A few weeks ago I watched a program on Channel 5 about Stillbirth and it has really stuck with me. It is such a sad and emotive topic that it is rarely spoken about on TV so I wanted to watch to see what was said. The thing that stuck with my the most was the stories that were told about how other people had said some insensitive and hurtful things to them along their journies. And this, I am afraid, was all too familiar to me.
Talking to someone in the midst of grief and sadness is difficult and uncomfortable. I have been on both sides of it and it is true. I have struggled with finding the right word to say or the most appropriate phrase etc. I have been that awkward person reaching for the magical thing that is going to help or the thing that will take all the pain away. And I have been the person in despair, in the sadness who is being talked to. Honestly, I didn’t like either situation. Whether or not I seem like it, I feel so awkward and exposed and I am sure that other people in these situations feel the same or similar. But it doesn’t mean that we should shy away from these conversations, if anything it means that we should do them more so that they are less awkward or taboo.
There have been a few times where words have hurt me in my grief. I am sure hurt was not intended but they did. We need to be careful with our words because these things will stick in people’s minds. One of the first things that really stung after Eilys was diagnosed was during a visit from an SMA charity who were suppose to be visiting us to give support. The outreach worker woman first of all didn’t acknowledge Eilys, didn’t really look at her even though she was in the room the whole time. There were various things that pissed me off about that meeting that I won’t go into because I am still so upset by them but one of the them was that she referred to Eilys in the past tense the whole way through and talked about how the charity could help after she died. Maybe I am being overly sensitive but Eilys was in the room the whole time and it hurt that they felt like it was ok to talk over her like she had already died, like her life didn’t matter and like she wasn’t worth knowing. FYI that charity did fuck all during her life and after she died and despite me writing a complaint about the outreach worker they never apologised. Some people are just twats.
Sorry that got a bit sweary but I am still so upset and so angry about it. Maybe I will complain to them again… anyway I have gone slightly off topic…
After Eilys died I messaged everyone that I could think of one by one to let them know. We had so many beautiful messages back, so many lovely things were said but I cannot quote any of them… I can quote the one response that upset me. I know that it wasn’t sent in a horrible way and it wasn’t meant to make me sad but it did. Someone messaged me back and said this “Wow. That seems very sudden. What happened? She seemed so well”. I know that this was probably something that was meant in a nice way but I read it like they were accusing, you know? It stuck with me and is one of those lines that goes around my head at times… crazy or what.
One thing that I have read over and over and over again from other parents of children who have died is that folk say “at least you have [your other child]” or “you can have another one”. I have been lucky that I have had this a lot but I have had it and it really hurts. Yes, we have Dylan but having another child doesn’t mean that I don’t grieve the loss of Eilys just as hard as someone without another child. In a lot of ways I think that having to navigate through the grief with a little chap in tow is a lot harder, we have to put our feelings aside and deal with however he feels. For the most part this is a positive thing because have another focus is helpful. The flipside is that we as parents have to not only handle our daughter dying but we have to watch out son grieve which is incredibly painful. But more than that by saying to someone who has lost a child that they have another one or that they can have another one you aren’t giving them comfort, you are saying that that child is replaceable. I wish I had a good response to these comments but I don’t, a blank expression is generally all I have to offer in return.
Which brings me to a conversation I had a few weeks back with some door-to-door Jehovah’s Witnesses. I am not one of those people who slams the door in the faces of religious people who come to my door (my husband is). I am always polite, sometimes I even have a little back and fourth with them. I find theology really interesting so I usually don’t mind a chat. Saying that sometimes I am not in the mood and I will just say that but I am always polite. So these 2 ladies came to my door. One was digging around in her bag and mumbling something about finding a list and that I had asked her to come round. I was a bit harassed by Evan. I said that I didn’t think that she had the right house. Oh yes, she definitely did have the right house but she just needed this bit of paper in her bag and that she had something for me. Hmm. Odd. I asked where she was from. She said that they were Jehovah’s Witnesses. Now here is where I should have said no thanks but that I hope they have a nice day but no… I said something along the lines of “oh no thank you I have my own beliefs”. This lady quick as a flash came back grumping about how “young people” can’t be bothered with having God in their lives and that with the internet and “instaface and twittergram” (actual quote) made “young people” so lazy. Now, I like being called a young person but I wasn’t in the mood for being called lazy on my own doorstep by 2 uninvited guests. I said that no, I was in fact very interested in different cultures and religions but they weren’t for me and that it wasn’t a lack of knowledge or being bothered it was because my 1 year old daughter had died from a genetic condition and that I couldn’t fathom a God who could do that to an innocent child or who could devastate our family like that. I went to close the door. She held her hand out to stop the door and said “well, you know that God will resurrect her”. Politeness left me and I said “with respect I think that is utter crap and I will be closing my door now”. Before moving her arm she said with a smile “God has a plan for everyone and that was just her plan”. Each to their own and all that but I was/am livid at this. That woman came to MY door uninvited and pushed her beliefs at me despite me telling her that I was not interested and after giving her very valid reasons. And the thing that really boils my piss about it is that she will have gone about her day thinking that she had given me some words of comfort whereas I was left angry, very upset and not really knowing what to do with myself for the rest of the day.
My point in all this is that words are powerful. I try to be gentle with my words now as I know the damage that they can do. I really do love talking about Eilys and I love hearing her name, it really does lift me. If you know someone who is grieving then talk to them, don’t back away from them. If you are worried about how to talk to someone who is grieving let them lead, just listen. Or say to them “I am so sorry I don’t know what to say” because by saying that you are saying something and allowing them to talk. I have banged on about it so much but one of my friends always starts by saying “is today a good day to talk about Eilys?” which I love but do you know what I love even more… all the friends that just do talk about her normally, like we do. Or just say her name. I love that most.
Thanks for reading