My dearest Aoibh

Ever since you left us I have hoped that you would show me a sign, anything that would let us know that your spirit still exists somewhere and is keeping an eye on us, gently guiding and reassuring. What I wanted most of all was to see you in a dream. I imagined that in that dream we would be doing all the things we didn’t get to do; sleepy mornings together, walks and games in the park, cuddles at night.

I can remember in the early days someone said to me ‘I suppose you are dreaming about her all the time’. I wasn’t and it made me angry. Angry at my own consciousness for not allowing me the relief of seeing you again, angry at myself that maybe the fact that I wasn’t dreaming about you meant I didn’t love you as much as I should or that I was less of a mother. In my most warped days I was even a little angry at you, that in some ridiculous way you had made a decision not to appear to me in a dream.

I then read that some believe that loved ones do not appear in dreams in the early days of grief as it would be too difficult and our minds are protecting us from being re-traumatised. This gave me a little comfort and I told myself that you would appear when both you and I were ready.

A few weeks ago a received a letter from you in a dream, it was short (not like my own long ramblings to you) and it told me that things would be ok. I wondered whether a letter was all that my mind would allow me to have. But then a few nights ago, completely unexpectedly you arrived. It certainly was a strange dream and some would say it was sad, reminding me of all I lost and could not get back, but to see your face and see the smile that I will never get to see meant everything to me.

Life has been busy recently, I have done a few days at work and for the first time in a long time I have had to actually put things in my diary again. All these things are open to interpretation but I choose to believe that the dream was reassurance that grief and ‘normality’ can sit side by side, that it is ok to keep going and pushing forward to find my new normal.

I suppose this is just a very very long winded way of saying thank you, thank you for showing me your smile and letting me know that you are ok, what a wonderful gift.

All my love

Mum xx

My beautiful Aoibh

When I last wrote to you I felt that perhaps it was going to be my last letter to you, that finally having the answers from those who had looked after you was maybe a natural end. I did not expect it but I have really missed writing to you and as Christmas has approached the urge to write to you again has become stronger.

A lot of people have talked to me about how difficult Christmas would potentially be but to be honest the run up to it hasn’t been too bad. Thinking about it now I realise that, unlike most other parents, we did not get the opportunity to dream too much about your first Christmas and I wonder if that has helped in a weird way. From the time we found out that you had TGA this Christmas became uncertain. We did not know if we would still be in hospital or we would be lucky enough to have you at home. I don’t know about your Dad, but I don’t think I once let myself dream of what Christmas 2018 could be. When Christmas Day arrived I felt your absence like a sharp pain in my heart. I woke early and like dozens of times before your Dad held me as I cried and thought of you. I have found that I miss you most in the small moments, on Christmas Day my heart ached as we went for a walk with family and my hands felt empty. I should have been pushing a pram, tucking a blanket around you to keep you warm, looking at you warm and cosy and thinking about how lucky we are to have you. All that said I will not look back at this Christmas and think of pain, I will only think of the love of family which surrounded us.

I can’t believe that it is now nearly 4 months since I last touched your skin. As I sit and look back at the year that was and wonder what 2019 will be, I can’t help but think of all the things that I have both lost and learned since we said goodbye.

You have taught me so much, I have learnt that grief is my companion for life but that it can be the thing that pushes me forward and ensures that I embrace all the good days, rather than holding me back. I have also realised that I can face things that I never thought I could. When I first lost you one of my immediate thoughts was that I could never return to work, I thought I would never be able to face the place that when I last walked away from it I was dreaming of a completely different future. But yet here I am preparing to dip my toes back into work in a few short weeks. Most importantly of all, I have learnt that the love of family and wonderful friends really can get me through anything.

For now, the list of things that I feel I have lost still seems a lot longer, but the one that I keep thinking about at the minute is my laugh. When I was pregnant with you I became aware of a slight change in my laugh, it felt that it was coming from a different place, deeper within me. I wonder now if it was a laugh of contentment, a laughter that came straight from my soul. I now sometimes catch glimpses of myself when I laugh or smile and can see that the sparkle has gone, that for now it is missing.

I have no idea what the next 12 months will bring, I’m not brave enough yet to dream of what could be, but I am determined to try and find my sparkle again and search for that laugh. I long to hear it, and when I do I have no doubt that it will have been you, quietly working behind the scenes to give it back to me.

Forever yours

Mum xx

My beautiful Aoibh

On Monday your Dad and I made the journey to Dublin to meet the team that looked after you. As with everything my mind was completely spilt between wanting to find the answers to my questions and being terrified that I would not be strong enough to listen to those answers. I have no doubt that you heard me plead with you a hundred times to be by my side during that meeting. I knew before attending the meeting that nothing that would be said would make this any better, but I was so scared that something would be said that would make this all worse, that they would tell us that a mistake was made or that if some small thing had been done differently then you would still be with us.

