Jasper Magic

 

 

I will never ever be able to feel that any good came of Jasper’s death, but instead I choose to see all the good his life has brought, and this is something that I’ve needed to remind myself as we approach Jasper’s first birthday.

 

 

I knew the run up to his birthday would be tough, but it has affected me differently to how I had anticipated. Although I’ve always acknowledged that what we experienced was traumatic, I had never felt truly traumatised by what happened. I’ve always thought this was on account of the truly amazing care we had on the day Jasper arrived as well as following his death. The strange thing is, lately, I have felt my subconscious mind and body take over, as if to suddenly make me aware of the enormity of what happened and I have had moments of feeling completely traumatised. I keep telling people that I can’t believe it has been a year, but the truth is that what I have felt is a little different to just feeling that the year had passed by at an unbelievable speed. I have, in fact, at times been transported back to how I felt just hours and days after losing Jasper and have felt as if I were physically there in that moment and that the year gone by had just been a dream. I’ve been present in body but my mind was transported back to the awful time a little under a year ago, and I’ve really felt like I was reliving it. It is in attempt to wake myself up from this ‘dream’ and remind myself that this year has in fact existed and that we have lived it, that I have reflected on everything that has happened this year since the day we said hello and good bye to our beautiful boy. In doing so, I have once again been blown away by all the kindness we have experienced from so many this year.

 

 

Most parents will agree, I’m sure, that when you have a child, your life is devoted to your child, and it is no different for us having lost our only son. Everything we have done has been because of Jasper or for Jasper. There have also been times I’ve felt like fate has lead us to different people or experiences and I call all such moments ‘Jasper Magic’.  Jasper has lead us to some amazing people, taken us on truly magical adventures, shown us some breath taking views and we have experienced so much love and kindness from so many people. All of this, I like to believe, isn’t because he died but because he lived and that is perhaps why we want so much for tomorrow to be a celebration of his life rather than a day to be sad about his death. On Sunday, we will be joined by friends and family to walk the Black Mountains to raise more funds for a charity that is close to our hearts, and for us, that’s the perfect way to celebrate.

 

 

I’ve always said that I’m unlucky in not having a faith in the traditional sense. I respect and admire those who have a strong religious faith and perhaps envy them at times for the strength and comfort it brings them, but it is still not something I can relate to and I have struggled to identify what it is that I have ‘faith’ in. A very kind and wise friend said to me a few months ago, that although he knew that I felt unlucky in not having a faith, he saw faith shining through in what I say and do. He said he saw that I have faith in people, the universe, the nature around us and in the future. I think this has been one of the most powerful things anyone has ever said to me and it has been etched in my mind. So now, I say with confidence that I may not have faith in the religious sense but that I have faith in people and in the love and kindness they show and this year has been a true reflection of that. Every message or kind words we received, every time we received a picture from various locations around the world of Jasper’s name gracing the landscape, the thoughtful gifts and gestures to remember Jasper and all the love and support you have shown us has helped us navigate this journey, so thank you all for the part you have played in that. You have all helped us in your own way and we are ever so grateful. We have been shown so much love and kindness that the pictures I share here are a mere snapshot but they are all things we cherish along with Jasper’s memory.

 

This is by no means the end of the journey and our loss is something we will forever be learning to live with, but we hope that we will forever find moments of ‘Jasper Magic’.

 baby jasper

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The measure of our happiness

Today marks ten months since we said hello and good bye to our beautiful boy and I miss him more than ever.

They say time is a healer, but the truth is, I feel it is getting harder, not easier. To most of the outside world it hasn’t been visible, but I’ve cried more tears in the last month than I had done in quite some time and there has been a heavy cloud or maybe even a fog that has been lingering over me. This wave of grief suddenly and unexpectedly hit me on Jasper’s nine months anniversary, and it has stayed with me for much of this month. The nine months anniversary was a strange milestone. I couldn’t help but notice that in the time he had been gone, a new life could have been conceived and been born, and with that a torrent of emotions came to suffocate me.

