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.
Say 'hello' to the newest columnist for my local newspaper, The Impartial Reporter.
Ahhhh, how excited am I??!!!! I have to pinch myself that it has finally come to fruition. I am so elated, joyful, excited, and #newcareer. (My grammar has gone out the window!)
I am now writing a monthly column in the newspaper titled, 'My New Normal'. It is about life after loss. It is my story of navigating life, of living with this loss next to me, and about milestones and dates which are generally taken for granted, but are some of the hardest days for the bereaved.
This months' column, my first, focused on the idea of pregnancy being a normal and natural event - an absolute give in. But, what about those pregnancies which do not end as they 'should'? What about those babies who do not 'make it'? And, what about life for those babies and their families after they die? If I feel like no-one talks to me about Patrick, what must Patrick think that no-one talks about him? The poor boy. What about the children?
I write about the children... I think Patrick would have either been this centuries answer to Jonah Lomu, or he would have cured cancer. Yep, strong claims, but true. That is what he would have achieved in life. I can see the headlines now: 'Patrick Maguire - the half kiwi, half Irish player taking the rugby world by storm'. I would have been so proud of him collecting his Nobel Peace Prize for curing cancer. I can see it now...
But, if only it was that easy. If only I could make these dreams a reality. Because the reality is that pregnancy is not a guaranteed success. People are not guaranteed to have babies and start families. This is the side of life which people do not talk about. Until now.
I end the article with: 'appreciate those you have, talk to those who have lost someone, and pray for sun!' We should all do these three things and, if you do get a load of sun, send some over my way!
On Sunday we went out with the children. This is definitely becoming a ritual/habit for our weekend. I look forward to it and always wonder where we are heading to this weekend.
It was sunny on Sunday and we decided to head out for a picnic and a play at the park, and also to visit Patrick. I said to the husband that I wanted to have a picnic with Patrick since it was sunny and it would give the children the chance to play with their brother. The only time I have all my children together is when we sit at his grave - it is cruel.
So, we went for a picnic and it was lovely.
But, after we had eaten a man approached us. He knew the husband somehow and came over to chat. After pleasantries, he went to the grave next to Patrick and started talking about the man buried there. He then came over and stood in front of Patrick. Him and the husband talked about the weather, about the state of the country compared to what it used to be like, and some local goings on and events. They even talked about the state of the ground and how rocky it was. I forget how this conversation started. The husband said that the ground was so rocky that where Patrick was planned to be buried had to be abandoned because there were too many rocks to continue digging. True story.
Do you know how awful it is to leave the hospital after giving birth and go out and start digging a hole for your baby? That is for another day...
The whole time him and husband were talking, I could see him looking at Patrick's grave. He was eyeing it up. Maybe he was reading the plaque. Maybe he was working out who Patrick was and who we were. I do not know. And do you know what he asked and what I told him? Nothing. He never mentioned a word about Patrick.
How can you come and stand at a grave and not talk about the person? How rude that you come and stand at my son's grave and do not even ask about him. How disrespectful that you come and talk to my family and do not even have the decency to talk about my son. No condolences. No questions. No mention. No heart. Or have we passed the time limit on talking about Patrick?
Why do people not talk about baby loss? Or is it death in general which we do not mention?
What hope do I have in the 'outside' world when someone standing at his grave will not even talk about Patrick? It breaks my heart.
I have a problem, but I have never voiced it before. I worry how people will judge me. So, I am going to say it with my back to you.
My feelings for Shay and Florence are different. I tried writing that different ways, but none of them worked out. I wanted to lessen the blow, but I cannot. I feel differently towards them and I do not know why. Do other people feel the same?
Obviously I love them both. I will get that out there first, but something is different. Maybe it is just the fact that I do not really experience joy or excitement anymore. Obviously I am happy, but joy is not really existent and I cannot seem to muster excitement. I do not know how. I can fake it, but Patrick and what has happened is always in the back of my mind.
