What not to say or do

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 consistant 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 likelyhood 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.

42 thoughts on “What not to say or do

  1. What a beautiful/emotional/some-kind-of-partial-understanding-to-those-of-us-who-haven’t-had-your-grief/brave post. I for one was definitely one of the people to admit that I wasn’t sure what to say and didn’t want to patronise your emotions by asking how you were. Now I can never fully sympathise with you as I have never been in your situation, but how I can now empathise sooooo much more with you. Thank you lovely Louise for opening your heart to us. My eyes are certainly a bit more moist than they were 10 minutes ago. And p.s harry’s memory helped me get up some biiiiiiiiiig hills today. With only 9 days to go he’ll get me past that finish line. I truly can not wait for a glass of vino with you at Butlins. But in the means time just massive hugs and kisses for you xxxxxxxx

  2. Just brilliant Louise, Thanku for sharing & your honesty. I for one will always ask about a loved one who has gone (for whoever reason) because as you said your time with Harry was wonderful & precious & he’s left his mark in your lives that should be celebrated to.
    Sending love & Gods blessings Sx

    • Thank you Samantha, its so hard being on the other side of the coin for once, but having had training I wanted to be able to share certain things to help others, thank you so much for taking the time to read it and commenting XXXX

  3. I am so sorry you have been asked these questions, how utterly heartbreaking on top of losing precious Harry. I would like to say a big thank you for posting this though, I think this is really valuable for those that really don’t know what to say when someone has lost someone special, and it might make others think twice before they do say something unsuitable and verging on the blinking cruel… Big hugs sweetie, this must have been so tough to write xxx PS. Good luck Kate!! :)
    Emma recently posted..YesterdayMy Profile

    • I have been so so worried about posting this, but I really wanted to be able to give a true post and try in some small way to help others if I could. Thank you so much for such a lovely comment and for reading it all too :)

  4. Such an emotionally honest post. It’s heartbreaking and heartwarming at the same time, I don’t even know where to begin.
    It’s also amazing of you to be thinking about helping others when you are suffering the way you are.
    I cried at this post, ill be honest. I wanted to reach over the computer and give you a big hug.

    You’re a very strong lady xx

  5. Thank you for such a thoughtful and useful post – I got a lot out of reading what you’ve written so well. I really haven’t known what to say, and that translated into not saying anything for a while. Every time I’ve written about us I do think about you and others I know who’ve recently experienced loss and feel guilty. I wish I’d sent you more random tweets asking how you are, I just didn’t know if that was a good thing or not; now I know. I hope and pray that things will get easier over time, however long that may be, and that you have many supportive friends surrounding you on a daily basis. xx
    Ruth recently posted..Pregnancy diary: week 38 – midwife appointment and antenatal class 3My Profile

  6. I really admire your strength and bravery at writing this post and pouring your heart out to us. I cannot begin to imagine the pain you are feeling. I know it won’t go away, but I hope that with every sunrise it will become that little bit easier to get up in the morning. I hope you can take comfort in the short time you spent with harry and have happy memories of feeling him move inside you. I am guilty of being one of those people who just doesn’t know what to say. I’m speechless and your post has me sobbing.

    I’m sorry to hear so many people have said such hurtful things to you. I am sure it is lack of understanding that made them say those things. And now, because of your post, a few more people might think carefully about how they word things to those whom are grieving a loss.

    I am so so sorry to read about your loss of Harry and although I don’t you in person…My heart and tears are with you.

    Xxx

  7. Louise, I have sat and read this post with tears in my eyes. I cannot imagine how hard the past few weeks have been for all of Team Lloyd even without these insensitivities. I have so much admiration for how you speak out about your loss, I am sure this will not be in vain, I for one have taken this all on board and should I ever find myself in the situation of having to support someone through a similar experience I am sure I will be re-visiting this post. Well done for being so very brave xx

  8. Firstly, it has been on my mind to apologise for my behaviour when you sent your link through for the charity round-up. I was pushed for time and did not read it immediately so sent an acknowledging tweet with no idea of what you had posted about and was so ashamed when I read your lovely post and found out more about you, Harry and the family and the wonderful Kate of course.
    I am going through a different loss at the moment and I think the more we blog and talk about grief, the more likely we can wake up as a society and integrate it properly perhaps including very early in our educations.
    Your post will help those going through loss and those who just don’t know what to say/do either hopefully through ignorance rather than pure badness.
    Kate on Thin Ice recently posted..This is the room – part 2My Profile