In the months following Jasper’s death, I was often surprised at my own optimism and strange sense of hope that had blossomed within me despite the devastating loss we had experienced. I feel that since the New Year things seemed to gradually diminish, then in the last month, I’ve often felt like I’ve been running on nothing. My broken heart seems increasingly delicate, and feels like it could crumble at any minute. In fact, some days it has felt like nothing but a little pile of rubble with no means of repairing it. Fortunately, that state of disrepair has not been permanent, but even on the better days I don’t feel like the person I was, maybe four or five months ago. I look back at things I had been strong enough to do and wonder how I ever managed it, as now, on some days, I seem to be finding the very same things near impossible. I’m finding being around babies and pregnant women increasingly difficult. It has never been easy but it was something I felt strong enough to bare in the past, yet lately there have been occasions where I’ve had to run away from it. I’ve even had to cancel social events because I haven’t been able to face being around people. Looking at pictures of Jasper has always filled me with pride, and it still does, but I find that those emotions are increasingly tinged with a painful sadness. That fact in itself makes me sad as I don’t want the sadness I feel to overshadow the pride and joy I feel of being Jasper’s mum. I wonder whether despite what happened, we were drunk on the joys of finally becoming parents and as the dust settles, the effect of that magic is wearing off.

One of the reasons and I think perhaps the biggest reason for my recent struggles stems from my desperate desire to be pregnant again. Actually, it’s not pregnancy that I long for as the thought of it terrifies me, but I do long for a ‘rainbow baby’; a baby that we get to bring home. I’m finding the longing I feel for having a child to be nearly as painful as the pain of losing Jasper, and dealing with the two together seems unbearable. That together with the mixture of joy and fear I feel towards the prospect of being pregnant makes for a tiring and bumpy ride. I had been quite laid back about the thought of trying for another baby (or so I thought) and at first felt that ‘if it happened, it happened.’ But the honest truth is that I was naïve in thinking I would be pregnant by now. It’s not that I’ve ever been under the illusion that being pregnant again would in any way cancel out the loss of Jasper. I know that would never be the case, but as a couple with no living children, the prospect of never having any is a scarily real one. Now I find myself in this vicious cycle each month of preparing myself for the possibility that I might be pregnant, and just as I’ve talked myself into the idea of being pregnant and that it will be OK,  I then have to deal with the disappointment of not being pregnant and with it I miss Jasper even more.

When you have experienced ongoing issue like we have, it’s hard not to let the quest of having children take over your life. The last three and a bit years have either been about trying for a baby, being pregnant or recovering from a loss. Don’t get me wrong, we have been extremely lucky to have had some fantastic experiences in between it all but on the bad days it’s hard to see past the fog at the happier memories. It’s also hard not to plan your future around possible pregnancies when you have had so many issues. It may be because I’ve felt hopeful, but I’ve felt unable to plan anything too far ahead in case I fall pregnant. It sounds silly I know, but having experienced so many different issues throughout pregnancy, it is going to be difficult to live life as we normally do if I should fall pregnant. I’m just a bit tired of feeling like I’m putting my life on hold for the sake of something that may or may not happen. It’s not that I’ve lost all hope; one of the things Jasper has taught me is how good it feels to have a bit of hope. I just feel like now, I need to strike a balance between staying hopeful and living my life and enjoying what it has to offer. Like most other parents who have experienced a loss, having a rainbow baby is something we strive for and aspire to. Despite knowing that another baby would never replace Jasper, I feel like it has become a measure of my happiness. I know we are very lucky that it is still something we are able to hope for, as for some, there is no option for that hope. I just feel like I can’t let it be something that my happiness depends on. I don’t want to lose hope, but equally I don’t want to rely on it to be happy. It’s not something that is going to come easily, and I think I need to allow myself the time but I almost feel like a weight has been lifted in realising it.

Someone said to me recently that I’ve done so well in ‘just getting on with things.’ I thought I was dealing with things and surprised myself in how well I seemed to be doing at times. Now I wonder whether what I was doing was not facing up to reality. I’m not really sure, but what I do know is, rather than wonder why I’m feeling like this now or feeling like I should be doing better, I need to give myself more credit for surviving the last ten months. When I look back, I don’t know how I managed some of the things I’ve done. It’s only now as the dust settles and perhaps I become more aware of my emotions that I realise how well we have both done. When I consider that, I feel it’s no wonder I’m now suddenly feeling rundown and exhausted. For now, I’m going to allow myself to feel sorry for myself, try and be kind to myself, look after my health and try to find ways to enjoy life for what it is. After all, I have so much to live for and be thankful for. 

