It’s OK To Be Different…

I feel extremely privileged that since I began writing about losing Teddy, and the life that we have found ourselves in since that day,  that people now write to me to share their experiences of loss.  Hearing that others have found comfort in my words after losing a child or have been able to make sense of their own feelings during loss, makes me realise how essential it is for us all to try and talk about this subject as openly as possible.  It makes people feel less alone, and that can only be a good thing.

Some of the questions I find I am asked most frequently in emails and Instagram messages, come from the friends or family members of someone who has very recently lost a child.  Questions like “How can I help?” or “What is the best thing to say?” .  They often write things like “I want to be there for her, but I am worried I will upset her even further.”

I often wonder if these were the questions that my friends were asking themselves when Teddy died, and how the hell did they know the answer?  Was it led by us; what we said or perhaps didn’t say?  Or did they find themselves entirely in the dark, being led by each other and just wondering each time they spoke or contacted me that it might be the wrong thing, or indeed the wrong time?  It is such a minefield, and not one I would wish for anyone to have to navigate through.  It’s also one that I am unsure I have the answers to, even as someone who has lost my son.

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The more I have reflected on these questions, and on many occasions tried to answer them as best I could; the more I find myself offering non-committal answers to people, such as “It’s so difficult to know as we are all so different” and “What worked for me might not be the right thing for your friend?”.  I worry that I will give the wrong piece of advice, that I’ll set someone off on a mission of good intention only for it to be entirely misunderstood by the grieving parent and it will all be my fault.  After all, I am not a professional in any capacity, I am just another mother on this road (this bloody, buggery, bastard road.  Phew, that feels better!).

When I think about how people expect us to be or to react as a grieving parent, it always draws my mind back to our first (and might I add, last) meeting with a bereavement midwife.  It went a little like this….

It was just six days after Teddy had passed away; it was a day that will stay in my mind for so many reasons.  I’m not entirely sure how long shock lasts when you lose a baby; I am sure it must be very different for everyone.  Maybe it was because my hormones were settling down; my engorged breasts had finally turned a corner and my milk production was stopping.  I think my body was beginning to understand what had happened; in part, at least.  I can remember waking up that day; it was the morning that I have spoken about so often in my writing and when speaking to people; the day I realised that life went on.   As I lay in bed, I watched as the light crept through the shutters on the window; a window that had been open overnight, and so I could hear the footsteps of people on their way to the train station; commuters and school children leaving for the day ahead.   That was the moment that I realised it; life just goes on.  Whether I wanted it to or not, and whether I liked it or not; it was bloody well going to happen, whether I chose to partake or to remain forever in the safety and security of my home in my dressing gown (some days I do still feel like just going back to that!).  With that, I got up and I showered.  I put on some clothes that fitted (those were few and far between I can tell you) and I put on my make-up.  I looked in the mirror and I saw “me”.  Yes, she looked tired and a little (OK, a lot) fatter than usual; but it was still me, I was still in there somewhere.  When the midwife arrived, I greeted her at the door with a smile and asked her if I could get her a cup of tea. I think she thought I was totally mental at this point ; as though she should be getting straight on the phone to the hospital and saying to her colleague “Yep, Jane, we’ve got a real problem here. This one isn’t even crying and she’s dressed.  I think she might have even washed her hair?  We’ve got a code red.”

My husband and I sat with her for around an hour, and in that time I quickly realised that speaking with her about Teddy wasn’t going to be incredibly useful for me.  For starters, she hadn’t even bothered to learn Teddy’s name before her arrival;  to her he was just a nameless, faceless baby who had never made it home.  I can remember thinking “YOU HAD ONE JOB!” My notes were the size of an ancient tablet by this point as they combined Teddy’s notes from the NICU.  I just thought she could have at least given them a flick though to find out his name before she stepped into our home and proceeded to try and counsel us.  I went out of my way to show her photographs of him; to show her who he was.  I don’t think she liked my style, and to be brutally honest I wasn’t the biggest fan of hers.   She wanted me to sit and sob; but I had done that for six days, I wasn’t just going to sit and turn on the waterworks for her benefit.  If she was here to talk to me about our son and what had happened to him, then that was what I was going to do.  She kept pausing at extremely forced moments (it was a little like talking to a human bereavement textbook); I can only assume these were appropriate moments in which we were supposed to use the time to grieve and/or reflect on just how shit our situation was right now.  I told her I had an idea for fundraising as I wanted to help the hospital, her response was “Are you sure you are ready?”  I think it was the moment that my husband (usually the most easy-going man I know) said “Right, are we done here then?” that I knew he was as uncomfortable in her company as I was.  She offered to see us again for a return visit, we politely declined.  I can’t say that the hospital didn’t try to help us, they truly did; she just wasn’t the right person for us on that day and I felt as though she should have been more sensitive to how we were grieving for our son.  Instead she tried to force textbook rules of grieving upon us that had no relevance to how we were feeling on that day.  After all we are all different, and we aren’t textbooks, we are humans; and we are all so different.