I truely believe that your short life touched every person who sat in that meeting, I could feel it as soon as I sat down and I knew without a shadow of a doubt that they fought hard for you and that they, as much as anyone, had desperately wanted a different outcome for you.

My one aim going into that meeting was to leave it knowing your story fully and thankfully I can now say that I know that. I now know that you struggled as soon as your cord was cut and that the hole in your heart shut almost immediately resulting in a lack of oxygen going to your brain. I now understand that this is extremely rare and could not have been anticipated. I also now know that there were difficulties with your lungs and because those issues had to be fixed this delayed your transfer to the children’s hospital. I think everyone in that meeting wondered if things would have been different if the cardiologists and their equipment had been a corridor away, rather than an ambulance trip away.

I always knew in my heart that you fought as hard as you could for as long as you could and this was confirmed when I was told that for a short time you rallied, the function of many of your organs started to improve, but ultimately the damage done to your brain in those first few minutes of life meant that your brain became too tired to continue on and so sent a message to the rest of your organs to also start to shut down.

I have to be honest and say that it was like a dagger to my heart when I was told that since Belfast started transferring babies like you to Dublin for treatment 3 years ago, you are the only baby who has died.

It would be easy to spiral into the painful world of asking the unanswerable questions as to why it had to be you, why it had to be us, why we have been given such a heavy burden to carry. However, when I first started writing to you I promised I would do all I could to find any specks of light and push towards positivity. As I sit and write this now it is hard to feel anything other than pain, but I know I will use this pain to push for a potential different outcome for another family. Whether that be raising money for the children’s hospital, raising awareness about your condition or even telling your story to highlight the need to push forward with the planned new hospital that will merge all the services and ensure that in the future the cardiologists and their equipment are only a corridor away.

I don’t know why I was given this path to walk, but I do know that if going back and changing our story meant that I never met you at all, I would choose to live those 2 heartbreaking days with you a thousand times over.

I have no doubt that there are more challenges to come my way, and maybe even harder days, but I am glad to be able to say that, with you by my side, your father and I were able to sit with those who cared and fought for you and together we were finally able to complete your story.

Forever yours

Mum xx

My dearest Aoibh

Today has been a busy day, busy is good but it is also exhausting and I’ve come to realise that it has to be balanced by quiet moments.

I met with friends which was so lovely and then on my way home I decided to (finally) part with my maternity notes. As I walked along I allowed myself a moment to think of the first time I walked those steps full of nervous excitement. I dropped the notes off in the place where I felt that you and I properly started our journey together- the hospital where I had my 12 week scan, where I saw you for the very first time and watched your beautiful heart flutter on the screen and my world completely changed.

Tonight for the first time since we said goodbye I am staying at home by myself. It is not lost on me that in an parallel universe I should be feeling anxious that your Dad has left me to look after you alone for the first time. Instead I am anxious about coping just looking after myself.

It has taken time but I realise now that the person I was before you is gone, I am no longer her. I know this to be true in so many ways but particularly tonight I am aware that before you I had no problem staying at home by myself while your Dad worked, in fact I quite enjoyed it. I watched rubbish TV and pottered around the house, fully content in my own company. Now, it has taken me 2 months to work up to being by myself overnight again, I had to set it as a goal, had to slowly work towards it and try not to fear it.

A very wise doctor told me that I would never get over losing you but in time I would learn to grow around it. I think I am only just beginning to learn that what really means.

The only way I can describe myself without you is like a jigsaw with a missing piece. It doesn’t matter how much time passes between doing the jigsaw, and it doesn’t matter how many different ways you try to put it together again. You might not even notice that a piece is missing until you look very closely, but it is and the jigsaw will never be complete again without it.

Still, with all this said I promise I have not lost my hope, and although the experience of you has completely changed me, I know this new me is stronger, more resilient and ready to learn to embrace whatever is to come.

Now to go and eat a packet of biscuits as I binge on ridiculously rubbish TV!

Forever yours

Mum xx

Dear Aoibh

For some reason, probably because talk has now turned to Christmas and the New Year, I have found myself thinking a lot about where we were this time last year.

It would be all to easy to say that 2018 has been an awful year and to long to be free of it as soon as possible. However this isn’t true for me because in 2018, in finding out that I was going to meet you, all my dreams came true.

To be honest this time last year things were hard for your Dad and I. We were stuck somewhere between England and Ireland. I had moved over but we hadn’t sold our house in Newcastle, we hadn’t found somewhere to settle in Ireland and your Dad was working in Scotland! All of this was compounded by my growing fear that maybe I wasn’t meant to have children, that maybe it wasn’t in the plan for your father and I.

Towards the end of the year I finally felt that things were beginning to change. We got an offer on our house, we found a house in Belfast and then, in early 2018 we got the greatest gift of all, two small blue lines that told me that our lives were about to change forever.