 

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Our little Bean

amaryllis

Today marks two years since what would have been the due date of  our first baby I miscarried at 11 weeks. Last year I was pregnant with Jasper and although we acknowledged the date, my heart didn’t feel as heavy. This year, I’m reminded more of how I felt and my heart feels a little heavier as a result. We had lovingly nicknamed the baby, ‘Bean’ on account of him being the size of a kidney bean the last time we saw him alive on a scan.  Over the last few months, I’ve found myself thinking about Bean and what could have been more often. I recently revisited something I wrote two years ago in time for Bean’s due date.

 

‘It seems fitting that our amaryllis should finally flower this week. If things had been different, we would have been welcoming our little one into the world. Today we spent the day on the hills remembering and wondering what could have been, but also trying to look forward to what is yet to come.

 

I never could have imagined how the glimmer of life that was a part of me for just a couple of months could have such a profound effect on our lives. I’ve felt so frustrated that I just couldn’t ‘get over it’ particularly as so many women go through miscarriages. When I considered how many women miscarry even further into pregnancy than I did or worse still, have a still born, I even questioned what right I had to continue to feel so desperately sad. I’ve come to realise that you never do really ‘get over it’. I’ve also realised that you have to allow yourself the time and space to feel all those emotions. You have to give yourself permission to feel all those things. Until you do, it all festers below the surface, blocking all the other emotions, preventing or prolonging the grieving process. While you never forget, you regain strength and hope that allows you to look forward again.’

 

 

I wrote this as a result of finally seeking mental health support after suffering two miscarriages in the space of five months, having had another loss at around 6 weeks, five months after losing Bean. The six months after we lost Bean was a really dark time for me. We had a rollercoaster of a time while pregnant due to issues that arose, then having a bad time with a medical management of miscarriage, combined with my autoimmune thyroid condition deteriorating postpartum, all magnified my struggles. The truth is, I knew I wasn’t coping, but I didn’t want to admit it. On hearing that I had had a miscarriage, so many women offered their stories of miscarriages and followed it with their ‘happy endings’ of falling pregnant soon after and having a gang of healthy children to prove it. It did offer me some hope to begin with, but in my head, in being told how common it was, I felt I was robbed of the ‘right’ to be sad. It’s one of those things, it happens to so many, everyone I spoke to seemed to be able to get on with it. So then, why was it that I struggled so much? It has taken me time to truly process how I felt and why I struggled so much. Apart from the medical factor of a deteriorating thyroid condition which does affect both your physical and mental health, I have come to realise that there were two main factors that affected how I felt.

The first, was the lack of support offered after the loss and the difficult experience we had with the medical management of miscarriage. Shortly after hearing the dreaded four words, ‘sorry, there’s no heartbeat’, we were handed a pile of leaflets to read to decide what we wanted to do. Although I should have been a little over 11 weeks pregnant, my baby was only measuring between 9 and 10 weeks. I had had a ‘missed miscarriage.’ If you’d like to read a bit more about my experience you can read it here https://ourlittlebeanblog.wordpress.com/2016/03/13/in-the-beginning/, but in short, we opted for a medical management of miscarriage. For a long time I did not allow myself to acknowledge that we had had a  ‘traumatic’ experience. Once again, I did not allow myself to believe that on account of it still being an early miscarriage and it was something that you were expected to deal with and get over. But the truth is, I can now see that our experience was in fact a traumatic one due to the complete lack of care we received. I didn’t realise it at the time, but the anger and the hurt I felt towards enduring this experience had had a huge impact on how I dealt with my loss. I am certain that had I not felt so let down and had we been better informed and better supported, I would not have struggled nearly as much as I did.

The other thing that undoubtedly hindered my recovery was the feeling that I was not entitled to my feelings on account of miscarriage being such a common occurrence and due to my losses being early on in pregnancy. I think there is often this idea that gestation is what determines the ‘hierarchy’ in grief and reading what I wrote two years ago, I think I was conditioned to think the same. It is one of the reasons reading what I wrote two years ago conjures up a sense of embarrassment. (That, and the fact I thought I was aware of all the different types of losses you could experience. I was terrified of once again being told that there was no heartbeat. I knew that babies could be born prematurely, but not once did I consider that I could go into labour so prematurely and that my baby would be born alive but would die several hours later.)  I really wish I could go back to tell myself that that gestation does not determine who has the right to grieve. Although losing Jasper at 23 and a half weeks was the worst thing that could have happened to us, it doesn’t make what I felt after my earlier losses any less valid or any less painful at the time and that’s something I want others to understand. I really feel that had I realised that at the time, I would have recovered sooner from our experiences. When you lose a baby at whatever gestation, it doesn’t change the fact that you lose all those hopes and dreams that had been planted within you. I also know that the care you receive at the time of loss has a huge impact on how you cope. In most people’s eyes, what happened with Jasper would qualify as a traumatic experience, but the truth is, due to the exceptional care we received at the time and in the aftermath of our loss, it didn’t feel as traumatic as it could have been. In my eyes, my experience of my first miscarriage was far more traumatic on account of the lack of care we received.

