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.
In our home, we have photos of Patrick up. I just counted them and we have seven. They are a mixture of just him, of Patrick and me, of Patrick and Daddy, and of all three of us. They all have one thing in common though, Patrick is always turned to the side.
His skin was peeling by the time he was born (do not be grossed out, it is a natural part of decomposition - I am only being completely honest - this is my reality) and he was missing an eyelid and he had a mark on his cheek. In photos he is always to the side; he always shows his good side. I have been trying, for a long time, to find someone to touch up his photo so we can have a full-faced one up.
I have finally found that person and have that photo. It is like Christmas. I wonderful friend took Patrick's photo last week and touched it up. I received it back on Thursday morning and I just sat here at the table and cried for a good hour. I honestly did not know that was going to happen. Maybe I did not realise what the photo would look like? Or, maybe I did not realise how much I wanted to see him? It is like seeing him again for the first time in two years. It is marvellous. I never realised how much I missed seeing him until I saw that photo.
I also never realised how much he looked like Shay. The husband always said he was the spitting image of Shay, but with dark hair instead of blond. I must admit, I never really saw it that much, or could not imagine it from the photos we had. I saw a slight resemblance, but nothing concrete. From this photo though, it is amazing how similar they look.
I have started again... It breaks my heart how much they looked alike. I have the photo on my phone so I carry it with me. I can look at it now without crying, but not for long. It is like the start of the grief all over again, I have found a trigger. But, I am sure it will get easier, like most things. I am sure that I will 'accept' the photo after a length of time.
Next step: a canvas of Patrick to go next to Shay's one on the wall. I cannot wait.
Blue skies and sunshine = my idea of heaven.
I am from New Zealand, but now live in Northern Ireland. I have gone from a land of sunshine, tropical weather, and tanned skin; to a land of cloud and rain, and pasty whiteness. I have started using fake tan. I know, the shock and horror of it. Does anybody from New Zealand use fake tan? I did not even know it existed until I moved here... *joking*
But, these last two weeks have been glorious - absolutely beautiful. I always tell Shay and Florence that we have to make the most of the sun and we sing that, "sunshine makes us happieeeeee". We have been sitting outside for the last fortnight, nothing achieved (apart from tans - yay), and plenty of happiness to spread around.
Being outdoors and in the sun is something I was reared with and it is something I miss a great deal. When I am outside with the children gardening or going for a walk, I often think of Patrick. His birthday always seems to bring some sun (thank you Patrick). I always think that I should have three children running around, three children to buy togs for, and three lots of ice cream to share. But, I also think, this is my lot. This is my definition of family forever. I try and teach the children to be thankful for what the day brings and to be grateful that we are able to enjoy these things.
After everything that has happened, and with investigations still going on, when the sun comes out, I can honestly say that I am happy with my life. The only 'bad' thing in my life is that Patrick is not here, but that can never be changed. I accept this and am turning his death and what happened to us into something positive, into something to be harnessed to teach and educate, and raise awareness. I do not know where this is going, or where it will end up (although I know what I want the finish line to look like), but I am grateful that I am moving, no matter how slowly.
I feel guilty sometimes for Patrick, that maybe I should not be happy; that I should not forgive. I feel that to forgive those for what they did or did not do, will somehow be saying that it is 'okay' that their actions led to Patrick's death. But I know that this is not the case and that this is an unhealthy outlook to have. It is something that I am working on.
I read that other day (and it has become like a mantra to me): "remember that out of hardships come extraordinary things". Patrick is my extraordinary thing, my movement, my motivation.
Over in this part of the world, 'trigger warnings' have become increasingly popular. These warnings are in place to tell people that there may be something within which will upset them.
There is a mini-television series on at the moment called, Little Boy Blue, and it is heartbreaking. If we have to warn every type of person about the possibility of them getting upset, then they should have included a warning for me because this is right up there with everything that I need to avoid in my life. Now, do not think that I am saying it is a terrible show because it is not. It is brilliant, but it is heartbreaking.