I had dreamed so many time of how I might tell your Dad that I was pregnant, in the end I couldn’t contain my excitement and told him as soon as I possibly could. I can’t remember a lot about that conversation apart from the vivid memory of telling your Dad that 2018 was going to be our year, the best was yet to come.

Yes, 2018 will undoubtedly be forever connected to memories of pain, loss, hopelessness and fear, but it is also the year that gave me you and in doing so allowed me to feel love like never before.

No one knows what is around the corner, and who knows what the next 12 months will bring for your father and I, I can only promise you that I will continue to battle through this fog of grief and try and embrace the brighter days as I know they come from you.

Forever yours

Mum xx

My beautiful Aoibh

This morning your father and I finally registered your birth and death. I have to be honest and tell you I have been avoiding it. The hospital sent your death registration form to me weeks ago but in the interim I have found a multitude of reasons why I couldn’t register you just yet.

In retrospect I think the thought of it was worse than actual doing it. I got very little sleep last night and wondered if I would be able to get through the morning and prayed hard that you would stand by my side and give us the strength we needed. Thankfully the office was quiet and the process simple, just a few short forms to complete. I don’t imagine there are many things in life more painful than registering a birth and a death within minutes of each other but that was our reality. The registrar was gentle, she did not rush us and seemed to understand the importance of ensuring that every single small detail was correct. She asked about you, but also chatted about the weather, working hard to make us feel as comfortable as possible.

In order to prepare myself for today I found myself looking through your memory box last night. People talk about the things they would grab if their house was on fire, for me your memory box would absolutely be at the top of the list. It is so precious and contains so many special memories. It contains your hats and socks, your hospital bands and the booklet we read through during your christening. It even has a lock of your hair and prints of your beautiful hands and feet.

I wish with all my heart that I could have the opportunity to put more in that box over time, your first tooth or first pair of shoes, but I know that in reality your birth and death certificates are probably the last things that will be added to it.

Despite all the pain of today, I am glad. I am glad that there is now an official record of your life, and it’s nice to think that maybe in many years from now someone will find that record and think of you.

I hope I don’t have to face the prospect of registering another death for many many years to come, but I’ll continue to keep my fingers and toes crossed that maybe I will get to register the birth of your brother or sister at some point in the future. If or when that happens I promise I will carry you with me in my heart and will make sure that your sibling always knows your story and maybe your memory box will be as precious to them as it is to me.

All my love, forever yours

Mum xx

Dear Aoibh

On Thursday we were given a date to go back to Dublin and meet with the team who looked after you and talk through everything that happened between your birth and death and hopefully fill in the gaps that we currently have.

I had been eagerly awaiting news of this date. I suppose I feel that life is almost on pause until this meeting takes place. I feel that I know and understand 80% of what happened but without that last 20% I can’t confidently tell people your whole story and I owe it to you to be able to do that.

I thought I would feel relieved when I was given the date, but when I was told I felt my body fill with a level of anxiety I haven’t experienced before and I felt as though I was suddenly going backwards. I am worried about what will be said, I’m worried that we will be told that something could have been done to change the course of your story, I’m worried that I am going to be told that I didn’t look after you well enough when I was pregnant. I am worried that I won’t be strong enough to cope with the information, whatever that will be.

Since being given the date I have found myself wondering what it will be like to go back to that hospital and meet all those professionals who cared for you. Will it bring us comfort to be in the only place you knew or pain that it was the only place you ever knew.

I can’t help but think of my final moments in that hospital when I walked through the corridors with you in my arms, on the start of our journey home. I remember thinking that everyone we passed probably assumed that I was an upset mummy carrying her sick baby in her arms. Strange as it sounds but I feel happy when I think of that long walk. For a brief moment I was just a proud mum holding and comforting her new born baby and the world was unaware that our world had just fallen apart, and in that moment I could pretend too.

I suppose regardless of the outcome of the meeting we are still in the same situation, nothing that will be said will change our painful reality now. But with everything the only direction I have is forward, and I will continue on that journey in the knowledge that you will always be by my side.

Forever yours

Mum xx

My dearest Aoibh

On Sunday your Dad and I gathered with family to mark that it has been just over a month since you left us. I didn’t expect to find it as tough as I did. I think it just brought me right back to that moment, being in the same chapel, surrounded by the same love of family and friends, listening to the same wonderful priest speak your name.

It always takes me by surprise when I think back on our time with you and new memories pop into my mind, I can’t believe a life so short could yield so many precious memories. There are definitely ones that I would prefer to forget, such as when your Dad and I were first told just how ill you were and the likelihood of having to make extremely tough decisions in the days ahead was high, or being woken from our sleep to be told that we needed to be with you as the end was near.

