darkness reminded us that out little girl was buried in complete darkness. Was she scared? Every feeling and thought we had was so raw and hurt like hell.

After a while we attended counselling together at a centre which specialises in parents losing babies/children at any gestation or age. We worked through how we both felt and slowly I began to realise this wasnt my fault, it was my body but I couldn’t have ever predicated this would happen and I couldn’t have done anything to stop it. It all happened so fast.

We now have Elsies brother with us, who to us is a miracle from his sister. The feelings of guilt have slowly come back this year whilst I’ve watched Finley grow up, watching all the things he can do that Elsie never can. Watching Finley watch other siblings play together at the park, knowing he has no idea his sister should be there beside him holding his hand.

We try and think that Elsies purpose of life was to bring her little brother safely into the world, we speak about her because we love her just as much as we love Finley.

With Finley I had a cervical stitch placed at 15 weeks and removed at 36 weeks. It wasn’t straight forward at all, my anxiety and panic attacks were pretty much constant all throughout my pregnancy and even now some days when hes poorly I really believe he will be taken from me but this is something I have recently started working on with counselling again.

For anyone who’s going through a diagnoses of incompetent cervix I would say keep going, its not your fault, there’s help out there and in future pregnancies keep pushing to be seen by a premature consultant as without ours I dont know if I ever could have gone through pregnancy again! Make your voice heard as to what you want.

Finley has healed our hearts in so many ways and taken away so many very dark days, but Elsie left a hole that will never ever be filled, her absence is felt in everything we do and I will never stop wishing that my babies were here together doing all the things a brother and sister should do. xx