  9. You are incredibly brave and strong to write such an honest post, and I hope you feel some release of the frustrations and hurt from people with writing and posting this. I have no words, only a massive lump in my throat to imagine such loss, and hope that you treasure your beautiful memories of your darling boy.
    Mama and more aka Zaz recently posted..OthernessMy Profile

  10. Hi Louise, I really think that this post will help other people so I wanted to thank you for writing it. My husband lost his brother around ten years ago, his brother was a child at the time. I didn’t know him then but he’s told me about some of the insensitive things people said or did, the ones who crossed the road to avoid him, the hospital Chaplin who was so offensive I won’t even repeat it on here. I know that I still say and do the wrong thing myself sometimes (my foot is normally on a direct line to my mouth) but a lot of that is because unless we have bee through something similar we don’t know how to react and we panic, worried that we’ll upset someone. Hopefully this post will help other tpeople in future. Sending you lots of love, you are a brave, honest and fabulous person x
    Kate recently posted..Straight Outta SouthendMy Profile

  11. A very brave post and I am definitely crying now. I cannot begin to imagine how you feel and hope that you can find even the smallest amount of release by writing about it. I wish I could write more but I just wanted you to know I am thinking of the Lloyds, all 4 of you x
    Bex @ The Mummy Adventure recently posted..Silent Sunday 21.10My Profile

  12. Oh Louise, you’ve got me welling up at work. This is beautifully written and has managed to raise up all sorts of experiences in my life that I thought were safely locked away. I wish I could give you a hug in person but in the meantime, before I start rambling, much much love xxxx
    Jenny (@cheetahsinshoes) recently posted..Silent SundayMy Profile

    • I’m so sorry Jenny, I really didn’t mean to make you cry – thank you for reading and thank you for such a lovely comment it has meant so much to me the support that I have had from you all since I published it. It was a nervous moment hitting publish, and I hope I do get to have that hug one day! XXX

    • That is really what I hope can come out of this post really. We have been deeply hurt by many of these things and I hope that if someone really does not know what to say this might just save them from hurting someone whilst they are already hurting – thank you for reading XXX

  13. Such a brave and honest post. I’ve read this more than once now, and I’m so sorry for not only all you’ve been through, but all the insensitive comments you’ve had to deal with too. Hugs. xxx

  14. Just found your blog via Britmums, and just wanted to say firstly, so sorry for your loss, I can’t imagine what you’ve been through and what you continue to go through.

    And also, what an amazing post. I recently wrote an open letter to our friends and family on the do’s and dont’s of being around us because of our own situation, and it seems to have helped us – I really hope your post does the same and people become more supportive towards you, and others in similar situations xx
    Vicki N recently posted..A curveball of kindnessMy Profile

  15. So moving but hugely informative and important to share Louise. I guess we all get it wrong sometimes but as you say, I always go by the ‘say something rather than nothing at all’. Friends of ours had people walk across the street in order to avoid them. It’s sad that people feel so inadequate and I hope that this helps people realise what they can do that is acceptable/helpful. And of course you’re not ‘over it’, who on earth would be? You have been through hell and are obviously still in it. It’s a hugely long and unbearably painful journey that you’re on x x x
    Suzanne recently posted..An unpleasant realisationMy Profile

  16. Hello! I just found your blog whilst popping one of your pics on my Photo Friday and I just wanted to say it’s beautifully written. My sister in law had a still birth three months ago when she went into early labour and it’s been hard knowing what to say. So Thank You for your advice. I am so so sorry for your loss and for the pain your family must be experiencing.
    B x

    • I was honoured to be a part of the Photo Friday, thank you. I am so sorry to hear about your sister in law’s loss, please do pass on our love and thoughts. I hope this goes some way to help many others to know what to say in the awful unthinkingable situations. Much love and thank you for reading X

  17. What a beautiful and heart breakingly honest post,

    I never know what to say when somebody has suffered a loss, I’m so terrified of saying the wrong thing that I don’t say anything at all. By your honesty I hope in the future I can be a better friend to others at such sad times of loss.

    Thank you for being so brave and writing this post it must have been so very difficult.

    (((hugs))) xxx
    Me,Myself and I ~ Dawn recently posted..Silent SundayMy Profile

  18. Just read your post. How brave of you to post this. You are speaking for everyone who has suffered loss and been kicked in the face by insensitive, hurtful and unkind remarks. As has already been commented, we all do and say the wrong thing at times and this post is a great kick up the ass for us all.

    I really admire you all for all the brave things you have done since saying goodbye to Harry to help others going through what you have experienced. I know you will continue to use your experiences for the good of others. Harry will never be forgotten xxx

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