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.
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 idealworld 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.
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.
I have been a mummy for 3 years, 11 months and 15 days and I am learning something new every day.
At first being a Mummy meant I had to adjust to being on my own, with no bump, no little flutters, no life growing inside me and no baby in my arms either. It felt very weird considering myself to be a Mum, even though my body grew a fully-formed 35 week baby. 4 years ago today was Mother’s Day, my first being pregnant and my first as a “mummy”. I remember being completely shocked that hubby had gone to the trouble of getting me a card from my bump and a mother’s day present. I wasn’t expecting anything as even then I didn’t really feel like a Mum yet. I still have my present from that mothers day; a Playstation Messenger bag, it’s tatty, ripped in places and looking rather old but I don’t think I’m ever going to be able to part with it. It is my only proof that I had a Mother’s Day with Jason alive even if he was still cooking away.
The following Mother’s Day was a strange one. I had to “celebrate” it for my own mum, but really didn’t feel like it at all. Luke ended up needing to work and so I was pretty much on my own. No card, no gifts, no recollection of me being a mother at all. Yes people remembered it was going to be a difficult day but once again, I didn’t feel like a Mum. The day after that Mother’s Day I actually found out we were expecting another baby (our rainbow) and realised that Jason had sent me my gift, my second chance of being the Mum I always wanted to be.
My first Mother’s Day with Ellie was a pretty normal day, I didn’t feel like celebrating however this year I did get a card and some daffodils which was perfect. It felt odd for me to celebrate just because Ellie was here, I miss Jason so much that anything where he should be included just feels wrong to carry on with.
We do “celebrate” Mothers Day/Fathers Day but only because I know as Ellie grows up and goes to school things will be made and cards with her handprints will be produced and Ellie will want us to be happy, like all the other parents. I WILL be so eternally happy with anything she makes and brings home because they will be from her but it will always be mixed with a tinge of sadness that I’ll never get anything like this from Jason.
This year’s Mothers Day (UK) falls just 2 days after Jason’s 4th birthday/day he died and I’m not sure how I’m going to manage it. We haven’t planned anything because in all honesty I don’t think I want to do anything. I can’t celebrate being a mum to my children when I never got the chance to celebrate being Jason’s mum or to throw him the 4th birthday party he would have had with his nursery friends.
This year feels very different to previous years, although I don’t want to celebrate it, I feel more like a Mummy to BOTH my children than I ever have before. Ellie is taking an interest in Jason’s picture and saying his name occasionally and that alone is a healthy reminder that he will always be my baby and I will always be his Mummy…just from afar…until one day I can be reunited with him, wherever that may be in the afterlife.
The point I am trying to make from my waffling on is that there is no right or wrong way to deal with these celebrations. Mothers Day can have as much impact on your lives as you want it to. You can ignore it completely like I chose to do in previous years or choose to celebrate the fact that regardless of how many “living” or “dead” children you have, they are yours and you are and will always be their Mum/Dad.
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.
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.
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.
For those who dont know World Down Syndrome day happens on 21st March every year. This is because of the triplication of the 21st chromosome in a person with DS.
DS is very important to me. I am lucky enough to have a younger brother who has DS and I couldnt imagine my life without out. He has made me the person I am because of who he is. I spent my childhood being known to lots of people as Zacks Sister but i didnt mind because to me he was so much more special. Yes he is special but not in the way you might think. His DS doesnt make him special, its just him and he has never let his DS stop him, if anything he has achieved more because of it. I am so proud of him and the young man he has become and I will continue to be proud of him.
My Son also had DS but we didnt know until his post mortem results. I remember worrying that I couldnt conceive and ive always said if I was unable to have my own children I would adopt a child with DS. Knowing Jason had DS makes losing him so much harder. He would have achieved so much I just know, like my brother his DS wouldn’t have stopped him. I spend a lot of my time comparing what Ellie can do to what I think Jason could be doing now, Id be planning his 2nd birthday now but instead all I can do is write about him and celebrate the fact that he too was lucky enough to have Down Syndrome ❤
This week is PAL Awareness week and i have been taking part in their instagram photo challenge via my personal account. Although I have found it comforting doing something that links both my babies it has made me think so much about how little I knew about pregnancy after loss, I was extremely naive.
Right from when Jason died I knew I needed to try for another baby. It wasnt that I wanted to replace Jason, replace my grief it was that Jason needed a sibling to watch over and I needed to know that the world wasnt out to get me. I took Jasons death very personal and couldnt understand why it had happened to me when there were people worse than me who had multiple healthy babies and abused that right to have them. So a baby was needed.
We waited the usual 6 weeks before we started trying, my GP refused to give me a full 6 week checkup as my baby wasnt here (😡) so I made the decision myself that my body, mind and soul was ready. As I got caught with Jason within a month of stopping my contraception I assumed the same would happen this time. It didnt. It took us nearly a year to conceive Ellie, which I know actually isnt very long at all, and from then I started to realise just how difficult PAL would be.
I couldnt enjoy my pregnancy with Ellie, while TTC I was naive in thinking that once I was pregnant Id just be happy with all those pregnancy feelings but it was quite the opposite. It was 38 weeks of pure torture and as we’d decided not to announce our pregnancy publicly I felt very much alone in my journey as I couldnt talk to anyone who had been through loss or PAL themselves. I worried constantly, I had convinced myself that this baby was going to die too, that my body couldnt cope and that I didnt deserve children. The 38 weeks I was pregnant was spent stressed, any bit of happiness I felt when i felt those first kicka were soon gone when I remembered nothing was guaranteed.
I know how lucky I am to have had a successful pregnancy and I have Ellie in my arms but motherhood after loss is just as hard. People expect you to be okay now you have a living child. Im not. Its difficult and I wish every day that I had both my babies here and I was planning a birthday party for my 2 year old. But again, Im not and I dont.
I found PAL so hard that it has made me and my husband realise we cant go through that pain again. We cant put ourselves in that situation where another baby has died and I know this means I wont ever have more children and I am OK with this as I have the most beautiful babies already ❤ But this is how painful PAL can be, it can make you reevaluate everything.
If you would like to share your PAL Journey please feel free I would love to hear how you felt or feel.
As of 15th October Team Jason has walked or cycled at least 340 miles and we are still going strong! Well everyone except me (I’m struggling with getting a mile in at the moment!)
We have managed to raise £225 for Aching Arms which is equal to 22 and a half Aching Arms bear! I feel so amazed that people’s generosity means that at least 22 bears will be donated and sent to so many families who need comfort, especially as it is so close to christmas. I know how much my Aching Arms bear helped me last christmas and gave me some comfort.
I am so incredibly proud of everyone who has helped contribute so many miles, when I started this challenge I wasn’t sure we’d even get to the 100 miles I had first anticipated but was determined to try and get as close to it as possible. Now we’re over 3 times that amount and aiming for 500 miles before the end of the month. I know how lucky I have been to have 9 other amazing people who have helped contribute their miles as I know I couldn’t have done this alone.
So far, in my heavily pregnant state I have managed 35 miles which is nothing compared to what others have walked for Jason.
If anyone reading this feels inspired to raise their own funds for Aching Arms or any other charity i’d love to know about it! Or if you want to find out more the Aching Arms website is on the Useful part of my blog. Or if anyone would like to sponsor us and help get us to 23 bears (I hate the thought of only half a bear!) I would again be so grateful. The link to my Virgin Money Giving site is http://uk.virginmoneygiving.com/team/jasonsfootprints