It is about an eleven-year-old boy who died almost ten years ago when he was caught in the cross-fire between two gangs in Manchester. It is the 'story' of when he died and focuses on the police investigation. The husband and I watched the first episode on catch-up on Sunday and I knew then that I needed to avoid it. It makes me so sad that this family had to bury their son for no reason. It is awful to see them going through the days after his death, and slowly loosing the plot through grief, confusion, and simply not being able to function as they did before.
There was a scene last night where the mother goes into the boy's bedroom and after looking around, climbs into his bed and lies down. How heartbreaking. I cannot do it. It resonates somehow, and yet our 'stories' are completely different. I do not have anything of Patrick's, but I know what that feels like, to want to be so close to them that you will lie in their bed just to catch some sense of who they were.
I have a blanket that Patrick was wrapped in when he was in the hospital and I used to lie in bed with it, just to get a smell of him, just to be close to something that was close to him. It upsets me thinking about it now. I understand what that yearning and longing feels like and that scene, that memory of loss, is my trigger. I cried throughout the episode last night, cried at things that there was no need to cry at. It was awful to watch the loss and utter devastation that was left behind.
So, I have regressed. I want to get Patrick's blanket out and lie with it all over again.
It has been, April 21st has passed again. I think the lead up to it is worse than the actual day.
On Friday, the Health Visitor came for Florence's one-year review. She said that I could have postponed it, but life goes on. I expect the world to stop. I want everyone to stop what they are doing and acknowledge Patrick as the beautiful wee boy that he is. I want everyone to know how he died, that it could have been prevented, so that it will never happen again to another baby and their family. But, let's be honest, this does not happen and never will. So, the health visitor came. We talked a wee bit about what I am doing at the moment 'career' wise and things are progressing nicely (more later).
After the Health Visitor, we all went into town to buy Patrick a balloon and a birthday cake. I went to a card shop and bought a helium Thomas the Tank Engine balloon. So far so good. We then went to the supermarket to buy cake.
So, picture the scene. I am outside, shopping bought, and Florence is watching me pack it before putting it in the car. Shay is running around, but then tells me he wants to get into his seat. He has a Go Jetters magazine that he wants to look at. I say, 'ok, hop in if you want'. I am packing groceries when I hear Shay talking about a balloon. 'Thomas the Tank engine balloon, hello balloon'. It clicks - the balloon is loose in the back. I turn around and see the balloon pocking it's top out of the car. I run towards the back door shouting 'grab the balloon', and reach for it, but it slips through my fingers. A lady in the car next to me jumps for the string, but to no avail. And, so we all watch it floating into the clouds. The lady actually apologies for not catching the balloon...
It definitely was not the balloon release I had in mind. But, the balloon headed in the right place and would have reached Patrick no matter where it was released from. I would like to think it was Patrick's way of telling me that things cannot be planned, that everything always works out, and his way of having a laugh at my expense.
Patrick, we hope you liked your balloon xx
This whole week has been a struggle. I have still been functioning, do not get me wrong, but Patrick and what happened two years ago plays on my mind constantly. We are living in a very melancholy, reflective house at the moment.
Two years ago Tuesday, we were in the hospital. I was worried about Patrick. We were eventually sent home after nothing being achieved. If anything, Patrick was worse off by that stage. In hindsight, I wish we had of driven straight to another hospital. But, why would I have done that at the time? The guilt haunts me.
Two years ago yesterday, Patrick moved for the last time. He last kicked me at 9.30pm on what was a Sunday night. A few hours after that, we were told that Patrick's wee heart had stopped beating. Wee pet.
Two years ago today, we went back into the hospital so that he could be born. I remember driving to the hospital and the whole country was in cherry blossom bloom - they still remind me of him and have become his flower. I went for a walk earlier this morning and picked a few blooms for him. They are sitting underneath his photo on a bookshelf which has become his shrine.
Two years ago tomorrow, he was born. I always wonder if I should mark the day he died - April 19, 2015. But, what would I do? I do find it strange, when I really think about it, that we have his birthday two days after the day he died. I know that is when he was born, but he could never be born in the same way that most children are born.
Anyway, Patrick's birthday tomorrow. We will see how that goes...