How we deal with loss is such a personal thing and everyone’s journey is unique. There will be people that miscarry and are not deeply affected by it but that is absolutely OK. But equally, if you do struggle, do allow yourself the permission to feel those things. I certainly wish I had done that sooner.

 

clee hill
Taken two years ago when we remembered Bean, in the exact spot we sat again, the day after we lost Jasper.

Time was away when he was here

The 24th of May 2017 was the worst day of our lives and the best, all in one. After all, we met our little boy, Jasper and we finally experienced the joys of becoming parents.

Jasper really was long awaited. We had had a tough couple of years with two earlier pregnancy losses, and my physical and mental health suffering as a result. It had taken quite a long time for me to feel physically and mentally ready to try for a baby again, so when we did fall pregnant very quickly after starting to try, we were happy but also absolutely petrified. I had counselling and was under the care of both the obstetric and endocrinology consultants due to a chronic thyroid condition I have and due to anxiety issues. My anxiety in pregnancy stemmed from having a difficult first pregnancy which ended in a missed miscarriage that required me to have a medical management. That’s a story for another day, but it is safe to say it was a pretty traumatic experience which lead me to have psychological issues which were also exacerbated by my thyroid condition deteriorating post-pregnancy.  However much I thought I was ready to be pregnant again, the fear of losing yet another little soul and the thought of having to experience it all again sadly put a real dampener on my joy; something I really regret now of course. Unfortunately my anxiety was magnified when at nearly seven weeks I started to bleed. It was all too familiar, after our problems in the first pregnancy started in a similar way. To our surprise and utter relief, our first trip to EPU with Jasper, or ‘Passenger’ as we knew him as then, showed that things looked fine and that he was developing as he should be. My nerves were really tried for the whole of the first trimester, as I continued to bleed on and off until we reached the 14 week mark. I lost count of the scans we had but it was the only thing we could do to try and alleviate a little bit of the worry and it does mean that we have quite a collection of scan photos.

As we reached the second trimester, I still continued to be anxious but managed to keep it a little more under control. However, neither my husband nor I could bring ourselves to be too hopeful. While other expectant parents discussed names or even started to buy items for the nursery, all we could manage was breathe a little sigh of relief every time we got another week further. When we went for our 20 week scan and things seemed to be good, I actually allowed myself to dream a little. When we got out of the hospital and into our car, I remember saying to Matt, ‘can I tell you the names I have in mind?’ However brief, I am glad that I remember little hopeful moments like that.

It was just when I thought I had started to relax a little, at 21 and a half weeks that I suddenly noticed I was spotting again. A trip to triage confirmed that the baby’s heart beat was fine and that my cervix appeared to be closed. It was concluded that the bleeding was probably from the cervical erosion I had developed, which they said was more than likely due to pregnancy hormones. They told us not to be alarmed if I had a little bit of blood but to go back if I continued to bleed. At 22 and a half weeks, the same thing happened but this time more blood. After the same routine again we were reassured that it was still due to the cervical erosion and we went home feeling tired but reassured. Then, I reached 23 weeks and things started to happen again. The day before Jasper was born, I felt a little under the weather. I had had the whooping cough vaccination the day before and presumed that was why I felt so bad. When I look back, there were some symptoms that must have been linked to labour but I didn’t recognise them at the time. I also think I had some Braxton Hicks contractions but mistook them for Jasper’s movement as he had been quite a wiggly baby.

