Their was a Wave of Light on Sunday night and it was lovely to be a part of it.
There are amazing charities and organisations out there who provide candles to families and individuals to light during this Wave. It took place at 7pm on Sunday, October 15th. We lit a candle for Patrick and I also lit one in Patrick's grandparents house. That got to me a bit. To explain to people what the candle is for and to light it is very emotional for me.
Unfortunately, lighting a candle is the only thing that I may do for Patrick on a daily basis. I started lighting a candle for Patrick on the six-month anniversary of his birth. I remember talking to a counselor and I was inconsolable. I do not know how he managed to understand what I was saying. You see, six months for me was a significant number, but to everyone around me it was just another day. It was an insignificant date on the calendar and this was extremely difficult for me.
I remember crying to this counselor because no-one was mentioning Patrick. No-one had planned anything for him. And he said something to me that I still hold dear: "why do you need other people to speak about him first?" What he was saying was, if I wanted to do something to honour Patrick, why did I feel like I needed permission from other people to do that. Why was I waiting for other people?
This flicked a switch.
The tears dried slightly and a weight was lifted. I went home and lit a candle for Patrick and I have been doing it everyday since. I like the physical act of doing something for Patrick, of having him included in my daily routine. It is only small, but it is something.
The Wave of Light brings this candle-lighting activity full circle. My everyday activity is amplified to become part of a worldwide movement. I love being part of this Wave; but it is heartbreaking to think of all the families lighting a candle. The loss is huge - literally and figuratively.
For those who took part in this Wave, I hope you found comfort. I am sure that all the babies were lighting them with us.
Another week is over. Another week has started and who knows what it will bring...
Before Patrick was stillborn I, along with most parents who experience the tragedy of baby loss, had never heard of Sands, or Feileacain, or any other baby loss charity. I had never heard of Wave of Light or Baby Loss Awareness Week, or any other awareness event. When I think of all the things I had never paid attention too, all the turmoil which other people were going through... Shocking.
Before Patrick died I was not on this path at all. Now my days are filled with loss and grief and bereavement and offering support to families going through the trauma of baby loss. How things have changed. Do you know that my twitter feed (@Maguire_HopeAG if you wanted to know) is full of baby loss charities and grief and bereavement and mental health and rainbow pregnancies...? You get the idea.
Now my days are filled with making sense of what has happened, and continues to happen after the event, and how to support other people going through it. Now, my life is dedicated to trying to improve the support and help which is available to families. How life has changed.
Baby Loss Awareness Week affects me at either end of the emotional spectrum. I am truly grateful that there are awareness events available for my family and families around the world. I am grateful that I am given the opportunity to talk about Patrick and remember him when so many other people are silent. But, these events make me yearn for him more, if that is possible. And, sometimes, I wish that this was not my life. I wish that I did not need to participate in these events. But, I do.
I honestly cannot believe that it is over for another year. Was there anything in your area? Did you get involved? I applaud all those who organised the events and dedicated their time to my family and other families around the world.
In January this year I sat down and made some goals for the year. I know. Do people still do that? Really Suzanne??? Well, yes, I did.
You see, no-one tells you that time does not always heal. To be honest, this year has been the one with the most upheaval, the most confusion, and I suppose, the most darkness and tears. The first year is all, 'I don't know what is going on'. The years after are the realisation that this is it, well it is for me anyway. I can change how I celebrate dates and I can change how I talk about Patrick, but that is all that I can do.
I needed something to work towards, so I made some goals. I knew that this would give me direction, allow me to put on paper what I wanted to achieve, and give me something to look back on when the going got tough and I thought that nothing was working. And, you know what, all these things have happened.
Professionally, what I wanted to focus on was this - the blog and talking about what life is really like after loss - and I wanted to move forward with Patrick and doing things for him in his memory. I also wanted to talk about pregnancy after loss. After having gone though a 'rainbow' pregnancy, it is an absolute minefield. Without a doubt. And, there is little support or understanding around the heightened emotional and mental health needs of women and their families.
Had I not had goals written down, I would probably still be flitting around. I would still be lost and stumbling and becoming increasingly down because I felt like I was not doing anything. Without goals written down I would not have put myself out there a number of times.
One of those times was applying for a grant with the charity, Change Your Mind. I wanted to raise awareness of the emotional and mental health issues during a subsequent pregnancy. I got a grant, which is a brilliant achievement in itself. This grant, and what I said I wanted to do, gave me something to do...! And, it fitted with what I enjoy doing - research and writing. Lovely! It was a breath of fresh air; my head surfaced.
