Sharing Eilys

A few weeks ago during my counselling course I had a total shitter of a time due to one member of the group being a little overly critical of me as a person without really trying to get to know me. It threw me into a bit of a tail spin and I found it hard to drag myself out again for a few days. But after a lot of thinking and mithering my friends and family, I dragged myself out of it.

I did think about maybe not going back to my course. I don’t want to surround myself with negative people or situations. Plus something has broken about the group, I didn’t want to share anything with a group where one of the members was so toxic towards me. I am sure that this all sounds very over the top and dramatic but I feel very protective over the memories, especially of Eilys and the last year. I don’t want to taint those memories with negative feelings, I don’t want to share them with people who don’t deserve to hear them. They are precious.

After Eilys was diagnosed and then again after she died I thought a lot about what to share and with whom. It is a difficult thing to navigate. Sometimes when I was out and about at baby groups (I only went twice or so with her after diagnosis) or at soft play I would spot people staring. As she got bigger it became more and more obvious that she wasn’t just a “slow” baby and that something was “wrong” with her. For the most part folk were nice and asked tactful questions and I would try to answer but if someone was just staring I just ignored them, fuck ’em I would think, they are not worthy of your time. After Eilys had her NG tube fitted it was a more “obvious” sign that she wasn’t well and people seemed to ask more questions and mostly, I was fine with that but the staring increased, which I was very much not fine with. I don’t know why some peeps think that gorming or looking sad at someone is a better approach than talking to them! Grrrr.

The second time we went to Center Parcs, about a month after Eilys was diagnosed, we would take her pushchair poolside with us. And every time someone would stop us “Oh I am sorry lovey you can’t bring pushchairs this way… there’s a pushchair park just outside if you could take your pushchair back there, it’ll be perfectly safe…” etc etc. To start with I would ramble on about her condition and how it effected her which would take a few minutes and the lifeguard or cleaner would just kind of stare at me, mortified. By the end of the week I was basically just shouting “She’s disabled” at whoever asked which got the job done a lot quicker and with less agonised looks from staff members. Weirdly, this stung more. I have no idea why but I really didn’t ever seen Eilys as disabled when she clearly was but it didn’t seem to compute in my brain that she as. Very weird.

After Eilys died and the initial filtering through the family and friends with the news happens and we were overwhelmed with messages of love and support there is an awful stage of being bereaved and having to get on with normal life with the risk of running into people who don’t know. There were a few times that I would see people and just not want to deal with questions or conversations so I would run away. Literally sometimes. There were a few times that I was a bit trapped into conversations and the first of these I have to say didn’t go well at all… Me and Dylan decided to get the bus on a Friday afternoon to meet Joe from work and while we were waiting at the bus station someone I knew from Chub Club came over for a chat. I hadn’t seen her in about 9 months so she didn’t even know Eilys was ill. She asked how I was and we made small talk and then she said something about Dylan’s beautiful hair and then did a pretend looking around and said “how is your daughter? She must be getting so big now”…you have to believe me that I really didn’t see it coming, naively, and in my panic I just said “Oh she died”…oops. I don’t even know why I said it like that either. I am never that blunt and oh shit, her face was just pure shock and horror, as you can imagine! I rallied and gave some overly elaborate and garbled explanation but it was truly awful and I felt so bloody guilty about it afterwards.

So from then onwards I made sure I had a few “stock responses” to fall back on. Some days I do just run away from people who I know will ask questions, other days I don’t. It’s not even the telling people that I mind so much. I love talking about Eilys, I love remembering her and I love that she mattered to so many people. It’s the bit of the conversation where she comes up and I know that the next thing that comes out of my mouth is going to really upset the other person and is going to make them feel really awkward. It’s that look on their face when the words hit them. It’s the slight panic in their eyes of “oh shit what do I say now…” It’s the fact that there is no sugar coating the truth. It has got better and it has got easier though.