 

24th May 2017, I woke up at about 4:30am feeling really uncomfortable with back ache. I told Matt I needed to call triage as something wasn’t right. I called them and explained the symptoms but the midwife I spoke to felt that perhaps I might have a urine infection so instructed me to take paracetamol and a warm bath….. which I did, like a good patient. An hour later the pain had worsened but apparently I didn’t show it, as even my husband questioned whether I really needed to go to hospital! The pain became much more severe on the journey to the hospital, but the strange thing was, despite the severity of the pain, I don’t once remember feeling panicked or thinking I was in labour.

On arriving at the hospital, the pain quickly worsened and I started bleeding quite heavily. I think seeing the blood was the first moment I really clocked on to what might be happening as I remember saying to Matt, ‘This might be it you know.’ From then on, my memory is a bit sketchy and I remember things in snippets. I remember the registrar walking into the room after what seemed like an age, took one look at me and said, ‘I think I better get the consultant.’ I remember the consultant asking me if I could bear having an internal exam and agreeing to it. I remember the speculum being in for a matter of seconds and knowing what that meant. I remember the consultant gently placing his hand on me and saying ‘I know it is upsetting, but I need to take you to delivery right now.’ I remember whimpering and Matt saying to me beside me, ‘We’re going to be alright. We’re going to be alright.’ I remember being rushed down the corridor and seeing glimpses of people and the ceiling as I was carted off to the delivery suite. I remember being handed the gas and air and having to ask what to do with it. At 23 and a half weeks it was too early to attend antenatal classes yet I still had to go through labour. I remember my lovely midwife Steph saying that my body would tell me what to do, and she was right. I also remember asking her how far dilated I was and she told me that the consultant had informed her that I was fully dilated with membranes were bulging.

As many of you will know, 24 weeks is seen as ‘viable’, but different hospitals have different approaches, and I think it is also perhaps down to the consultant in charge as to whether they feel they will offer resuscitation. When the consultant told us he had to rush me to delivery, he also explained that at 23 and a half weeks, the chances of survival were very low. He did however, give us the option of intervention. We could have refused, and they would have simply delivered Jasper and handed him to us to pass away peacefully. We felt we wanted to try and do something to save him, however futile it may be, and we are ever so grateful that we were given that opportunity as I know many aren’t. We felt that if we didn’t try, having been given the opportunity, we would always question whether he could have been saved. I remember the paediatrics team coming in to see us to explain what they would do when he arrived, but I can’t remember a single bit of what they said. I just have the expressions on their faces firmly imprinted on my mind.

At 8:29am, a little over an hour after arriving in delivery, Jasper was born. Neither Matt nor I will ever forgot Steph, our Midwife saying ‘Hello baby, hello baby’ as she cut the cord and hurried to get him ready to be handed over to the paediatrics team. I remember hearing her ask for a bag and thinking ‘Oh god, he didn’t make it.’ What I hadn’t realised then is that they put premature babies is what can only be described as something resembling a little sandwich bag to keep them warm. By this point we were descended on by masses of staff from NICU, all working on Jasper to try and stabilise him and keep him alive.  While the consultant and Steph looked after me and I delivered the placenta, another nurse or midwife (not sure who she was) stood by me and explained to me and Matt what the team were doing. I felt that was a brilliant thing for them to do and so important, as we weren’t left terrified, wondering what was going on. I have no idea how long it was before they started to wheel Jasper out to go to NICU. I remember saying, ‘Can I see him?’ and they wheeled him over. One of the nurses grabbed my hand and placed Jasper’s tiny hand on my finger, while another nurse asked if we had a camera and frantically took pictures for us. How glad I am of those pictures of his tiny hand gripping onto my finger.