It’s always this event that I look back on when people in need of advice ask me questions of what/ how/ when?  As much as I want to help them (believe me, I really, really want to try and help anyone who has lost their child); who am I to know what is going on in that person’s mind, or at what stage they are in their shock and grief?  I have instead begun to offer a new kind of “advice” when those questions are put to me;  instead of saying what to say or do (or perhaps to not say or do); I simply tell them what did work for me. I tell them what helped us in those first weeks and months.  I recall the things people did and said that made me feel human again.  Our friends did so much for us in our hour of need; leaving hampers on our doorstep, collecting money so they could treat us to a night-away, leaving us alone when we needed it, and equally being there when we needed them. It was as much a rollercoaster for them in many ways as it was for us; no one knew what they were doing, it was uncharted territory.  They did it brilliantly though; bloody brilliantly, and I feel very lucky indeed that we have such wonderful friends and family around us.

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The more I reflect on all of this; the more I realise that it absolutely is a privilege to be able to (try and) help others now we are a little further on in our journey (yes still hate that turn of phrase) of life after loss.  If this process of grieving for Teddy has taught me anything, it is that we are all so very different; and that is OK.

Elle x


29 thoughts on “It’s OK To Be Different…

  1. How beautiful a post, but also how sad. I have a friend who is a bereavement midwife and your experience would be as far from how she loves and goes alongside ” her parents” as is humanly possible to be. I too am a midwife, all be it retired , and I am saddened and disappointed in how something almost so raw and natural in being alongside another human being who was in pain, could go so badly wrong. Her mistake if I may be so bold as to offer an opinion was in not taking the time to sit down quietly and wait until you allowed her to enter into the most private moments of your lives, to take her lead from you and just ” be still” On the positive side, the support and love received from your friends was what really mattered, and the support and help you have given many grieving mothers and fathers since is something very special and Teddy is continuing to work his magic in the lives of all who read your blog xxx

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  2. You have 1000% hit the nail on the head! We had to have a termination at 20 weeks back in December, and there are still people now who cant talk to me. I did/do the same as you. I cry when I need too, and talk when I want too, but you are right, life still goes on. It sounds awful, but I kept thinking of the people who are/were in worst situations than me. I hope you don’t mind but I’m going to share this! I have recently done a similar blog post myself.
    I hope you are looking after yourself! You are doing an AMAZING thing by speaking out! I really appreciate your words, they make me feel normal! From one angel mum to another! LOTS OF LOVE! XXXX

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  3. As someone fairly new on their ‘journey after loss’ I often wonder if there is something I can say to people to make them feel less confused about how to interact with us. I’ve been surprised by how many people have just left us alone. I’m assuming that they are giving us space and waiting for us to make the first move, and don’t want to bother us. In some ways this is true. But it’s also a very lonelyplace to be.

    In my situation, I’ve started sending a text before my first meet with people saying…try not to worry about what to say: very little you say will make us feel any worse, We’re happy to talk about our son and what happened, it’s not a banned topic, but also, there’s no pressure to say anything in particular either….I don’t know if sending this helps, I just can’t bear the awkwardness, whether it’s real or in my head, I don’t know.

    Whist I feel like i do need time, i also don’t want to feel like an outcast (although maybe i always will now, being part of this tiny club that no one in their right mind would elect to join) and im not necessarily fully equipped with all my best social skills in order to initiate things or say the right things. Personally I feel a little like a child who needs a little bit of help finding their way, and need everyone to be patient with me but to keep persevering.

    I’d say to anyone wondering what to do, that maybe you could try to keep the chain of communications open, let them know you’re there but not expecting anything and just try not to expect too much back… but not to give up (but would this feel like nagging to others? Quite possibly)

    None of our friends have ever said anything that upset me (now professionals and close family are a different matter, maybe because we assume they should ‘get it’ a little more: rightly or wrongly) But you’re totally right: there cannot be a prescribed reaction because no one is the same and no ones grief is the same.