So, over the last few months, I have been working. Thank goodness! I made a flyer and there are plans for a publication also. There is a picture of the flyer above (not a great photo, but awareness does not call for perfection). So far, they have been earmarked for England, Australia, and Ireland. The response has been amazing.
I am proud of this flyer. It feels like a huge milestone. It feels like the flitting with, 'what I am doing?' and, 'how can I make Patrick proud', has paid off. It is an achievement. I suppose, what I am trying to say is this: I cannot change what has happened, but I can do something different with the situation that I am now in. Life is not the same; I am not the same. Patrick dying is not positive, but I can try and do positive things from it.
If we start small and take tiny steps through the grief and sadness, we can make our way out of the dark. If we put one step in front of the other, we can make our way towards the light. We just have to start. No-one can do it for us.
Hello. Long time, no contact.
I am just back from a lovely break in England. The family and I toured about in a caravan and it was lovely. The weather was mild and sunny and we visited a lot of National Trust places. There is some amazing scenery and sites. But, now it is back to reality...
Before the break, I attended the ISA (International Stillbirth Association) Conference in Cork. Now, I must say that I do love a conference. I love people coming together, and I love the academic side of it. I love hearing about research going on and what other people are thinking about topics that are close to the heart. I never did think that I would be attending a conference about stillbirth, but hey, that is how life has gone.
I went with Sands NI and it was great to see so many charities and people from different organisations there. We are all there for the same reason.
Some things that amazed me about the conference:
My intentions after the conference:
So, this is where I am going. There will be information through my organisation, Hope After Grief, which you can find at:
And, as always, Patrick was very much present during the conference and throughout the holiday. It was Shay's 4th birthday yesterday also. I lit a candle for Patrick before Shay blew out his candles so that the whole family was together...
Last Friday, I, and Steven Guy, the co-ordinator for SandsNI, visited a Minister to talk about holding a Christmas Carol Service in Fermanagh. You have to get in early!! It was welcomed very positively, which is fantastic.
I know it is too early to be talking Christmas (although planning for a Christmas Carol Service next year is already underway!!), but, I cannot wait to attend a Christmas Carol Service. It will be special because it will be catered to parents who are missing a child; parents of children who are no longer here. And, not just parents. Grandparents, Aunties and Uncles, Godparents who never got the chance to step into the role, or other people in the community who want to come and lend support to people they know who have lost a child. But, of course, everybody is welcome.
I have looked over the order of service and I already know that I am going to shed more than one tear. The readings are emotional. And, I think that they are more emotional because of who they are about and aimed at. How am I going to 'hold it together'?
You know how? I am not. I cannot wait. I always think releasing all the pent up emotion is good for the soul. I think it is a huge relief to get it off the chest. And, I think that it is extremely beneficial, mentally and emotionally, to let the grief out. Just let it out. Sometimes we do not show emotions or let the tears out because we are worried about how other people will feel. Maybe they will be uncomfortable seeing me cry?
But, you know what, it is not about them. It is about you. It all comes back to you and your baby. It all comes back to me and my baby.
This Christmas Carol Service will be the icing on my year. I hope that other people will come and celebrate the babies that are no longer with us. Christmas is a special time of year, but it is also extremely emotional. The whole idea of Christmas does not really fit in with Patrick not being here - so much happiness and anticipation alongside grief and sadness and loss.
But, I can make happy memories around Patrick, even if he never got to celebrate a Christmas. This is what the Service is about. Patrick will finally be able to be apart of Christmas. A whole evening for him, and all the other babies that he is playing with.
Like I said, I cannot wait! Will you join me?
This is a first, I must say. I am feeling a lot of love at the moment. I think I have turned a corner somewhere - or maybe the sadness is on holiday for a while...?
No, I will choose to think that I am turning a corner. I do not know what I will see around this corner, but I need to turn it. I can never leave what is behind me, but I need to move forward. I need to turn down this road and acknowledge that it is totally different to where I have been for the past... I have actually just searched how many days it has been since April 21, 2015. It has been 868 days. Can you believe that? 868 days since I said 'hello' and 'goodbye' to my beautiful boy. That seems like such a long time. I have had a wee cry about that number... Who even knows what 868 days feels like? It is madness. That seems like such a long time.
Right, I have had a moment and now I need to carry on with this thought that I started. Now, do not slap me for this, but sometimes I think it is down to choice, it is for me anyway. You need to understand, that I could never have written these words after Patrick died, not even a year, or even two years, after he died. It is only now.
