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??
Yesterday afternoon we went for a Sunday drive. I love a good Sunday drive.
We visited some waterfalls which are fifteen minutes from my house and which I have never been to. I find it amazing that there is such beautiful places on my doorstep and I do not even know. The hubby always says that you will travel miles to see something far away, but will not see something on your doorstep. In this case, that is very much true. But, we are trying to change this and do our best to visit the lovely places in our area.
Before we went for the Sunday drive though, we visited Patrick. This is a part of our Sunday which I do not really find any joy in. I find no comfort in visiting Patrick's grave. He has a nice view, but the view from our house will always be nicer. The view is about the only thing going for the place.
After we said 'hello', we went into the chapel to light a candle, which is what we usually do. Shay calls it, 'Patrick's Castle'. He has a great time running about and exploring. He usually stands up the front and pretends to read things out, like he is conducting a sermon.
Anything the Shay does, Florence is becoming more involved in and yesterday was no exception. They had both found a Mass sheet and were up the front on the altar having a great time. If there are people in the church, which is rare but happened yesterday, we will keep them quiet until the people leave. If the place is empty though, they can run around as much as they want, although there is a limit. I do not care that they run around and I do not care that they are loud and playful.
Watching them both play on the altar yesterday upset me because I thought, 'I wonder if Patrick is playing with them? I wonder if he comes and plays in the chapel with his brother and sister?' It breaks my heart. They were having such fun with each other that I wondered whether Patrick was a part of it. I would love for them to tell me that there was another wee boy there called Patrick who was playing with them. I have heard/read about stories like this and I would love if it happened with Shay and Florence.
But then I wondered whether Patrick is sad that this is the only way he can play with them? Does he feel left out? Does he feel sad that he cannot play with them the way that he should be playing with him? Is he lonely? I see the gap all the time, in everything that we do, in every place that we go. Sometimes the hubby and I will mention it, and sometimes no words have to be said to know that we are both thinking it, but it never goes away. It never subsides.
The sadness and loss is everywhere at the moment. There are changes afoot and it brings up emotions about Patrick and makes me relive his life and death. I worry about my relationship with him now; I worry about the children's relationship with their brother. It is confusing. It is a path that has no map or handbook.
Sometimes the sense of sadness is all consuming and I am there at the moment. But, life keeps ticking by and I am very much aware that the children will be up soon. I must dry the eyes and put on the other face - the one that is positive and optimistic and loves life - even when life is cloudy and cold and silent and lonely.
Have you seen any photos or posts about #15babiesaday?
As part of Sands Awareness Month, Sands groups all over the United Kingdom have been taking part in a campaign to raise awareness of the fact that 15 babies die each day. That is 15 babies dying shortly before, during, or after labour. Fifteen babies - it is a huge number. That is fifteen families burying a child; fifteen parent's dreams and hopes shattered; fifteen people who never have the opportunity to feel the sun shine on their skin, to go for a walk in a forest, to have a hug with their Mummy or Daddy... I will stop there. It is heartbreaking.
Here in Fermanagh it was a family affair. Myself, the husband, and the two children (as well as Patrick, I am sure) went to a few locations in Enniskillen last Monday. We had a clothesline with us which had 15 babygros pegged to it (one to represent each baby lost that day and every day). We went to the Ardhowen Theatre, to Enniskillen Castle/Museum, and outside the Town Hall. We took a photo at each location and answered a few questions from people as well. It was a brilliant day and the sun came out as well which was a bonus.
I do not know if 'enjoy' is the correct word, but I do enjoy taking part in these events. It is for Patrick and because of him that I do these things. This had even more meaning because we did it as a family, with everyone there. Patrick is one of those babygros and it warms the heart to see Shay and Florence playing around them.
It has been a very successful campaign so far and I hope that it will continue to raise awareness. Mostly though, I hope that it helps to reduce the number of babies who die and the number of people who experience the devastation of baby loss.
We will be taking the babygros on a holiday in a few weeks. Look out for the photos. I do this for Patrick and all the other babies who never got to wear those outfits...
I have been absent for a week. It has been an interesting/daunting/confusing last few weeks.
The husband is off sick from work. The doctor calls it 'grief reaction'. Basically, he is finding it hard to come to terms with what happened to Patrick, and I suppose everything that has happened since. He says that it is like he has just woken up. He wonders where he has been these past few years.
He tells me that since Patrick's birthday, he has been feeling down and numb. He is angry with most people and most things. He says that he wakes up at 4am and thinks of Patrick. He remembers holding him in the hospital and thinking that he was just sleeping. He wakes up and relives me telling him that Patrick had died. He wakes up and wonders where he was for Florence's birth. He asks me why he wasn't there.