As time ticks on it has become less about seeing people that I know who are going to ask about Eilys and it becomes more about new people… New hairdressers, new job, new friends, new acquaintances etc. There will come a point where the “do you have any children?” question comes up or now that I am pregnant the “is this your first?” question. And yet again, the fear and dread that the next words that come out of your mouth will make someone feel instantly guilty for asking a question or that look of pity or sometimes tears. I now weigh up in my head how much I need to tell this person, do they need to know everything? Is this the right moment? Etc. Generally I dodge answering truthfully by saying something like “I have a 4 year old called Dylan” or “No this isn’t my first” sometimes this leads to further questions but mostly people are being polite and don’t really want to know everything. I don’t ever say that I never had Eilys and I never will, but some people don’t need to know the details. The last time this happened was at our hypnobirthing class when the instructor asked “how old are you other children?” and as I had already said that this was my 3rd pregnancy I couldn’t back track or run away so I answered truthfully. Then there was “the look” and “the pity nodding” and then the silence of them not knowing what to say to me next. Honestly, it is the worst!


Last week, during counselling the session was called “About me” and we were each invited to bring in 2 things that meant something to us and that we were willing to talk about. Initially this freaked me out, it was such an open task. There was no guidance. I really hate things like this. It is not only something that is meant to expose you but you could get the tone so wrong! Panic. And this was before that horrible week. I did a lot of soul searching. A couple of weeks ago I decided that I would just take 2 stupid things, 2 things that didn’t mean anything to me. Why should I share anything meaningful with this person? She didn’t deserve it. But up to that week, I was enjoying the course and I was opening up more and more so on the flipside, why should I not share? Why should I let one person affect me like that?!

Last weeks session was amazing. 7 of us talk through our items in turn and the stories were truly inspiring, some were funny and upbeat and others were poignant and very sad. I felt like as a group we got closer as we share personal experiences and personal items from our lives. It was lovely to be a part of it. I took my turn and in the end I decided to share. And share I did. I took along some freshly baked salted caramel brownies and talked about how baking is my happy place. I explained that I enjoyed being creative in the kitchen and baking was the way that I relax.I talked about how it reminds me of my Gran who passed away a few weeks ago as she use to let me experiment in her kitchen. I talked about how before Dylan was born I filled the freezer with cupcake batter ready to bake for guests who inevitably were going to visit. And then I came to my second item, the memory quilt I am making using Eilys’ old clothes. I talk about Eilys and how when she died I want to do something positive and how I didn’t want to have a shrine to her or to keep a load of stuff just because it was hers. So instead I started to make a memory quilt of her clothes so that it was something I could use and it would keep me busy. I talked about Eilys and her being ill. And it felt ok. It was sort of freeing and the group were really lovely in response. They listened and looked interested and made some lovely comments. I am so glad that I shared.

And what about the person who was mean to me? Well, I kept a bit of an eye on her (creepy, aren’t I?) and throughout all the amazing stories and openness of the evening she looked utterly bored. She even yawned a few times. I realise that she might have been tired or whatever but she just looked like we were all wasting her time or like she was above us all. To be honest, it really pissed me off. Then to top it all off during the break I was talking to another lady in the group and the meanie piped up, rudely, and said “so what was wrong with your daughter that made her die” which I can honestly say is the bluntest way I have ever been asked about Eilys’ condition. I answered with my stock response about SMA Type 1. “Never heard of it” she exclaimed, as if I had just made it up. I carried on talking to the person I had been talking to and then she interrupted again “will this baby have the same thing then seeing as it is genetic?” and again, stock response of no, and a little explanation of the tests etc. And that seem to shut her up a bit, well she didn’t ask anything else. The person I was talking to looked quite taken aback but didn’t say anything. During the rest of the session, like the first half of the session, the meanie didn’t offer to talk about her items, she didn’t offer any comments on anyone else’s items and just looked bored.

I am so glad that I decided to continue with my course and I am really glad that I shared with the group and I have learnt a very valuable lesson that sometimes people are dicks just because they are dicks.I am really sorry that this person feels the need to be awful to other people but I realise that it is her problem and not mine really.

And in regards to sharing memories and stories of my beautiful girl, I will keep being selective in what I share and with who. Eilys is too precious to share with people who won’t appreciate who she was or how special her story is.

Thanks for reading


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