I was thinking about this blog and its future. And, I was thinking about my life, and the children, and what it was all going to be about now. And I came to the realisation that I am holding on to all this anger and 'why' questions and darkness because I feel bad for enjoying life when Patrick is not here. I feel like I will forget him if I do not hold onto the hurt and anger. I feel like people will forget him more if I choose to be happy and see the light and try to enjoy each and every day that I have.
I know that this is common among bereaved parents, but I honestly thought that I was living life and not holding on to any hurt, anger, resentment [insert negative emotion here]. But, I am not. I do not want to be angry and negative all the time. I do not want to be pessimistic about life. I do not want to only feel sadness when I think of Patrick. I know that I will be sad, I will not pretend that it is a switch that I can flick and never have any sad moments for the rest of my life, but I want his life to be positive. I want his impact to be good.
So, I am embarking on a new 'journey', if you will. I have written before about how I feel lost. And, 868 days is a long time to feel lost. But, I finally feel like I am finding myself again. It has taken a long time and some truly determined effort and soul searching on my part, but I need to take this other road; I need to turn the corner. I need to remember that I am not a bad mother for wanting to be happy.
I know that this may not be the cuppa that some want, but it is really tiring holding on to so much negativity. I know, I have been doing it for the last 868 days. Longer even. So, I choose happiness, and light, and sunshine. One day at a time...
Yesterday I attended Bereavement Training in Antrim and it was a brilliant day. It was wonderful on two parts - personally, because I did not cry (bonus!!); and professionally, because it was great to meet other women who are so passionate about the bereavement care which families receive.
I always find gatherings of like minded people a wonderful and fascinating environment. There is so much passion for the same cause and so much openness to share and learn. It was great to be amongst so many dedicated and hardworking midwives.
There was a lot covered yesterday and it was great to be on the receiving end of this information. Some information rang true with my experience, but other information and scenarios did not. We discussed communication, not making assumptions, and how to break bad news. We looked at different experiences from bereaved families, and some quotes covering different areas of life - work, friends, remembering, triggers, religion, and different cultural experiences, amongst many others. So many things change when you lose a baby and so many areas are affected.
There were even some 'aha' moments for me. One in particular was about the turmoil of a loss. One minute you are going along with life and the next minute everything stops. Life changes beyond recognition. And these changes are far-reaching and long-lasting. There was a piece in the training about how a lot of people end up changing jobs after a loss. This was my 'aha' moment. I thought, 'really, this is actually a 'thing'?' My life has changed beyond measure and so has my 'job'. The realisation and recognition of how traumatic loss is was comforting for me.
People cannot realise enough that everything changes.
I have attended a few training sessions now, both as a Sands speaker and as a participant, and the majority of people who attend are midwives. I understand this. Midwives are the people who are there during the bereavement. They are the ones who often break the news of the baby's death to the family; they are often the ones with the family before the birth answering their questions and mopping up tears; and they are often the people who are there delivering the baby. They are also the ones visiting the families in their homes after the baby has been born. Honestly, I do not know how they do it. They need support as well. They experience a stillbirth, not in the same way as the family, but they are there going through it.
It is wonderful that this training is now available. But, more needs to be done to pass on information about the best way to provide care during a bereavement. And, this information needs to be passed on to people working in other departments and areas of the hospital. Where are the doctors, consultants, and management? From my personal experience, they could benefit from this type of training as well. So, where are they?
All it takes is one comment from someone to make the grief and bereavement worse. All it takes is one insensitive throwaway remark from someone to derail healing and acceptance. Any person who comes into contact with bereaved families should avail of training and information about the best care to provide for bereaved families.
I hope to spread the information learnt yesterday to those that are affected and hopefully there will be greater exposure from other staff members in the training sessions coming up.
I have been in a funk these past few weeks. I will be honest. I do not know why, but I have been very, 'meh' lately. Usually I would be an optimistic person, a glass-half-full type of gal, but not at the moment. But then I wonder if optimism can exist alongside life after loss...
Can I be happy after Patrick? Can I focus on the positive and good in life when Patrick is gone? It is difficult being me at the moment (and I am not looking for sympathy here). I would not wish it on anyone.
Everything is so confusing and murky and sad. The weather does not help, let us be fair. It rains all the time. Every. Single. Day. And then when it does not rain, it is cloudy and dull and dreary. There is not light, no heat, no warmth.