I do not know what to do. As I have come up out of the gloom and depression he has gone down. It is a confusing time. If I think that no-one talks to me about Patrick and what happened, he has had it worse. Not that it is a competition. There are people that he works with who have never mentioned Patrick even though everyone knows about it. He was 'fine' with the silence before, but now it has all come up and come out.
Me to the world: 'Hello? Are you there? Your friend/colleague/workmate/neighbour/brother/family member is having a hard time of it at the moment. Are you listening?'
The world to me: silence... deafening silence... turned away faces...
When, or if, he does go back to work no-one will mention anything. People have actually implied that he is using Patrick as an excuse for some time-off. If only people knew...
So, where does this leave us? And, the main word is 'us'. We are in this together. The husband was there when I was at the bottom and now I will be there for him. Forever and always.
Yesterday was the first ever Walk A Mile In My Shoes event in Fermanagh and I am very happy to say that I brought it to the county. It was very well attended and it was lovely to see familiar faces. We were all there for the same reason - to remember a wee baby who has gone too soon. Everybody gathered and put on Sands t-shirts, our walking shoes, and our best composure to participate in a walk that may not have been long in length, but was long in significance.
Before the walk, I was approached by an elderly gentleman. He asked if I had any information about the group and unfortunately I, or the co-ordinator, did not. I told him that we were on social media and the internet and he said that he had access to the internet. We told him the internet address and then he said the most heartbreaking sentence, something that will stay with me forever.
He said, 'because I had one' and obviously meant a baby dying. He got physically upset and turned away, brushing off our words as he walked back to his car. His wife was in the car and she just gave me a sad type of smile. And then they left.
I found the whole thing heartbreaking. In all honesty, that was probably the first time he has ever spoken in public about his baby. It would not have been something acceptable fifty, forty, thirty, or even twenty years ago. As awful as it is to bury Patrick, at least I have some type of platform to talk about him.
I cannot imagine what it must be like to live your whole life with silent grief, with a hole in your family that you cannot speak about. This is why I find working for Sands and organising events for bereaved families so important.
I wish I had of given him a hug, or invited him on the walk, or blown up a balloon for him to release. I wish I had been able to do something, anything, to relieve his hurt. I only hope that he will search the internet for us and find some information, some solace, in what is there. I hope he can embrace his baby and find comfort in the fact that people are here now if he wants to talk and remember.
In the large plan that is life, who decides that we do not talk about those who have passed away? Whose decides when it is no longer 'allowed' to mention those who have died?
I was at an event on Thursday talking about my practice/business. I was brainstorming with a group of woman about a possible name. I was telling them what I want to do, be, and what my plans are for the future. It all comes from Patrick so I was talking about the necessary support services which are lacking in this society and the cultural silence around baby death which is too prevalent.
A lovely colleague started talking to me about people who may not want to talk about death. She mentioned her sister-in-law who is now a widow and how the family do not talk about her late husband for fear that they will upset her/set her off/make her cry. Now, I understand where she is coming from, but I disagree wholeheartedly. I am pretty sure, without even meeting this women, that she would have mentioned her husband at least once every single day of her life. So, why in death would she not talk about him? Obviously, the conversation would be different, but that does not mean that the conversation should cease.
I have never met a parent who has not wanted to talk about their baby. This is fact. And, if someone did not want to talk about their baby, then that is fine. I would rather have a support service in place and have people decide that they do not need it instead of people needing someone to talk too and having nowhere to turn.
When a person dies, there is an invisible time limit on grief and feeling down. We are supposed to be better, be happy again, to move on, and get over it. But, this simply does not happen.
I cannot wait until I live in a society where I can freely talk about all my children without sideways glances, grimaces, and looks of worry.
I live in hope.
'Patrick's was an invisible death, but that does not mean that his life was invisible, that his legacy will be invisible. This is part of his legacy'.
This is how I ended my talk to a group of midwives at Queen's University in Belfast on Wednesday. I was speaking at an Improving Bereavement Care Training Day as part of SandsNI. What an experience. There was not a dry eye in the room. No matter how many times I practiced at home, I still got upset. There are a few points in Patrick's story that even now, two years on, still reduce me to tears.
The midwives must have been moved by Patrick's story because they cried along with me. The coordinator said that he was watching the reaction of the students and that it was amazing to see everyone sharing in Patrick's story. Really, this is all that I want. I want Patrick to make an impact. I want his story to resonate with these students so that when they go out and look after other pregnant women, that they think about what I have talked about and maybe they can change some things. There have been comments which, although sad, are also very positive.
And, this is what I hope for also. I hope that Patrick's story can be used in such a way that it has a positive effect on people. So, although it was very sad and emotionally draining, it was also extremely cathartic. I think sharing knowledge and experiences is different - you can only learn so much from books.
I will be doing more speaking in the future and using Patrick's experience to do good. His legacy will be far-reaching.