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  4. Our bereavement midwife was awful too and this sadly sounds so familiar. She hadn’t bothered to read Eleanor’s notes and didn’t know her name or date of birth. It was terrible. I was in shock at the time and couldn’t cry either – I felt like I was on display and she was just ticking boxes. Our friends and family and what got us through. Meals, biscuits, fundraising, company when required, silence when needed and some really thoughtful gifts such as a bracelet with Eleanor’s initials, surrounded by stars which I wear every day. We are very lucky to have such amazing people in our lives. Much love and well done on the recent hamper fundraiser. Xx

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  5. Hi Elle

    I always marvel at how eloquently you describe your experiences of losing Teddy and as you say, everyone deals with their grief in a different way. My son was stillborn at 40 weeks and 6 years along I still struggle to say his name or talk about him. I am very much in awe of you and all the wonderful things that you do to keep Teddy present in your life and honour his memory. Again, each to their own and whatever it takes to get through the dark and not so dark days.
    I’m sorry that your bereavement midwife didn’t help you, I was lucky (?!?) in having a fantastic one who supported me through 4 further pregnancies (resulting in 2 more lovely boys) and I found that having her as an advocate was invaluable.
    In terms of what to say/do, some things have stuck with me: “I know how you feel, when I lost my dog…”, “I had a miscarriage at 8 weeks, it’s hard isn’t it”, “I’m sorry your baby wasn’t to be”. All probably said with the best of intentions but perhaps not particularly well thought out!
    Even people saying that they didn’t know what to say helped me because frankly I didn’t know what to say either, there are no words to describe how you feel when you lose a child and sometimes I’d just say “I know, it’s really s##t and I just don’t understand it”.
    I had friends who messaged me everyday, I had friends who left me in peace, both of those responses worked for me.

    Please keep doing what you’re doing and best of luck for the future xx

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  6. Oh, Elle…please know that your words are a healing balm to so many. Thank you for your transparency and honesty. God is using you in mighty ways to touch people all around the world. I pray that each day brings you more joy and peace than the day before. You are loved…❤️🐝👼🏻

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  7. An articulate and spine tingling account of an incredibly emotional and traumatic experience. Perhaps you have found your own calling here – helping others to deal with this heart breaking experience – sharing and understanding – showing empathy with the devastation but also a route to recovery. Truly inspirational! Xx

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  8. Another beautiful, eloquent, helpful post thank you.

    I also found this article really interesting and valuable. ‘Don’t compare. Ever’ -exactly! https://mobile.nytimes.com/2014/01/21/opinion/brooks-the-art-of-presence.html?referer=

    Another thing I once read which has also stuck with me is this- don’t be afraid that mentioning the name of the person who has died will bring back painful memories. The bereaved are always thinking about that person anyway so you’re not reminding them, but just showing that you remember that person too x

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  9. I’m from the US and didn’t have a bereavement midwife but I did have a midwife who said some extremely unprofessional and hurtful things. I’m shocked that health care providers aren’t better trained on infant loss.

    Liked by 1 person

  10. Filled with rage at your midwife; as a midwife myself, it’s not hard to be respectful and honour the babies and their parents. Grief is so uncomfortable for some isn’t it, they just run in the opposite direction. Not everyone has that choice though. This blog will be very helpful to those wanting to support a friend or loved one, thank you for writing it. X

    Liked by 2 people

    1. Thank you Dawn. It was just the one bad experience. I must stress that the regular midwives who came to visit were brilliant, they let me talk/cry/stay silent when I wanted, and one helped me through my second loss in January this year…..she was utterly brilliant. You all do an amazing job! Big love xx

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  11. A wonderful post Elle, your words are like a personal therapy for me on this sometimes very lonely journey of child loss. Since losing my 4 year old little boy I have had amazing support from my family and friends. What do you say to someone who is completely broken? My experience is you don’t need to say anything, just be there. Not only in the beginning but for the long haul. Oh and definitely don’t ever compare (this was always a shocker!)
    For me, the food parcels, the daily text messages from friends, not asking if I was ok… of course I wasn’t, but telling me they loved us. Taking our 2 older children out for the day to have some fun and give me and my husband some time. Donating in his memory. These kind acts have given me strength in the darkest of times and those friends have kept me going.
    9 months on and some days I feel my heart sing again, your blog and posts give me so much strength and help me reflect on the past whilst feeling more positive about the future.
    Thank you Xx

    Liked by 1 person

    1. That is so very kind of your to say. I cannot tell you how much it warms my heart to read that my words and Teddy’s story are helping others to let the light back in too. I am so sorry to hear about your little boy. Sending all the love to you. xx

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  12. You are brave to have expressed your thoughts into words. It took me nearly fifteen years to do so, myself. I have found it very encouraging just for my own personal strength and durability for this tragic journey I’m forced to take. Bless you! I’m glad you blogged…I’m proud of myself for blogging. #grievingmoms #strangeconnections

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  13. I too am a (retired) midwife/health visitor and am so sorry that you were treated this way by someone who really should have known better.
    Take heart that there are many more people who do care and are not going to hold back to show that they care.
    Stay strong.

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