Sunday, 21 October 2012

Louise: What not to say or do...

This post comes from Louise's blog Team Lloyd. Thanks to Louise for allowing us to publish this here also...

I have over the course of the last couple of months made light references to some inappropriate ways that people have spoken to or behaved to Daddy Lloyd and I since Harry Lloyd was stillborn, the problem being that these have in no way been taking lightly by us. In fact the thoughtless acts have caused so much more hurt and pain it has made dealing with our terrible loss even harder. It makes us question ourselves, each other and who we can call our friends and family.

I have in moments of anger, anguish and turmoil turned to this space to be able to type out my feelings and it does in some small way help me understand how I am feeling. I guess understand is maybe not quite the right definition. It allows me to give voice to a part of me that is unable to speak up for itself at the moment.

I have been drafting this post for weeks now and to be completely true to myself I think it’s time to publish it. In some small way it may help me to not be so polite to these people when things are said that upset or hurt us. And when I say polite, I mean that when insensitive things have been said or asked I have found myself to either actually answer the question, defend myself, or have to justify why I am still not over, turned any corners, getting on with, or moving on from the loss of my son.

Through my career as a nurse I have been sent on many training courses which have focused on how to talk to parents going through a bereavement, through tragic circumstances and/or the time it takes to process this and the journey that an individuals grief may take. I remember being sat in a classroom and thinking to myself, how can people not know instinctively what to say. Surely you can just imagine yourself in that situation, know how you would feel and speak appropriately from your own emotions and if you can’t do that tell people how sorry you are, how you just don’t think you have the words. From my previous experience parents have always appreciated the honesty.

It is therefore shocking to be on the other side of this now, we are suddenly “The Parents” that have suffered the loss. It’s even more shocking to realise that people can say some of the most hurtful things whether they intended them or not. What is more frightening is if someone has made a mistake in how to say or show us their sorrow that they then have either needed us to point out how that act has made us crumble into waves of grief or they haven’t even realised how inappropriate and insensitive they have been even when it has been pointed out to them.  So incase you ever find yourself in this situation where you are not sure what to say to a friend, a colleague, a patient, a client, a sister, a brother, a daughter, a son, a mother, or a father then please try your upmost not to say these because the recipient may not be as nice as I have been up to now.

1) “I am here to do the horrible bit – you know the heal prick test” Yes it really happened. A midwife came into our house just days after Harry was stillborn carrying scales and telling us she was here to perform the heal prick test. We literally had no words.

2) “The labour? It can’t have been as painful as a real labour can it? I mean like the contractions you get if you have a full term labour” Scarily I actually started to answer this question, with my heart on my sleeve I tried to justify that my labour was very much as real as anyones.

3) “Are you still upset about that?” Yes. Yes I am still devastated and no we don’t know when this grief will end. If it ever will.

4) “It’s best I don’t see you right now because I’m heavily pregnant” If you are pregnant considering our feelings is great, it really is. But please be consistent don’t use this as a reason not to upset us then send an invite to meet up a day and a half later. We are likely to still be upset.

5) “You must have turned a corner by now?” Really? Are you the judge of how we must be feeling now, is there a limit on our grief? Is there a timeframe that you have in your head that we must conform too?

6) “Are you going to try again?” I can, to be honest even start to understand why this is asked, but honestly its a bit like asking a post partum mum “when are you going to have sex again?” – You wouldn’t would you because it’s so personal. Having to answer this question has made me cry, I honestly do not know and it’s far to early for us to even be able to start thinking about it.

7) “Was it because you had an amniocentesis?” Why because if we did it would be our fault we lost Harry? If we had been able to go through an amniocentesis we would have, to have gained a full understanding of Harry’s quality of life. We will never know when Harry’s heart stopped beating, but I know the last time I felt him move, really move.

8) “So what happened? There has been loads of gossip about you” I lowered my head and said there isn’t a lot I can say really. It’s never nice to know you are the centre of playground gossip. To be told that you are over losing your son hurts. I made B Lloyds and mine excuses and we swiftly left.

9) “You seem to have moved on” I particularly resent this remark. We do have to get up every day, and we do have to function, and breath and carry out all those mundane day to day life things. Just because I am pulling myself through each day, making it to the end of each day does not mean that I am not constantly thinking about Harry, remembering what we have lost, coping with not having our baby in our arms, discussing with B Lloyd what her brother would have been like, looking down at my post partum body and reliving the nightmare of the past 8 months. Just because you may have seen me laugh or smile, or write about cooking myself dinner most definitely does not mean I have moved on. We doubt we ever will. Life has a uncanny way of continuing we are painfully aware of that, understand that, but don’t assume that Harry will ever leave us, or be forgotten by us. Because he won’t.

The next set of please don’t do’s are harder to explain. These acts have happened and been directed towards us and have been as hurtful as the said word.  So I urge you to just think about what you might be doing and how it might be interpreted by a family going through something devastating like losing a child.

10) Don’t send a text/email reporting your own healthy 20 week scan - try a bit more of a personal touch with this one maybe a phone call to see how we are doing, and consider the amount of time it has been since the stillbirth. Consider a week to early.