I feel differently towards both of them and I do not know why. I do not know if it is because Shay is older and more testing and Florence is not. I prefer Florence sometimes over Shay. Shay is whinny and shouty and 'no, I don't want too'; whereas Florence is all curious and smiles and thumb sucking while giving hugs. He is unruly and she is cute.
I feel differently towards both of them and I do not know why. I do not know if it is because he is a boy and she is a girl. He is all trackpants and gumboots and she is pretty dresses and hair ties. Sexist? Gender stereotyping? I am sorry, but I do not care at the moment. I cannot change how the head and heart view life at the moment.
But, mostly, I feel differently towards them and I do not know whether it is because one was before Patrick and one was after Patrick. In the film, Return to Zero, a doctor is talking to a mother and says that the mother, because of her loss, has been given a gift. Her gift is that she will always appreciate those children that she has in a way that people who have not experienced a loss cannot. She will forever cherish the life she brings into the world and not take it for granted. That has stuck with me. Maybe this is where it is all coming from.
Shay was always here. Shay was here before the miscarriage, before Patrick, before the turmoil with Florence. Do I take him for granted maybe? But Florence, well she will always be after Patrick. She is the rainbow baby where Shay is not. (But, I do not call her a rainbow baby because I do not want her to have a label where he does not.) But, is she different to Shay because of everything that came before? With Shay, I did not know what was to come, I took it all for granted. But with Florence, I know exactly what has not come and what can never be.
It upsets me that I view them differently. It genuinely does. I wonder if I am going to damage them emotionally, psychologically... I wonder if they can pick up on how I feel.
Why do I feel this way?
Sometimes I wonder why I do what I am doing. It is a tough road to head down.
A lot of people tell me that they want support, that they want events and opportunities where they can meet other people who have lost a baby. They want friendship, they want acknowledgement. And then there are the health professionals who want a chance to learn, and a chance to understand what baby loss feels like.
So, I take all this information and what do I do with it? I start organising. I start thinking of ways to get a voice out there. I plan events that people can come to so they can meet other people and they can feel included and acknowledged. I start shouting about a movie screening - 'it's FREE!'. I start putting it in all the newspapers - 'everyone welcome'. I start talking to people about it - 'it's part of awareness month'.
On Friday, June 30th at 7pm I organised the screening of Return to Zero, the first feature length film about stillbirth. I got in touch with the makers of the film in America and they were thrilled to allow me to show it. They even sent me a signed copy of the DVD. I was stoked. I found a location in Enniskillen. I advertised it on social media, on the locations social media, in newspapers, through articles, and through word of mouth. I bought refreshments for it, got a babysitter, and had a welcoming 'speech' ready for it.
And do you know what happened?
Seven people turned up. Seven. Eighteen people registered and only two turned up. Only two. One of the seven people was a midwife who got upset and left before the movie started. And the other four had told the co-ordinator that day that they were coming. So, there were six people, plus the hubby and I, so that made eight people. Eight people at an event to raise awareness of baby loss and offer support to the community and those affected.
Where were all those in the community who have suffered a loss? Where were all those who talk about wanting more exposure? Wanting more events? Wanting more opportunities to meet other bereaved parents? Where were all those medical professionals who want an insight into what baby loss is like? Who want to understand what life is like after the parents leave the hospital? Where were the people who registered? Where were the people that the hubby and I know? What about those friends and family who should have come to help raise awareness and acknowledge their family member? What about people in our community who could have shown support?
Am I embarrassed by the turn out? No. Do I take it personally? No. Do I regret organising the event? No. For those few people who turned up, it was extremely worthwhile. It was beneficial and healing for those who came, talked, and watched. I am very happy that I helped those few people. But, I am... I suppose disappointed is the word. I really do feel like I am up against a society that does not want to acknowledge baby loss. A society where they want to put my son in a back room and act like it never happened. A society who would rather turn away from bereavement than talk about it.
So, I feel a bit lost at the moment. I do not really know what to do now. I thought that I would end this blog post by saying something like, 'as long as Patrick is proud of what I am doing, then that is enough', but I cannot quite seem to get to that point.
I feel quite deflated by the whole thing. Maybe I should bury my head in the sand too??