little hand

I lay waiting in the silence of the delivery room with Matt by my side in total and utter shock, waiting for news. Soon, Steph arrived with a wheelchair ready to take me and Matt to see our little boy. I refused the wheel chair as if to say ‘why would I need that?’ When I look back, it probably wouldn’t have been a bad idea, but in the moment or shock and in survival mode, I didn’t feel a thing. We walked in to NICU to be told that sadly, despite best efforts, they were unable to raise oxygen levels in Jasper’s blood and that there was nothing more they could do for him. I don’t really remember how I felt being told that, apart from saying to the nurse that I didn’t want to prolong his suffering. She explained that she didn’t think he would be in pain or be suffering. I sat in the chair and she passed me this little person, our son, wrapped in a starry blanket. I know from pictures that he still had all his ventilation tubes in when we first held him, and in later pictures these are removed, but I do not have any recollection of handing him back to have these removed. I remember holding him and looking down at his beautiful little face, trying to take in every little detail. I remember watching him wiggle in my arms and being in total disbelief and thinking ‘Surely he can’t just die?’ While holding him, one of the nurses said, ‘Has baby got a name?’ Having not allowed ourselves to be too hopeful all through pregnancy, we hadn’t decided on a name. All we had to go on was a handful of names I had shared with Matt a couple of weeks before. It is hard to pick a name that you like when you are a teacher as many have been tainted! That was when Matt turned to me and said, ‘Let’s call him Jasper. You liked the name Jasper, so let’s call him Jasper.’ The nurses and consultant in NICU were absolutely amazing, and created a peaceful environment for us while still explaining everything to us clearly. Luckily Matt had called my parents just as I was rushed into delivery, and they arrived in time to meet Jasper and to have a cuddle. I am so grateful that they were able to meet him. I feel he is more ‘real’ in our minds as a result. Staff returned periodically to check his heart beat, and three and a half hours after he arrived, our brave little boy passed away peacefully.

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We have a handful of pictures of us holding Jasper, and in every single one of them all I see is an expression of shock on my face. It is no wonder considering how quickly everything unfolded and how little a time we had to prepare for it, but I am sad because it I don’t think they really show just how calm, peaceful and beautiful our moments together were. We were overcome by sadness yet I remember a clear sense of joy alongside it. Several days after Jasper’s birth, I stumbled across an extract of a poem by Louis MacNeice that seemed to resonate and seemed to capture the essence of the time we had with Jasper. The poem entitled ‘Meeting Point’ was written about a very different moment in life but an extract of it really hit a chord with us. Time seemed to pass at such a strange pace once Jasper arrived and although it wasn’t enough, the time we spent with him was so beautiful and precious, and that it was as if time had stopped. If only we could go back to that moment.

 

God or whatever means the Good

Be praised that time can stop like this,

That what the heart has understood

Can verify in the body’s peace

God or whatever means the Good.

 

Time was away and he was here

And life no longer what it was,

The bell was silent in the air

And all the room one glow because

Time was away and he was here.

                                 (Adapted from ‘Meeting Point’ By Louis MacNeice)

 

 

 

Just a little bit of understanding

 

Monday marks exactly eight months since we gathered with family and friends to say ‘goodbye’ to Jasper, our little boy born too soon and gone too soon. The funeral of your child and how you wish to say goodbye is a deeply personal thing and there is no right or wrong way to go about it. I know there are those who wish to have a small private ceremony, those who wish to have a large congregation, or those who do not feel they can attend their child’s funeral and instead say their goodbyes in private. No one option shows more or less love or devotion for their child. You can only hope that you are able to do it in the way you want to and I feel incredibly lucky that we were able to say goodbye in a way that was right for us. That, for us, meant having as many family and friends as possible with us to celebrate our little boy’s life. Sadly, my parents were the only other people in our lives that got to meet Jasper, and we so desperately wished that everyone else had met and held our gorgeous boy as the four of us did. We wanted to shout at the top of our voices that we had a son, he made us parents, that we still continue to be parents despite his absence and that we love him so very much. Jasper’s funeral was as much about sharing our joy of becoming parents with our family and friends as it was about saying goodbye to him. That may be a strange concept to some but losing our son so soon after birth with no other living children has placed us in a position whereby we feel that our title as parents is often overlooked, challenged or questioned by others. I must add that this is usually done unintentionally but I cannot explain just how painful it is to not be acknowledged as parents.

We have been incredibly lucky to have amazing support from friends and family who continue to help us navigate life after loss, but there have been several occasions where I have found myself having to justify my feelings to others. I’ve always known and tried to understand that it is difficult for others to imagine what it is like for you and that most people are well-meaning.  I’ve tried my best to explain myself when I have felt able to and to understand that no harm or hurt is intended in most cases but I’d be lying if I said I haven’t felt deeply hurt by other people’s misconceptions or lack of understanding at times. I would also be lying if I said I hadn’t felt that I shouldn’t have to explain myself. When you are so very hurt and grief-stricken it is so difficult to have the energy to explain and you don’t always have the strength to make sure your voice is heard.  Everyone’s journey is different and people deal with the loss of their child in different ways but I have found that my experience, emotions and thoughts are shared by so many others. I feel like, now, as I begin to feel a little stronger, I am able to speak a little louder and might be in a position to have my voice heard and hope that maybe that will help people gain a better understanding of what it means to be a grieving parent and that, in turn, will help other grieving parents get the support and understanding they need from those around them.

