After Eilys’ diagnosis and then after she died I was painfully aware that to a lot of people that would become my tagline. “Oh that’s Emma… you know the one who has the terminally ill baby” or “Emma… Emma whose baby died”. I didn’t want that to be the case and I certainly didn’t want that to be how people knew about Eilys as she was so much more than her condition, she doesn’t deserve to be just a sad story and her life will always outweigh her death.
I realised pretty early on that people would be awkward around me. I have been in similar situations before and it is hard to know what to say or how to broach the subject. I have been that awkward person not knowing how to deal with the situation. Plenty of people, especially after Eilys died, just didn’t talk about her or even mention her name. I understand why they did this, I really do, but in completely ignoring her it always makes me feel so much worse. Most days I want to talk about her, I need to talk about her. One my friends nailed it early on by asking “Is today a good day to talk about Eilys?” I loved this. It was a very gentle approach, it gave me the opportunity to say no and they used her name. I always love to hear her name. I would 100% say that this phrase is an excellent one when talking to someone who has recently lost someone close. I know that I might be in the minority in wanting to talk about my grief, the person I lost and all the events around her illness but by not even mentioning that Eilys can feel so isolating. It would make me feel like I couldn’t talk about her if I wanted to which hurt because some days I really needed to or worse it made me feel as if she didn’t matter to them.
I have tried to be as open as I can about how I am feeling and there are key people in my life that I will go to if I need to to get my feelings out. I am also very open on Instagram. I kept sharing moments of Eilys and special memories because it felt like the right thing to do for me. A lot of the time I didn’t share the same things on Facebook as I have a lot of family on there and I didn’t want to upset or hurt any of them, which is ridiculous and I am guilty of treating them exactly how I just said I didn’t want to be treated.
Sometimes it is hard to remember Eilys without coming across as an attention seeker. This is never my intention. When I share a photo or video of her with family or on Social Media it is just because it makes me happy and I want to remember the happy times. I realise that this might put people in a weird position, what do you say? I think with the rise of social media’s popularity has put a lot of people in very tricky situations like this. Grief was often a very private thing and not something that we were actually confronted with. Personally I just like it when people comment in a similar way to if she was still here. I really really hate the “are you ok?” replies or the ones that make me feel as if I am putting on a show of my grief. I know that the folk who make these comments are just trying to be lovely and they are being lovely and caring but it makes me feel uncomfortable about sharing memories. I am sure you are now thinking “flipping heck this woman is a moaner”.
I just really don’t understand why grief should be kept quiet. It is a fact of life. People die. People close to them are sad about it. So why isn’t it talked about more openly? It is kind of ridiculous and unhealthy. I know that a lot of the walking on egg shells is to either protect me, or us or themselves but in not talking about how we feel it makes things a lot worse in the long. Grief is lonely and we all need people in our corner. I need to be able to talk about how I feel or I think I would have gone insanely now.
A lot of the time I am fine to talk about how I am feeling and yes, sometimes I get upset but mostly this takes me by surprise. I don’t have triggers as such. I don’t find other babies difficult to be around. Eilys was totally different to most babies anyway so luckily they don’t remind me so much of her. Sometimes I see a baby that looks like her or I am walking the baby section of a clothes shop and think “I should get that for Eilys” and that makes me sad. I try not to dwell on the things she couldn’t do because she was so lucky in other ways and we were able to fill her life with so many experiences that some children never get to have. Basically I just try not to dwell on things that I can’t change or thoughts that are unhealthy, if I did I would drive myself crazy and ultimately what is the point.
Trying to find out what was “wrong” with Eilys, getting her diagnosed, caring for her and her death has obviously come hand in hand with some adjustment for us as a family and individually. Each step has meant that we have had to readjust our “normal”. This is why I really struggled when people tell me how brave they think we are. None of it felt brave. It was all terrifying and unbearable but it became our normality. I don’t feel like we have been brave at all, we just found ways to cope with the day to day and that’s not brave, that’s just getting out of bed in the morning and getting through the day.
I don’t want to be known as the mother of the beautiful baby who died of a horrible genetic condition, I just want to be known as Dylan and Eilys’ Mummy. And if I am having a shitty day and I am sad and crying in the aisle of Tesco because I’ve spotted a kinder egg or I’m sobbing in Clinton’s cards at the Finding Dory display because Eilys never got to see it, please give me a hug. And if you know someone who has loss someone then allow them to talk about them if they need to, don’t not mention them because you don’t want to remind them of their loss, trust me they are already on their mind.
Thanks for reading