And sometimes I feel like this is what life is like.
You see, and sometimes I have avoided telling people this, Patrick is dead because of negligence from the hospital. He should be here. It is this fact that I cannot reconcile my life with. I did everything I was supposed to do when I was pregnant with Patrick. I knew there was something wrong and I was not listened too. Now, I have a cross in a field. How do I put that into my life and wake up tomorrow with a smile on my face full of optimism and positivity?
I saw a psychiatrist on Monday (yep, that is how far life has got) and he said I have PTSD (post-traumatic stress disorder). What? I feel weighed down by those words.
Where do I go from here? I need to find the light again.
Sometimes I cannot remember what Patrick feels like; I cannot quite grasp what it feels like to be his Mum.
He is a separate entity in himself. He is completely different to Shay and Florence and obviously, I have a very different relationship with him than the other two. He is on my mind constantly and I am always aware of his presence and absence.
It does not matter whether the children and I are at home having a morning snack, outside in the garden, or we are all out together with Daddy sightseeing or eating. No matter when or where, if I look at them two, I see Patrick not being there.
Sometimes I will catch the husband looking at them and I wonder if he thinks the same thing. I wonder if he looks at them and sees Patrick missing also.
I know that I have lost a child and I know that I am missing something, but sometimes I cannot grasp what that feels like. I feel like I am on autopilot. I feel like that part of me is visible but hidden at the same time. Does that make sense? I feel bereft but incapable of grieving in the same moment.
I never really feel joy or happiness when I think of Patrick. Will I ever? Of course I am very grateful to be his Mum, but there is too much behind that sentence to figure out. The only concrete emotion associated with him is sadness. But, sometimes I cannot conjure up what that sadness feels like and so I do not know how to feel connected to him. I do not know what it means to be his Mum; I do not know what it means for him to be my son.
How does he be a part of our lives without feeling sadness? How do I have a relationship with him that moves and evolves throughout my life? I cannot seem to figure out what we are supposed to look like together. But, then, maybe I am trying to define and control something that cannot be controlled or defined?
All these questions all the time and no-one to provide the answers. Sometimes I wish I knew what was going on. But, I do not. Maybe nobody does.
All to often I fall into the habit of sitting here waiting for an answer to appear...
I sit here at my dining table facing a window which is full of cloud. Everything around me is balancing - books and papers balancing in piles, Shay's toys balancing on each other, and the children attempting to balance on blocks. No matter how many times I tell them not to stand on their toys, they are always doing it.
They are both standing next to each other staring at the television, balancing. They have so many mannerisms which are the same that I wonder what Patrick would have been like...
It is all a balancing act. Life is a balancing act. I also balance. My balance is on the brink of emotion. Will I or won't I?
I have heard a lot of stories lately about people and their loss. I have heard a lot of stories lately about the reactions of the people in their life, of the philosophies directed at them, at the comments overheard. It makes for heartbreaking hearing. But, that is the nature of my 'job' now and I do welcome all conversation. Even if heartbreaking to hear, I relish in hearing the stories.
It always amazes me what other people have gone through after they have lost. Sometimes it does not have to be a child who has died, some people say crazy things after an adult has died also.
You see, the reactions of people affect the person who is grieving. If we are told constantly that we need to 'move on' then we start to bottle up our emotions. If we are told constantly that we should not worry because we will have another child then we stop talking about our loss. If we are told constantly that we should be 'over it by now' then we pretend to be happy.
And pretend and bottle we do. But, surely, everyone is different and everyone deals with a situation differently. You show me the Definitive Guide On Grief and I will show you a rubbish bin to put it in. A person should be allowed to feel however they want/need to feel. And a person should be allowed to feel down/sad/bereft for however long they want to feel that way.
Why the constant need to be happy, or act like we are happy? I think too often when people lose a baby there is a rush to make everything better. But, nothing can ever be made better. The loss and sense of emptiness is always there.
Because the moral of the story is that, we have to allow ourselves to feel whatever it is we need to feel before we can make sense of anything. And this is not just a moral for people grieving. It is a moral for any person going through any myriad of situations which a person can go through.
Life is a balancing act. There is both happiness and sadness on either side. We should not pretend to be happy all the time.
You are allowed to be sad. No matter what type of loss. No matter how long ago.
You can stop listening to everyone telling you that you need to move on. You can stop listening to people making out that enough time has passed. And you can stop listening to people telling you that happiness is the way forward.
You are still allowed to be sad.