Some of you reading this may not be aware of a little corner of cyberspace that is the Instagram baby loss community. I stumbled across it accidentally just when I needed it, around three months after we lost Jasper. We had just received the long awaited test results which we hoped may shed a little bit of light on what went wrong and perhaps give us a little hope for the future. Although I had hoped to find some answers, I thought I’d also prepared myself for the possibility of getting no answers. The reality was, that we did not get any real answers, and I wasn’t as prepared for hearing that as I thought I would have been. I turned to cyberspace in search of other mothers who had experienced the loss of their child as a result of going into preterm labour. I wanted to know whether they had been given the same seemingly unsatisfactory answers that we had been given in the hope of reassuring myself that we were not alone in how we were feeling. I did in fact find several mothers with similar stories to ours and I did find comfort in knowing that. I thought it likely that social media would provide me with the opportunity to contact others with similar experiences but I had never anticipated finding the huge community of parents who find refuge in a corner of cyberspace which seems relatively hidden and ‘protected’ from the rest of the world. It is an amazing platform where parents who have experienced the loss of a child or children under varying circumstances, unite in their grief and love for their children. It is a ‘safe’ place for people to off load their feelings, to speak frankly about their experiences and to share their love for their child or to just say their names. I have found so much comfort in knowing that there are others out there who know what you are going through and that are not shocked by what you have to say. Life after losing a child can be a lonely place and I’ve felt lonely and isolated at times and finding this virtual community has helped alleviate some of that. However, I’ve felt for some time that it is also sad that many of us have to retreat to that corner of cyberspace in order to feel safe enough to pour out our hearts or even just to talk about our children.

I’ve spoken before about how uncomfortable I feel about being told that I am brave for sharing my story and to want to talk about Jasper and I think me wanting to write about it all stems from that feeling. I feel uncomfortable by the concept of being ‘brave’ for talking about your child, because really, the only reason we feel we have to be brave is for the fear of being hurt by the world’s reaction. As parents, wanting to talk about your baby and celebrate them is the most natural thing. You may not see our babies but we carry them in our hearts and we are no different to any other parents in many respects. We want to share our love for our children with the world and celebrate them but sadly we are often deprived of that opportunity.

One of the first people I spoke to on social media through Sands (the stillbirth and neonatal death charity) said to me that ‘we are all a part of this club that we never wanted to be a part of.’ I want to help others that find themselves in this ‘club’ but I feel that sharing my experiences with them isn’t the only way I can do that. I want to share our story as a way of reaching out to other bereaved parents and helping them feel less alone, but I also have a strong desire to share my story with the rest of the world, with the people who are lucky enough not to have had the utterly devastating experience of losing their child. It is not pity or sympathy I want, and I certainly don’t wish to make people feel guilty or uncomfortable. I just want to promote an understanding for people who navigate life as a grieving parent in the hope that they are given the best support possible from the people around them. My hope is that in sharing our stories, perhaps the world will gain a better understanding of what it means to be a grieving parent and fewer parents will have to be ‘brave’ to celebrate and share their love for their babies with the rest of the world.

The truth is, I feel that being heard outside of the baby loss community is that much harder. It is not a pleasant topic to talk about, but unfortunately it is the reality for so many people and I need your help in having our voices heard. The sad reality is, at some point in your life it is quite likely that either you or someone close to you will experience the loss of a child in some shape or form. If you could listen to our stories and try to understand, it might help you help someone one day. One seemingly small gesture from you could have such a profound impact on a grieving parent and make their agonising journey just that little bit more bearable.

The day after we said hello and goodbye to our beautiful boy Jasper, was spent in a daze of shock and disbelief, not knowing what to do with ourselves. Despite not wanting to face the world and me feeling dizzy having only given birth the day before, we ventured out on that sunny evening to a spot on top of a hill with beautiful views. I remember very little about our car journey their apart from having to open the window and putting my head between my legs to try and prevent myself from passing out, while my husband braved walking into a shop to buy us something to eat and drink! When we eventually made it there, we sat next to each other, watching the sun go down, taking in the beauty of it all. We waited for the first star to shine but it was in fact Jupiter that first made an appearance.

Jupiter for Jasper.

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