Thinking about it now I don’t think I would erase those memories as they are also an important part of your story. Even in those darkest moments you gave us gifts. It’s not every baby that has their christening at 2am in the morning, and that for me made it even more special.

You even gave us the gift of time. You gave your father and I time to hold you, kiss you and tell you how much we loved you, and when I thought I was going to collapse with exhaustion but did not want to leave your side you seemed to make the decision that you were not ready to leave us yet. I watched your monitors as your stats seemed to stabilise and we were told by the staff that it would be ok to go and rest. I really feel, stupid as it may sound, that you allowed us a brief moment to sleep (restless as it was) as you knew that we would need all our strength for the coming days.

That rest allowed me to be strong when I watched your monitors once more as those vital numbers got lower and lower. That rest allowed me to listen to the information given to me by lots of professionals and understand what was to come in the next few hours, and that rest allowed me to hold you tight in my arms as the doctor and nurse ever so gently turned off each machine in turn and I had the gift of holding you as you quietly fell asleep in my arms.

I look back at the many many photos taken during our time together and I can almost feel the warmth of your body, hear each of the monitors beep around you and can see exactly where I was when each photo was taken.

I feel like I am now moving into yet another stage of my grief. The pain of losing you is not as acute or intense as it was but with that I now fear that in time those memories that are so real to me as I write this will start to disappear. I’m not sure what I can do to stop that from happening, and maybe in time some of those memories will fade, but I promise that regardless of what happens I will never forget how much love and light you brought with you into the world, and the many people you touched during a life so short.

Forever yours

Mum xx

My dearest Aoibh

For some reason today I keep think of all the times during my pregnancy when I described myself as ‘lucky’.

I felt lucky at your 20 week scan when the radiographer made the decision to refer to cardiology even though she said it just a precaution as you kept wriggling too much to allow her to see 100% of your heart. I felt lucky that your Dad insisted on coming with me to the cardiology appointment when I wanted to go myself as I was sure that the doctor would tell us that all was ok. I especially felt lucky that the cardiologist spotted your heart defect despite your determination to make it as difficult as possible with constant wriggling and moving away from the doctor’s touch.

Following your death I ridiculed that old me, so naive and stupid to consider myself as lucky when I felt like the unluckiest person in the world. I felt that all those previous experiences of ‘luck’ were utterly irrelevant as ultimately the outcome which I thought we had managed to avoid through early detection of your diagnosis still came to be.

Thankfully that fog of negativity has lifted slightly. As I sit and reflect now, and although it would be all too easy to describe myself using a multitude of words other than lucky, I think the description still stands.

I feel lucky for having met you, for having two precious days with you, and most importantly lucky that you chose me to have the privilege of being your mother and bringing you into this world.

Forever yours

Mum xx

My beautiful Aoibh

Today is Pregnancy and Infant Loss Remembrance Day which marks the end of Baby Loss Awareness Week. Your Dad and I marked it by attending a Wave of Light event where we lit a candle and spent a few moments with other parents remembering you and all the other babies taken too soon.

I was overwhelmed by the amount of people who were there, mothers, fathers, aunts, uncles, grandparents, so much sadness in that moment. If I am completely honest I am annoyed and disappointed in myself today. I am annoyed that it has taken my own pain to be fully aware of this pain in others before me. Before this year I was not aware of Baby Loss Awareness Week and all that this means. I wonder if perhaps I chose to ignore it, ignore a topic that is too sad to even consider it as a potential for myself or others. I suppose pregnancy is all about positivity and no one really wants to be reminded of the alternative.

When I was pregnant every person to whom I spoke regarding your heart condition spoke about all the positive stories, of all the odds in our favour, of all the successful heart surgeries. We were shown the hospital ward that you would be on following your heart surgery and the ward you would be on when you were well enough to be moved to a hospital closer to home. Only moments were spent showing us the Intensive Care Unit and the low likelihood of you spending any significant time on that ward was stressed and reiterated. In reality you spent the majority of your short life on that ward and never got the chance to even see the others.

I know the risks were definitely implied when doctors would refer to the seriousness of your heart condition but the conversation always came back to the need for positivity. Since you have gone I have wondered a number of times if maybe someone should have prepared us more, spoken to us bluntly about the fact that there was a chance we were going to go home without you.

I know in my heart however that positivity was exactly what we needed. It was that positivity that allowed me to daydream about what your life would be like, what type of person you would be. It allowed me to daydream about how I might announce your birth, detail your progress, announce that we were finally bringing you home. It was that positivity that allowed me to drive to Dublin on 9th September and feel hope and excitement about meeting you, blissfully unaware of the path we were about to take.

I know that every mother to be needs and deserves that same positivity but I also know that every year from now on I will mark this week and in particular this day. For you and for all the other babies who have gone, and I will hope against hope that no one else has to carry this pain.

Forever yours

Mum xx