11) Don’t hear devastating news, a life changing diagnosis and then less than 48 hours later forget that these parents, are returning to the hospital for further tests and ask them why on earth they are not at work.

12) Don’t comment on “wasting £40 on balloons” for the parents memorial to their baby.

13) Don’t ignore the huge elephant in the room if it is the first, second, third or twenty third time you have seen the parents. In all likelihood although your life has moved on their’s hasn’t.

14) Don’t say “Oh well I’m sure you will feel better tomorrow” Expect parents to be less inclined to be happy on their birthdays, anniversary days, or just any general day.  They probably won’t want to hear you will feel better tomorrow, because they probably won’t.

15) Don’t tell parents they will never have another chance of baby. Especially if there has been a genetic finding. The parents are unlikely to know the full implications for themselves at this point, you most certainly do not know this.

But at the same time there are many many things that you can say or do that although cannot change what we have and are going through, can show that you are reaching out and touching our hands metaphorically or physically. You can see the pain, understand the pain we are experiencing. That you love and support us. There has been so many little things that have helped Daddy Lloyd and I, things so simple that often friends or family will never quite understand how much they have helped or supported us. Acts that we cannot ever find the right amount of words to express our thanks and gratitude for.

So Do Say...

1) I’m so so sorry.

2) Admit if you do not know what to say.

3) It is ok to cry, in all likelihood so will we. Don’t be scared of our tears, it’s a release and we just don’t know when we will cry. It can happen at any moment, even after laughter. It can even happen on days I consider myself to be doing ‘alright’.

4) Do ask questions about Harry. One of the nicest questions I have been asked is “Did you get to spend time with Harry” I love answering that question because yes, yes we did and it was the most wonderful 24 hours. He is our son, our baby and it was the worst thing imaginable not to bring him home but as his mummy I loved those very special cuddles. That was our time with Harry and I want to be able to talk about it.

5) Do talk about random stuff, once that great elephant has been removed from the room we do still want to hear about this and that.

6) Do expect us to not want to look at/hear news of a friends/relatives baby being born. Ask us how we feel about hearing about so and so. Some days we might be happy to hear details other days we might want to decline. But we appreciate you asking us first.

7) Do ask to see us, but we may suggest you make the arrangements. Decisions are hard enough so taking some of that strain away is a relief for us. Make the most of the local Starbucks. It does coffee and cake and it just might make us smile.

8) Do just send random text messages/tweets/messages asking how we are doing.

9) Do simple things, like we were brought a LOT of M&S food just after we were home from the hospital, it meant we didn’t have to think about what to cook we just had food readily available.

10) Do hug us for that split second longer than you would usually, we will appreciate it, sometimes a hug can just lift us!

11) Do mad things like run half a marathon in Harry’s memory, donate money to Cystic Fibrosis, ask to see our pictures of Harry, plant roses in his memory. Talk about Harry, because we want to talk about him and we would love to talk about him with you.

I have now rewritten, reread, rephrased this post more times than I can remember. I really hope it is read and reread, and somewhere it helps someone know how to speak and act with a loved one going through something similar, it helps people to understand just some of the pain we feel daily, it helps me to get all of these feelings of my chest and above all it helps make the subject of loss and grief a more open subject so that when you are faced with not knowing what to say to someone you might be able to say or do the right thing.


  1. Louise, thank you so much for agreeing to publish this post on our blog. I think it will really resonate with a lot of the readers here.

    For me, I have also come across so many of these comments/ questions/ situations and I still find it hard to believe the things that people can say. Also, when you start to try and justify yourself and wonder why on earth you're having to do it!

    My pet hate is when people say that it's God's way of saying something was wrong. My girls were absolutely perfect, fact. And even if they weren't, this is something that should NEVER be said to a grieving parent.

    Your list of DO's is perfect and I truly hope that this blog post is shared many times over.

    Thank you again,
    Clara x

  2. Thank you Clara for wanting to repost it, I am honoured that it has been shared as much as it already has been. It was such a hard post to write and it literally has been in my drafts for weeks. I really felt strongly that those that had said silly insensitive things should know how bad they were because when they said them to me I was too shocked to know what to say. So I literally found myself trying to answer them or justify myself.

    I really really hope that this can be read and re read many times and that it might just help someone to know what to say, even if that it is "I'm so sorry I don't know what to say" I think those of us who have ever been in this awful position just are grateful for honesty and comfort that someone else also is lost for words.

    Thank you so much for taking the time to read it and wanting to help share my feelings and post as well. I will most definitely be coming back and reading the posts on here XXXX

  3. Thanks so much for posting this. Lots of it rang true with me, as I'm sure it will do for many others. I think the only thing that stands out as different for me is I hate it when people ask me 'did you spend much time with him?', as we didn't - ditto 'did you get any pictures/get to hold him?', as we didn't do this either, and it's my biggest regret with regards to after he died/was born. These questions hurt me so much more than any others, so I guess it's true that's whats right for one person isn't necessarily for another.

    A great post though, thank so much for sharing xx