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

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

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

27th March

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, grief, life after loss, motherhood, mothering a rainbow, Mum Blogger, mummy blog, Neonatal Loss, parenting, parenting after loss, Pregnancy Loss, Rainbow Mummy, stillbirth

Being A Mummy

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.

Posted in 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

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.

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

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.

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

First birthday

And just like that my second child is ONE! I’m not sure where the last year has gone to be honest with you. The past week has been even more hectic than usual and im finally starting to find my feet again and catch up on everything. I had planned to have written three blog posts however none of them have actually happened. So here is how we celebrated our rainbow turning 1.

Continue reading “First birthday”

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

October.

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.